tag:blogger.com,1999:blog-49513428686313326452024-02-22T01:28:54.558-08:00Hope OvertureInane ramblings about life as I know it.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-4951342868631332645.post-82126016761842336992012-01-17T18:26:00.000-08:002012-01-17T18:26:06.749-08:00Something to think about.Hi everyone!<br />
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So I'm just writing this in response to the uproar about the DLA reforms.<br />
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Just for the record I think it's horrendous and I'm not saying that the anger people feel about it is unjustified in the slightest... I think the decision taken is disgusting and it's going to affect a lot of people's lives so badly. <br />
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But back when I was doing research for my dissertation (suicide reports from the Victorian period), I ended up learning a lot about people's daily lives and how people survived. I was reminded this evening (well, this morning since it's 2.30am :P) of a case I looked at about a man who I think had autism. However, since medicine had not progressed enough to even remotely understand problems such as autism, he was just treated as an imbecile.<br />
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I'm going to paste the article here so you can have a read... I think it shows quite a few things:<br />
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1) How badly newspaper articles were written in 1850! <br />
2) The kind of awful vocabulary used to describe those who were mentally retarded (I use that term in its appropriate context, not in a derogatory way!) <br />
3) The complete lack of understanding and mistreatment of those people<br />
4) That learning disabilities were often confused with madness and general insanity<br />
5) Most importantly, it also shows just how lucky we are to have the NHS and welfare state. I know they're inefficient and I know they need some serious work, but we are so lucky to have them even at the level they're currently at, because people like John, the guy in this article, were not lucky enough to have any sort of support or understanding.<br />
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So, here it is:<br />
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<i>John Cox, a young man of idiotic appearance, was charged with attempting to commit suicide, under the following circumstances:- James Factors deposed that he had known the prisoner for the last twenty years, and that he had always believed him to be of unsound mind, his actions at intervals being altogether those of a madman. About three o'clock on Sunday afternoon, he was at dinner with his wife, in the lower part of the house in which the prisoner, with his aged mother, resides, 3 Woburn-mews, Woburn-place, Russell square, when Mrs. Cox ran down to him, and told him that her son had been attempting his life. He rushed up stairs, and found that the prisoner had attempted to hang himself by a rope, which he had passed through a hook in the ceiling, and then formed into a loop. The loop giving way had, however, thwarted his design, and he was lying on the floor, fully believing that he had succeeded in committing suicide. The prisoner had never done anything regularly for a livelihood, as he was so exceedingly stupid. All he lived on was a few pence he got from the ostlers in the mews for running errands on their account. The reason for his attempting to destroy himself was ascribed to the following conduct of some persons whom he was in the habit of meeting in a taproom in the mews. For some time past they had told him that he never washed himself, and they persisting last Saturday that his skin was very black, he was foolish enough to undress in the taproom, to show that their allegation was quite unfounded. He then became very morose, refusing to partake of anything up to the time of his attempted suicide. Mr Hall remarked that it was a very distressing case, and that the parochial authorities ought to look after him, as he was unable to support himself, and his aged mother could do nothing for him. He then ordered the police-constable to take him to the St. Giles's workhouse.</i><br />
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I'm not saying that we all have it easy. A lot of people still lead horrifically difficult lives and are not supported by the state anywhere near as much as they should be. But equally, at least most don't have it this bad, and aren't sent to a workhouse if they are suffering from learning disabilities.<br />
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Would be interested to hear people's thoughts on this article as I found it fascinating to read and think it really shows how much society has progressed in a positive way since then.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-37482864272842921472011-12-28T15:45:00.000-08:002011-12-28T15:59:40.189-08:00New YearGah, ages has gone by without a blog post again! I always want to update but never get around to it unless I have a pent-up rant that needs to be expressed, and it is that time again ;-)<br />
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Today's rant is about the new year period. I'm not having a go at anyone, it's just my opinion on the weakness of human nature that I will be talking about (including my own. I am not immune to the character flaws to which I am referring!).<br />
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So, basically, my opinion on the new year and general hype which surrounds it is this:<br />
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If you have something to change and it's worth doing you will change it now and not wait for a convenient set of numbers to give you the incentive to do it, because what reason is that? Also, I've never really seen the point of celebrating new year as it's just a number change, it's not automatically going to magically change your life and I just kind of get frustrated at the same naivety every year of celebrating a new year and a "new you" and setting new years resolutions... I bet you had new years resolutions last year and didn't stick to them and now you're going to do the same again where you promise to become a better person, yet slip back into the same old habits because really, your attitude hasn't changed, just the bloody calendar.<br />
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Like if you want to learn new things and have general aims for the year ahead then that's fine and wonderful. I just get sick of people making resolutions they never stick to and doing the same thing every single year. It's just so pointless and futile. I do understand that the new numbers/ dawn of a new year can make it easier to feel like you're starting something and organise yourself, I do get that. It's just the whole thing of waiting for something to change by itself without actually being assertive and acting on it, and acting on it for the right reasons! It's when people assume they should have a resolution for the sake of it as well, grrrr! I always have things I want to improve about myself and I might find it easier to imagine a start date for it to give myself perspective but it's not like as soon as the 1st of January comes I'm going to make a concerted effort to do something new or "stick to something".<br />
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I think change motivated by the realisation of the need to change is always more powerful, effective and long-lasting than changes applied at a new year for the sake of it.<br />
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I think self-awareness, development, having goals, aspirations and motivations are essential in life and I completely advocate having them; but I think the point is that these things should be constant - we should always be aiming to learn, discover, grow and evolve. It shouldn't a process that just starts because it's a new year. <br />
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It just seems to follow the same pattern every year with a lot of people - new year, diet, an aim for life to be organised and better... and yet they gradually fail at every single one of the points they had aimed for, then adopt an attitude of "fuck it, I've ruined my resolutions now, no point even trying any more", fall into the same habits that they had resolved to change at the start of the year, and live in the same way as before and wait til the year changes again to bother to try and re-implement the change.<br />
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I am always thinking of things I want to try and do or change about myself, but I see it as a constant process - we are always changing and growing by our nature and I think that is the most healthy way to be. I'm not saying my life is lived in an ideal way, far from it - but I do think that more people should try and continually renew and refresh their goals for themselves rather than wait for a new year or new set of numbers and for that to be the only real catalyst for change.<br />
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If change is worth it then it's worth it straight away, or as soon as is feasibly possible.<br />
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As an example of an "as soon as is feasibly possible" situation, I need to lose weight. I had some medication changed about 6 or 7 months ago and it caused me to pile on about a stone of wobble and podge. I feel disgusting and my clothes don't fit me comfortably any more. I want to get back down to the weight I was before I had my medication changed. However, since that original medication change I've had *another* one and one of the effects of the new stuff is increased appetite and I'm CONSTANTLY hungry. I've also had a hormone injection which probably adds to the hungry-all-the-time thing, and that doesn't wear off 'til March. Part of me thinks "well, what's the point in doing anything before then?" - but equally I HATE waiting for things to change by themselves - if you want something (within reason!) then I think it's important to be pro-active. And that's what I intend to do. I'm having to wait to be able to implement my new eating plan - this is because I'm currently staying with my parents for the Christmas holidays and I'm not really in control of what food is in the house or what I eat. It's also just been Christmas, and the house is full of food which is hard to resist when you're constantly starving! So I'm having to wait 'til I get back to my own home in Bristol to start eating the way I want to to lose weight. I'm not waiting just for a new year and new set of numbers because honestly what is the point? I should also point out I'm not resigning myself to my fate as a lard-ass until I get back to my own flat. I am still trying to make immediate changes to my diet within the limits of what is possible when living with my parents, I'm not just stuffing my face with the excuse that I can't start my diet properly until I get back home. So my point here being, although I can't make the changes I want to make comprehensively just yet, I am trying to do everything I can (relative to the situation I'm in) to change NOW as opposed to just putting it off. <br />
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Anyway, just wanted to clear that up in case there was the possibility of that being misconstrued as hypocrisy regarding waiting to change something!<br />
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But yes, to summarise my general point - if something is worth changing, do it now. I've never seen the point in new year's resolutions. They're futile and empty and often token-gestures. I hate the adverts that come on around new year talking about a "new you" and all the rest of it. The same adverts with the same sentiments come out every year - why? Because it's the same people stuck in the cycle of setting resolutions, failing at them, falling back into their own habits and then waiting for the next new year to set resolutions again, and so the cycle continues.<br />
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Maybe I'm just cynical and it's part of my grumpy-old-woman syndrome. But this whole new year bullshit really gets to me year after year! <br />
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I'm interested in other people's opinions on this actually (as I am with everything) so if you feel the same or different or whatever, do feel free to comment! :)<br />
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OH OH I should also point out, in a general update sense, I GOT A KINDLE with my Christmas money and I'm in love with it! I got it mainly for the convenience of being able to store loads of books all in one place, because I have a tiny flat and no space for lots of real books so this is the perfect solution. I bought the complete works of Charles Dickens yesterday and have read 11 chapters of David Copperfield so far which is record speed-reading for me! I find the Kindle so much easier to read from than actual books. That said, I will always love *actual* books for the physicality, the smell, the feel, the sense of turning pages... but yes, for now, my Kindle is the ultimate convnience and is more M.E.-friendly than actual books.<br />
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Just as another quick note, I'm well aware this post is written in Yoda speak. For some reason I can't express myself in a straight-forward way at the moment, I seem to be going the long way round to make my points :P I think it's just the regular thing of my brain not working properly; perhaps also due to my reading Charles Dickens and adopting the way he writes; and also I think the Mirtazapine (which I started about a month ago - ish) has changed the way I express myself a little bit too. I hate having concepts in my head and not being able to express them in the right way and not being able to do them justice.<br />
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Anyway, I really am finished now ;) hope everyone is well. xchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com1tag:blogger.com,1999:blog-4951342868631332645.post-11677592413653414522011-12-17T16:03:00.000-08:002011-12-17T16:10:57.088-08:00Personal ResponsibilityHi guys :)<br />
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So I've been meaning to write about a lot of things since my last post but they can wait for now. I'm motivated to write about one thing in particular at the moment and that is the concept of personal responsibility. Sounds patronising I know, but some people are so ignorant I think they need patronising.<br />
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I've just read the following article:<br />
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http://www.bbc.co.uk/news/uk-england-south-yorkshire-16225748<br />
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To summarise: a student was hit by a bus after a night out at a bar at Sheffield Uni. The bar in question had a drinks promotion on that night. The uni have now cancelled all drinks promotions at bars across the campus to investigate.<br />
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FOR GOODNESS' SAKE.<br />
<br />
Cancelling drinks promotions across one university because one person was stupid enough to get wasted and then hit by a bus is NOT GOING TO MAKE ANY DIFFERENCE.<br />
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Firstly, I'm sorry to sound controversial and blunt - it is a tragedy and the person in question has suffered serious injuries. I feel very sorry for her, her family and anyone else affected. <br />
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BUT...<br />
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There are a few issues here that I'd like to address that are nationwide problems.<br />
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Firstly, the reliance on binge-drinking as an integral part of our culture and the assumption that that is the only way to have a good time. I personally find it pathetic that we have to rely on poisoning our bodies and chemically altering our brains to be able to enjoy ourselves. <br />
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Secondly, the absence of personal responsibility. If anything happens to us we are always looking for someone else to blame. In this case, it's the bar - oh, how dare they have a drinks promotion - that was inevitably going to get someone hit by a bus! NO. It's YOUR CHOICE to abuse a drinks promotion and drink so much that you are wasted enough to not be able to control yourself and you get hurt. <br />
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We need to exercise some self-control for a change, and take personal responsibility for our actions/ choices.<br />
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This girl apparently has serious head injuries and a punctured lung - and I'm afraid she has no one to blame but herself. Okay, so I don't know all the facts - if her drink was spiked or something then I might change my mind but assuming she just had too much to drink, then I'm sorry but it's her own fault she got in the situation she did.<br />
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People are generally just happy to be ignorant about everything.<br />
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For example, our attitude towards money in this country is disgraceful. We never save any of what we earn, myself included. We treat it all as disposable and spend it without thinking twice. We go into our overdrafts without really thinking about it, and the general attitude is "oh well, worry about it later".<br />
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It's exactly the same kind of attitude that we show when it comes to drinking. People don't worry about the state they could get themselves into, it's "oh I'll just have another one, it's all a bit of banter". <i>Not so much when you get hit by a bus.</i> <br />
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I get so sick of the tendency of people in this country to blame other people for their problems and to just run away from or ignore everything. We spend recklessly, with the attitude "oh someone else will bail me out", "my overdraft will save me", "I'll pay it back at some point", "I want this item and I don't care if I can't afford it, I want it therefore I'm having it, I'll worry about the money later". We drink recklessly, with the attitude "oh someone else will make sure I'm okay and get home safely", "I won't worry about it, I'll just have another drink".<br />
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The case with this girl getting hit by a bus, and the subsequent reaction of the uni to shut down all drinks promotions knowing that they'll get the blame, is just another casualty of our society's bad attitudes.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-48018825827129089002011-12-12T17:33:00.000-08:002011-12-13T10:13:21.924-08:00OH HEY GUYZZZZHey sweetpeas!<br />
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So I clearly still haven't mastered the art of regular blogging. I can't believe my last post was like 8 MONTHS ago! Ridiculous! <br />
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Basically, Uni work got crazily intense and the long-term pressure made me even more ill physically. I was just exhausted, and was stuck in bed most of the time. I used up every energy reserve I had (and every energy reserve I didn't have). I accumulated a lot of spoon-debt (apologies if you don't know what that means!). I then also had the stress of having to apply for benefits - DLA and ESA (the latter because I didn't - and still don't - feel able to work). I was also trying to find housing by myself, because I didn't feel comfortable with the idea of living with my parents when I'd finished uni. We just rub each other up the wrong way and they are also pretty rubbish at dealing with my health issues - they just don't get it. In fact it's not even passive misunderstanding on their part, they actually seem to have always been in denial and actively resented me for being ill or "faking" it as they probably thought I was doing. There were a lot of issues in actually finding somewhere to live as a single disabled person, and I will probably write a blog post about that specifically at some point as I feel it's an important issue.<br />
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Then eventually I found somewhere to live in Bristol in August, and I moved in at the end of the month. The last few months have been pretty tough, particularly settling in to living on my own (not just independently of my parents but also without housemates which I had all through uni, so it's been very odd being alone). I think, also, the accumulation of physical and mental "debt" I built up whilst trying to scrape through the last months of uni needed to "work its way out" as it were, and I've had to just try and be as gentle as possible with myself. That said, about a month ago I had an all-out emotional breakdown so maybe I haven't been as gentle as I should have been. I'm still kind of coming out of the end of that period and trying to recover emotionally.<br />
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As I predicted, the loss of the purpose that uni gave me really hit me hard. I had nothing to wake up for and that was soul-destroying. It IS soul destroying, but I'm feeling better about it than I was. Honestly I could hardly get out of bed not because of the M.E. for a change but because I felt so miserable. I was crying all the time, constantly uncontrollably angry and bitter at what life had thrown at me and... well, other symptoms of mental breakdown. Always fun. My GP decided to change the anti-depressants I was on and withdrawal from the old stuff was HELL. It also brought back M.E. pain I never even knew existed - I've been on anti-depressants since the age of 16 and my M.E. developed at 17, so I'd never been off SSRIs the whole time I'd been ill until this medication got changed. It felt like every inch of my body was bruised and it hurt to even get changed or shower. Luckily though, the new medication I was prescribed (Mirtazapine) is able to be taken with the old stuff (Duloxetine) so I re-started the Duloxetine which got rid of the M.E. pain which had developed while I was off it, and put a stop to the horrible withdrawal too. Mirtazapine is a sedative and has been a god-send for my insomnia. I'm only on 15mg at the moment but I take it at night and I'm knocked out within half an hour and have a pretty much perfect night's sleep. I do experience a bit of a hangover effect in the morning but it's not as bad as some sleeping pills I've tried. And since I've been on the Mirtazapine I've got a lot better mentally - the issues are still there (not doing anything with my life, not having any reason to wake up in the morning, not having any self-confidence etc) but I feel much more functional and content enough to find things to occupy myself with. That in turn helps the original problems (since I can now find things to do with myself) and again makes me feel better, so the cycle is improving :)<br />
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I've also felt a lot better physically in the last month. I seem to be more mobile, I can stand up for longer, I feel less groggy and foggy and all the rest of it. Actually, the improvement has coincided with a bout of acute bronchitis. How strange is that? The bronchitis didn't seem to add to my symptoms/ be just another thing on top of everything else, which is what I thought it would do, but I functioned perfectly fine throughout it and it didn't seem to make my M.E. any worse. Still can't believe it really.<br />
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Anyway, yes, so I wanted to update you all! :D not that there are many people to update because I don't have many followers and my blog is utterly boring and never-bloody-updated! But I'm actually reading the book Blogging for Dummies so hopefully that will inspire me to stick with it this time ;)<br />
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I don't want to speak too soon and make too much out of the last month or so being good, but I feel as though I might be able to say that I'm starting to recover from the M.E. I pray that saying that doesn't jinx the progress I've been making! I always thought that living alone and just being commitment-free and as stress-free as possible was the best idea after uni to give myself a chance of recovery and it seems to be working thus far, as hard as it has been at times. <br />
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Oh, also, I've had a MAJOR development/ step forward with one symptom! I used to despise food - the thought, smell, sight of it would make me feel physically sick. I didn't eat properly at all, never had the energy to prepare food for myself (I still don't always, but more on that in a minute), and just had no motivation to really eat because I didn't enjoy the taste of food or the process of eating. Then one day it just seemed to change! It's really, really odd. I just started wanting to eat everything that was in front of me and I started to love the taste of things. The sight and smell of food is now (mostly!) a pleasurable experience for me as opposed to before when it would make my stomach churn. I do still get bouts of nausea but they are much improved. I've started cooking and baking and I enjoy it - mainly baking because it's always making extra tasty stuff, heh. But yes, I love it! I mean this evening I made a carrot and coriander soup from scratch and it was the best I've ever tasted. This is coming from someone who, as a year 9 student, told her cookery teacher to "go fuck yourself" because I panicked and got frustrated when I didn't know what to do with a pan of boiling pasta :D also in my repertoire are flapjacks, lebkuchen, roasted red pepper tarts and oatbran muffins. Nom nom nom.<br />
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AND, not only that, but I've started eating new foods that I used to HATE! I used to honestly regard fish as my biggest enemy. Everything about it was foul in my mind. My mum used to make fish pie at home for her lunch and the smell of it... *gag* I used to have to shut myself in my room because I couldn't bear it, it'd make me retch. Then, coinciding with my weird U-turn with food, I really fancied fish pie one day. So I went and bought one, and demolished the entire bloody thing. I loved it. How random is that? I honestly can't work out why it's happened, I haven't done anything special over the last few months apart from removed myself from society slightly. (Probably too much actually as I definitely don't get anywhere near enough social interaction, and don't have any friends or anyone I see in Bristol, but I'll probably do a new post on that at some point.) Oh oh oh and the other week, in a cafe, I had granola and soy milk and it happened to come with chopped up banana. And anyone who knows me will know that I have hated banana SINCE BIRTH. Honestly when my mum tried to feed it to me as a baby I'd spit it out, which she found hilarious as she also hates bananas and we think it's a weird genetic thing we share ;) but anyway, I actually was able to eat some banana (granted, teeny tiny bits along with a mouthful of granola and milk but still!) - before I would retch and start panicking if anyone put anything banana-related near me. So to actually be able to eat tiny bits was a really massive thing for me!<br />
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Anyway, this has been a much longer post than intended :P I'll stop rambling now.<br />
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I hope everyone is well and happy; please comment/ chat to me, I ronery and onry have internet fwends. <br />
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xxxxchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com1Bristol, UK51.4483201 -2.585708100000033551.447718099999996 -2.5864996000000335 51.4489221 -2.5849166000000334tag:blogger.com,1999:blog-4951342868631332645.post-90191157106361855452011-04-21T19:05:00.000-07:002011-04-21T19:05:31.107-07:00A bit of everythingWow, I really haven't mastered the art of regular blogging have I!?<br />
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I will once my degree's over though. I can't actually WAIT - under 2 months to go! In that time I have to hand in a 10,000 word dissertation which I've hardly started, a 3000 word essay to which the same applies and I have to revise for and sit three exams. In short, fuck. But anyway. <br />
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It's boiling here (at least in the South of England)... am too awake and hot to sleep at the moment. Is it hot in the rest of the country? I wouldn't know :P I haven't even left my house in a week because I've been inputting data into excel for my dissertation, day after day after day. I have to look through 900 newspaper reports on suicide and collate information on 1) the newspaper issue number 2) the person's name 3) whether they attempted suicide or actually "succeeded" (for want of a better word) 4) how they did it 5) their age if known 6) their occupation if known 7) their sex 8) the reason the article specifies for the suicide/ attempt 9) the headline of the article, if any 10) the number of lines of the article 11) The language - anything that stands out. I don't even know what I'm trying to get from that information or how I'm going to use it. I haven't even finalised the question, eeeek!<br />
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But anyway, that's enough of that! Since I've been on the Easter break I've felt the need to look after myself a bit better beauty-wise. I never normally do my nails, never bother putting any kind of products on my face, etc. But for some reason I wanted to start trying. So, here are a couple of things I've found that I've found really useful:<br />
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1) Nails:<br />
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a) Sally Hansen Maximum Growth Cuticle and Nail Treatment Pen: <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.lifeandlooks.com/Images/Models/Full/13923.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="250" width="155" src="http://www.lifeandlooks.com/Images/Models/Full/13923.jpg" /></a></div><br />
b) Sally Hansen Maximum Growth Daily Nail Treatment:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://images.starfishgalaxy.multiply.com/image/1/photos/upload/300x300/SH1w2QoKCtUAAFfQRgA1/2115-1.jpg?et=JqxbFdXhdYt%2BWePxR%2BajBA&nmid=0" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="237" width="271" src="http://images.starfishgalaxy.multiply.com/image/1/photos/upload/300x300/SH1w2QoKCtUAAFfQRgA1/2115-1.jpg?et=JqxbFdXhdYt%2BWePxR%2BajBA&nmid=0" /></a></div><br />
My nails are naturally very flaky and weak. They bend and snap and chip and eurgh. But this stuff has really made a difference :) I don't have pictures yet but I may post some in a while!<br />
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2) Skin:<br />
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I can't afford to go all out on skin stuff at the moment/ get a full set of anything, but I thought I'd start with moisturiser because I do get dry skin on my face a fair amount. I'd read a lot of good things about Simple, so I got this:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://ecx.images-amazon.com/images/I/41K8BtOrZDL._SL500_AA300_.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="300" src="http://ecx.images-amazon.com/images/I/41K8BtOrZDL._SL500_AA300_.jpg" /></a></div><br />
I love it, it's the perfect consistency and most importantly NOT GREASY! Hooray!<br />
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I also got this for the day because it has SPF in it (I don't think they've updated the site or the picture to the one that has SPF yet):<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://www.purenature24.co.uk/pictures/big/13.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="450" width="450" src="http://www.purenature24.co.uk/pictures/big/13.jpg" /></a></div><br />
It's a bit heavier but the SPF is a massive bonus and it smells incredible!<br />
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I would love to get all my facial stuff from Simple, I just have to be able to afford to get the rest of it! It's not expensive, I just can't afford anything at the moment haha.<br />
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3) Lips:<br />
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I'm sure Simple's lip moisturiser would probably be brilliant (can you tell I'm a convert!?) but I thought I'd give Carmex a go because it was £2 and it said it was cherry scented which is all I needed to be persuaded really :P <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://ecx.images-amazon.com/images/I/616HxcrWkCL._SL500_AA300_.jpg " imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="300" src="http://ecx.images-amazon.com/images/I/616HxcrWkCL._SL500_AA300_.jpg " /></a></div><br />
Honestly, I've used Vaseline and various other lip balms/ moisturisers and this is by *far* the best. My lips are so smooth! Worryingly my mum commented on how kissable they look o_O let's just not talk about that.<br />
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Ohh, and, I heard Katy Perry's ET today... :) it's so good. Not Kanye West's version, urgh. ¬_¬ but the original, and some of the remixes are immense! <br />
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Especially:<br />
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http://youtu.be/xViGGXz8Gio<br />
http://youtu.be/mnt1fy78cDs - lovelovelove in particular!<br />
http://youtu.be/R0rEuLdwQNw<br />
http://youtu.be/9QHwDV-GfqQ<br />
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I've not really heard any "dubstep" I like until Noisia... seriously wow, they are slightly addictive!<br />
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e.g. I discovered this when browsing youtube:<br />
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http://youtu.be/BCQZW_iFUp4<br />
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*dance* <br />
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I like discovering new music!<br />
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And don't get me started on my girl crush on Katy Perry.<br />
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Excuse me while I wipe up my drool.<br />
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Oh, last thing - recently when I was in Starbucks I slammed my finger in a door. Facepalm I know. Turns out I managed to fracture my finger tip. Who even does that!? What a tool. And this was it a couple of days ago (excuse the nails, pre-Sally!):<br />
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The black bits under my nail = coagulated blood. Attractive.<br />
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And yes thanks, someone has already pointed out if you turn your head it looks a bit like a penis.<br />
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Only I could manage to get injuries like that.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-38609323010804235352011-02-26T21:41:00.000-08:002011-02-26T21:41:50.003-08:00POTS ahoy!So, to follow up from my last post (gah, it was so long ago!), in my cardiology referral I didn't have a tilt test. Instead, I had a chest xray, an ECG and a heart monitor given to me for 48 hours to record my heart's behaviour over that period. Then it was the Christmas break, and when I got back to Bristol I had a referral letter to see a POTS specialist. That made me presume they had noticed POTS-type-behaviour on the 48 hour ECG (which they did). <br />
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The referral was for the 24th Feb (this Thursday just gone) and it could well be a day that changes my life. I saw a lovely guy - not the guy I was meant to see, I was meant to see the doctor my friend calls "Dr Genius" because he's so amazing, but I saw his senior registrar instead who was equally lovely. Honestly, he was so friendly and made me feel so so "listened to". As soon as I sat down he said "we're very interested in you" and smiled, asking what I think I have wrong with me. I replied "erm... POTS?" and he was like "I think so!" so... voila! I gave him a written list of my symptoms just to sort of clarify what it is that I suffer from, and he went down the list saying "yes" to every single point. I haven't even had a tilt test yet (he's scheduled one for next week, along with an echo) but he's so convinced that I have POTS that regardless of whether my tilt test is relatively normal or not, he's starting me on treatment. The treatment consists of an injection called Octreotide, and I was really surprised that he was so keen to jump in to giving me that because it's very very expensive, and I thought you had to try all sorts of other medication before you'd be put on Octreotide - I know that's the case with the friend I have who has POTS too. But I'm not complaining, I'm touched and seriously pleased that he wants to put me on it, especially as it seems to have made a huge difference to a lot of POTS sufferers. Anyway, so yes, he was absolutely lovely and was confirming the fact that the POTS diagnosis is unsurprising because of my hypermobility (a lot of people with hypermobility or EDS have POTS, or go on to develop it) and my CFS/ ME type symptoms. I don't know if this means I "don't" have ME - but the way I see it, I have ME, which is possibly partly caused by POTS. Does that make sense? I see the POTS as a cause and the ME as a consequence. The symptoms are so similar they might as well be interchangeable, at least for me. Obviously it won't apply to people who don't have tachycardia and the physical phenomenons you find in POTS, but for me it works to use the two together. <br />
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Generally I'm so glad I've been diagnosed. There are mixed feelings of course - it's confirmation that something's not right with my heart and who knows if I'll ever get better. But at least there are treatments (albeit not cures) to make POTS a bit more manageable, unlike ME at the moment. So it'll be nice to try some medication and see what happens. I'm also privileged to automatically be part of a POTS research group as a result of my diagnosis, so hopefully that means I'll be kept up to date with new leads in the field, and also I'm hoping it means I get to meet fellow sufferers which would be lovely. Speaking of which, my best friend recently said that she can't comprehend how I feel and what I go through physically and that I must have some sort of special bond with other people who have the same thing. In a way she's right, only fellow sufferers can understand how you're feeling, and it is nice to be around people who you don't have to 'try' with; if you feel ill you don't have to hide it to the same extent you do with healthy friends. But equally, she's my best friend and that means she understands me more than she could possibly imagine. And it's not the knowing how I feel which I need, it's the compassion, love and friendship that she gives me regardless of whether she knows how I feel or not. Just a random aside there :)<br />
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I don't really know what else to say - it's 05.30am and I can't sleep which is why I'm writing this post. I don't even think anyone is going to read it so it feels a little bit pointless but never mind... what else is there to do at this time in the morning when you don't know anyone else who's up?! <br />
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I might have to write another post soon on my life as I envisage it after uni - i.e. utterly bollocks :P all I can see for my future at the moment is ESA (Employment Support Allowance), DLA (Disability Living Allowance), a scabby flat which I live in alone, and my days completely void of purpose. I'm terrified. But I will elaborate on that, as I said, in a new post. I don't have the energy to continue this one/ start a new one, so for now I'll try and go back to bed.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com4tag:blogger.com,1999:blog-4951342868631332645.post-6259171182675265362011-01-29T16:58:00.000-08:002011-01-29T16:58:26.572-08:00Pain of Salvation - Road SaltThis is one of my favourite songs in the world and it really does epitomise how I feel at the moment. Makes me cry every time I hear it.<br />
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<iframe title="YouTube video player" class="youtube-player" type="text/html" width="480" height="390" src="http://www.youtube.com/embed/EA_hVCqjhPo" frameborder="0" allowFullScreen></iframe><br />
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This time I've tried not to get hurt<br />
This time I'll stay untouched by pain and dirt<br />
This time I'll stick to what I've learned<br />
This time I'll fly so low I won't get burned<br />
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Maybe it's not enough<br />
Maybe this time it's just too much<br />
Maybe I'm not that tough<br />
Maybe this time the road is just too rough<br />
To walk down<br />
So I sit down<br />
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I've walked this road so many years<br />
I've worn out all my boots<br />
I've cried all tears<br />
So many cross roads left behind<br />
So many choices burned in to my mind<br />
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Maybe it's not enough<br />
Maybe this time it's just too much<br />
Maybe I'm not that tough<br />
Maybe this time the road is just too rough<br />
To take me home<br />
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But I walk onchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-5483845592058990942010-11-23T08:52:00.000-08:002010-11-23T09:44:27.155-08:00Heart, coffee, bad shopping spree.So I haven't posted anything interesting for a while. This post isn't going to change anything unfortunately... my life is unworthy of an interesting blog post, ever. I never do anything worth writing down!<br /><br />So no news really, the only thing is that I've got a cardiology appointment on 16th December. Some of the symptoms I've put down to M.E. for a long time may actually be down to having a spacky heart; my friend has POTS (Postural Orthostatic Tachycardia Syndrome) and it's possible I do too, since we have identical symptoms. As I've said before though, when you have something as all-encompassing as M.E. it could just be that. But I'm glad that I've been referred to cardiology because I've been having heart palpitations as well, which are becoming annoying now. So if anything can be done about those I will be rather happy :) also, some of my other 'symptoms' that may be due to POTS is feeling really light-headed when I stand up - but not like just a simple headrush; my vision goes for about 10 seconds, I lose all coordination, I'm very weak and feel like I'm about to faint, I have to lean on a wall so I don't fall over, and often I get a feeling of heat creeping over me and/ or shivering. I'm always always shaky, I get a lot of intense headaches, my circulation is awful (I also have Raynaud's), and walking generally is a struggle for me because I find it so hard to breathe and stay standing up and moving when I feel like collapsing from weakness, and it feels like my lungs aren't big enough to take in all the oxygen I seem to need. I also sweat profusely (lovely eh? :P) and have to guzzle water manically to the point where you'd think I must have just done a marathon. So in other words I can't stand up or walk very easily. Exercise is something I've come to miss desperately over the last few years (never thought I'd hear myself say that!) which I've not been able to do because of the above symptoms.<br /><br />When I went to the doctor's recently with heart palpitations and mentioned (for the millionth time) my symptoms of low blood pressure etc on standing, she took my blood pressure when I was sitting down, then asked me to stand up, and after about a minute or so she took my blood pressure again. Even after a minute of being stood up, my blood pressure had dropped by 20. I'm so glad it was finally as badly behaved as usual in front of a doctor! The other two times I've had that test done, my blood pressure has gone up (which is what it's supposed to do) and I haven't had the usual symptoms. But this time, although I didn't have my usual symptoms, my blood pressure did drop and it proved that it's been happening. It may sound weird to anyone that considers themselves 'healthy' but I'm glad there's something solid for them to go on, because if there's something wrong that they can actually find there's more chance of it being treatable which is what I've wanted for years and years. There's not much that can be done for POTS or low blood pressure, and even if I get given something for it it's not going to get rid of all my other M.E.-related symptoms, but an alleviation of just some of them would be nice. This is why I'm excited over this referral.<br /><br />It's going to involve a chest xray beforehand - I've literally only just found this out from my appointment confirmation letter - do you think they'll let me have a copy of the xray? I want to draw boobs on it :D I'm also having a tilt-table test, which is actually the scary part. They do the tilt table to see how your heart and blood pressure reacts when they change the posture of your body. The thing with that though is that obviously when I stand up I get very light-headed and faint - and this is what they want to replicate with the tilt-table test (e.g. by tilting the table upwards/ forward). And that's why I'm nervous about it. Because along with the weakness etc I get very nauseous and I'm scared that I'll puke on someone or something :P and I don't want to full on faint either. That would suck. Well I say that - I kind of do want to faint, to prove that this is such a big problem for me. But clearly no one really likes fainting so as I said I'm still a bit nervous. Hmmm.<br /><br />Anyway, today I decided to take a day off (since I'm usually doing uni work at the weekends) and went shopping. I wanted to go to Primark to get a jumper or two and just have a general look around - I also wanted to get some new boots because I've had a pair for a couple of years which are pretty much past it now, and the toes are so scuffed/ ruined that if I'm walking in the rain my socks get soaked. And that makes me grumpy. So I thought a new pair would be justified :)<br /><br />From Primark, as you do, I ended up buying loads more than I should have. Don't get me wrong, I'm not a fan of Primark at all really, but it's all I can afford so until I can afford to be more picky I'll just stick with it! I got a shirt jacket kind of thing, a jumper, a cardigan, a top, a pair of plimsole things (£4!) a jumpery top, a hairband, and a few other bits. While Primark is cheap, the jumpers were around £11-13 each so it added up to quite a lot and I felt horrific when the amount came up on the till. Ahhh I hate being a poor student! Then I went to New Look and got two pairs of boots - I know, I know, two... :( I felt bad. BUT one pair were £16 and the other were £24.99 so that's hardly bad for two pairs :) I got one pair of fluffy Ugg-but-not-Ugg ones because they're so warm (I had an Animal pair beforehand which were brilliant but again they're past it) and some knee high ones which I've wanted for ages (but flat, rather than with heels, because I can't walk in heels... which is a waste of a lot of the shoes that I have!). Then I went to this amazing shop called Evolution which I love, I think most of my Christmas presents will come from there :) I bought an incense holder - an Indian goddess I think it is - which is quite funny because the way she holds the incense stick makes it look like she's holding a light saber :D I got some incense sticks as well, including a pack of Frankincense ones which is my favourite scent (well, favourite out of the few scents I know). I've burnt a Frankincense one since I've been home but it was probably a bad idea as I'm tired and it made my eyes really sting. Smells amazing though :)<br /><br />I also had lunch in Soho Coffee Co today, which I'm going to write a bit about quickly - oh yes, I've become that arrogant dick who writes about their coffee shop experiences. Kill me now. But yeah, I went in there to look at the prices and they seemed reasonable, so I decided to eat there. But when it all added up it wasn't quite as reasonable as I thought - e.g. for a sandwich, a coffee and a little cold drink thing it came to nearly £8. :( I wouldn't have minded if it was remotely worth it but it so wasn't. I had a tuna and onion sandwich which had salad in it, but loads of the lettuce was brownish which freaked me out a bit; I had a caffe latte (i.e. meant to be espresso and steamed milk) but it was basically espresso and foam. There was about two inches of foam on top that you had to get through before you got to any coffee, and when I did get to the coffee it wasn't even that good. Anyway I'm not supposed to have coffee (my body has a tantrum when I do) so I thought I'd try and rectify it a bit by having a raspberry lemonade thing. It was okay, but it really wasn't anything special... it was like regular lemonade with a hint of bland. Brilliant. So I paid almost £8 for a really half-arsed lunch. I'm sure most places would add up to roughly that much, especially in Bristol which is expensive as it is, and especially now when everything costs so much more than it used to anyway. So my disappointment wasn't so much with the price but the 'meh'ness of what I got. I sound like I was really bothered by my disappointing lunch... I'm really not that fussed, it's just one of those things. I would certainly never complain, unless my sandwich had half a finger in or something :P but SoHo is meant to be one of those 'good' brands so I was just surprised that it was a bit shit. <br /><br />I should add I bought absolutely nothing for anyone else today. No Christmas gifts, nothing. I feel extremely guilty about that but I had a big fat list of things I needed to get and I just didn't get round to looking for anyone else. Oh well, next time :P <br /><br />I'm sure there are a few other little things to write about but I'm going to leave it there because my nausea is being a pain in the arse as per usual. Probably my own fault for having coffee but meh.<br /><br />Will write soon... doubtless more irrelevant, inconsequential shit, but never mind.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-21815176840647972802010-11-03T11:58:00.001-07:002010-11-03T11:58:41.717-07:00Just a thought.One of the most amazing things about history is that often, you can connect with people from the past better than you can with the people by which you're surrounded. You get to know historical characters as real people with real personalities and lives in which they were just as caught up as any of us today. You get to meet them, get to know them, and then you can end up mourning them when your association with them ends, or you learn of their death. I know that in studying suicide reports (which include the method of suicide, circumstances leading up to it, possible reason for committing the act etc), it makes me wish I could reach out and touch the people I'm studying and change the tiniest thing for them that would have made life that bit easier to tolerate and that little bit more worth living. It makes me sad to read of their deaths because in learning all the details about it, you get to know them and mourn them in a couple of hundred words. You also realise how they're just normal people in unfortunate circumstances which they found too hard to bear.<br /><br /><br />In a wider sense, though, it also reminds you that we're all going to be history one day. We are those historical characters that other people are going to look at with confusion, respect, empathy, fascination, disgust, amusement, regret, nostalgia...<br /><br /><br />The scary part is that it reminds you of how transient life is and how you really have to make the most of the time you get.<br /><br /><br />Carpe Diem, etc.<br /><br /><br />It makes me want to do something with my life that will last through generations and really have an impact in some way. It's so hard to know what that might be. But I think living in itself, however we choose to do it, and recording it in as much detail as you can, is one of the most beautiful things you can do.<br /><br /><br />You never know who might be reading your story in years to come and how much it might resonate with them, and how your life, as insignificant as it feels now, might give someone - or an entire age - a worthwhile insight for what it was like when we were alive. Even if it's just an insight in to the life of one person. It might even teach them something important (i.e. why it's bad to give bankers bonuses!)<br /><br /><br />And for those in the 1800s whose suicide reports I'm studying... I'm sorry that I never got to meet you and appreciate the wonderful things about you that I'm sure existed. I hope it helps that even if though it's 200 years later, someone is sorry that no one was there to save you and remind you what there was to live for.<br /><br /><br />I think we owe it to these people - and anyone who has left this world too soon - to live as fully as we possibly can, while we can, before it's our turn to join them in history.<br /><br /><br />Just a thought that I like to keep in the back of my mind :)chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-377105066293754482010-10-11T11:56:00.000-07:002010-10-11T15:02:55.291-07:00Fighting for the ability to do the tiniest things.So today I'm really feeling... well, ill. I need to write about it as I don't know what else to do with myself. <br /><br />I'm just starting third year of university - freshers' week has just finished. <br /><br />Last week I don't remember everything I did, but I know that I went to freshers' fair and signed up to loads of societies (albeit those that involve the least physical exertion) - art, knitting (I'm serious), public speaking, circus, massage, drama, etc.<br /><br />I knew full well when I was signing up for these things that I wouldn't be able to go to half of them but I was determined to try anyway because that's a lot of what university's about - extra curricular stuff, getting stuck in, meeting new people and since I don't drink and can't really go to clubs etc because of my illness (plus I'm not that kind of person anyway), I really depend on things like societies for my social life and to meet people who share my interests/ outlook on life.<br /><br />On Saturday, I went to auditions as part of the drama society. The auditions were around 5 hours long and by the end of it I had completely lost my voice and really suffered that evening in terms of headaches, tiredness, aching, feeling sick etc. Nevertheless, the first circus soc meeting was the next day and I really wanted to go - I've always wanted to be able to do fun stuff like juggle, do poi, just all those things that are awesome to be able to say you can do. So, I went to circus soc. When I started doing the first activity (poi) I was shocked at how quickly I needed water - probably within the first 30 seconds I was desperate for a drink. I sucked at poi, I really did, I kept hitting myself with them and wrapping them around myself and all sorts - I really was atrocious. Anyway, since I sucked so much at poi I then moved on to juggling. Again, I was really shocked (and disappointed) at how physically knackering it was - I needed water so so badly after doing the tiniest things and within about 5 minutes I was completely drenched in sweat and shaking from my muscles being so weak and over-worked. Just from juggling. Of course, being a complete novice, I kept dropping the balls so had to keep bending over to pick them up and obviously juggling involves your arms so they were working hard too but really, normal people don't struggle to juggle (rhyme not intended :P). I had got to circus soc at 4, and it finished at 5. I'd only been there for an hour but when it finally finished I felt like I'd been there a lifetime.<br /><br />I struggled to walk back (just like I'd struggled to walk there). I was shaking, dizzy and staggering... I was aching like crazy too. Home being a student house involves getting up 4 flights of stairs which I seriously struggled with too. <br /><br />In the evening Jon massaged my legs as they were so sore but it didn't really help (although it was very nice!). Today I woke up in agony everywhere... my muscles were just so so tender and stiff and it felt like I'd pulled every muscle in my body.<br /><br />Despite this, I had to go into university today to make an appointment to talk about transferring from one module to another, and I had a two-hour seminar. I initially panicked about how I was going to walk into university... it's roughly a 10 minute walk but I could have cried at the thought of it. I coped how I usually cope - I just did it anyway and tried to block out the pain, although when I was sitting in my seminar even then I could feel it every time I moved an inch. I wanted to nip into Sainsbury's on the way home to pick a few bits up, so being the stubborn git I am, I went and did so despite the pain and tiredness and dizziness. I really shouldn't have, but I did. <br /><br />When I got home I was exhausted. I made myself some food anyway as I hadn't eaten a lot, ate it while faffing around on the computer and then went to lie down. I woke up about an hour ago and everything was spinning like mad and I couldn't walk in a straight line when I tried to get out of bed. I'm feeling sick from the spinning. I'm not going to be able to go downstairs and get myself dinner because I really feel too ill. <br /><br />I'm also panicking about Wednesday. It's Monday evening now, and luckily I don't have anything to do/ to go into university for tomorrow, so maybe I can rest a bit, but Wednesday is absolutely packed. <br /><br />At 9am I have a counselling session. At 10am I have a two-hour seminar. Straight after that at 12pm I have an hour long lecture. From 2-4pm I have a life drawing class with the art society. At 4pm I have a physio appt, and from 6pm onwards there is an art social. I physically can't go to all of those things but I hate not going to things, I hate missing out on stuff. <br /><br />If I was well, everyday would be like Wednesday. I would be in the library studying, attending all my lectures and trying my best to do well with my course to my full ability, and going to society-related things all the time. <br /><br />But because of M.E/ fibro I'm having to closely monitor what I'm doing and decide whether I can even cope with a day of that, and try and prioritise certain things because I'm not going to be able to do them all. It's so frustrating for a person who is naturally inclined to get involved with everything. I don't like missing out on things. I want to take the opportunities available to me while I'm at university but with my body being the way it is I just can't, and it's so annoying.<br /><br />I need to go to counselling realistically. I need to go to be able to talk about what I'm talking about here, to go over the frustration and various other things. I need to go to the seminar afterwards because it's the unit I'd like to transfer to (even though I can't put myself down for it until Thursday) - and if I am able to transfer to it I don't want to have missed the first seminar. I need to go to the lecture afterwards since it's compulsory and important to find out what they're going to say. Clearly the art thing is optional but I NEED to meet new people, I really do... this is a prime opportunity to meet people who I get on with. I'll have to leave that early to get to physio, and I can't cancel physio because the appointments are hard to get. The art social is again optional but it's a chance to meet and speak to people who I may actually get on with and it's not like it's clubbing or something that I really would struggle with, it's just a pub thing so it could be really good. I want to go for my own satisfaction. I hate how I am having to consider not doing the things that I want to because I use up my very little energy doing the very basic things. If we think about activities in terms of spoons (for more info on the "spoons" concept go to http://www.butyoudontlooksick.com), let's say I have about 10 spoons of energy a day. Wednesday is the equivalent of about 50-60 spoons for me with all the stuff I would do if I did all of it. Obviously I don't have 50 spoons to work with, I only have 10. On an average day, even a shower uses up about 3 spoons. Walking to and from university often uses up about 3-4. Getting changed, depending on how much pain I am in, can use up about 2. I know this isn't a particularly accurate way of measuring but you get my point. I'm always in spoon-debt, and even the smallest things use up a significant proportion of my daily energy. The bigger spoon-debt I'm in, the more I'll suffer the next day and will start off with even less spoons than normal. You get the idea.<br /><br />ARGH the frustration and restriction is just getting to me so much right now, when I want to be involved in so many things and feel 'well' and just be normal. I can't explain just how isolating it is and how angry it can make you feel. And compared to a lot of M.E./ fibro sufferers I'm lucky - at least I can just about get to university and do some things - a lot of people can't even do that. It makes you realise just how much you took for granted before. Maybe I'm taking for granted the fact that I can still walk a little bit and I can just about study. But I'm still living a ridiculously-far-from-normal existence and I hate it. I wish more people understood exactly what life is like when you have this illness.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com4tag:blogger.com,1999:blog-4951342868631332645.post-87391825862200406462010-10-04T13:36:00.001-07:002010-10-04T14:09:16.329-07:00Physio appointment numero unoOkay, so I had my first physio appointment today. I feel the need to start off by saying that for once, I had a positive experience with the NHS! YAY!! <br />The physio was absolutely lovely. Sods law, she's on maternity leave as of the end of this week so my next appointment will be with someone different, but I've been assured by today's physio and by the receptionist (whose back he mended :P) that he's just as good.<br /><br />Today's physio was young and very friendly and smiley. I'm so gutted I don't get to have her again! She was dressed like my P.E. teachers used to though... I guess that's what you would expect... but it un-nerved me a little. I hated P.E. teachers.<br /><br />So, first of all the appointment consisted of having a chat and going over my symptoms. I'd been referred on the basis of having hypermobility which the physio confirmed, although I felt the need to point out I'm not really sure if fibromyalgia or ME are on those notes but they're problems as well - she said that the fibro was written on the rheumatologist's referral sheets but that ME wasn't... I presume the rheum saw them as the same thing. Hmmm. Anyway, so we had a chat about my symptoms and then she went through a checklist asking things like "do you have problems with X and Y?" and when I said yes, which was after explaining in detail my other symptoms, her reaction was "ohhh :( you poor thing!" which was very sweet... she was just as amused as me at how many things are going wrong with my body haha. <br /><br />Oh, also she was shading in a diagram of the front of the body and one of the back in the areas I said I had problems with... I was silently amused by the fact that in the end, both diagrams were basically entirely coloured in hah :D <br /><br />She asked me to rate my pain at its best and at its worst (0 being no pain and 10 being intense pain). I think the problem with that is that it's all relative and it's hard to compare pain at one time to another because you don't have much perspective. I said that I'd estimate that at best, it's a 2 and at its worst a 6/7 - I'm lucky that there isn't really any intense pain, it's more of a dull ache which is annoying because it's uncomfortable/ unpleasant, but not because it's intense or causing me distress. <br /><br />Anyway, after that she tested whether my nerves were working by getting me to push certain parts of my body against her hands (hah that sounds inappropriate!) i.e. my head, my feet, that kind of thing. It was really funny though, purely because my muscles were so, so shuddery and trembly... she was shocked at how tired they were. After doing all of that she concluded that while the power is behind the muscles (i.e. the nerves from my brain to my muscles are working correctly), they're just unbelievably tired and need a lot of strengthening (showed by the violent shaking). <br />She got me to to squats (she ended up having to hold on to me as I kept almost falling over), and lie on the bed (if you can call it that) and do certain things like bend my knees and move one to the side while keeping one still. That failed miserably :P both were shaking like mad and I found it really difficult to control the trembling and the movement of my legs, at which she commented "ohh you're even struggling to do this!" in a "oh gosh, I didn't realise you would be this weak when I first saw you" kind of way. It wasn't in a horrible way, I think she was just surprised/ felt sorry for my complete and utter lack of strength hahah. She established that during the knee thing, even my core muscles were shaking (i.e. stomach muscles behind the abs) and said that it's worth starting at those muscles and doing basic strengthening exercises to hopefully give those muscles a bit of control and stability thus helping my limbs in the same way. I don't know how long it'll take to notice a difference with that though - the problem is also remembering to do the exercises, I'm so scatty that knowing me it'll just completely slip my mind. I might have to write a big note to myself on the wall saying "REMEMBER PHYSIO EXERCISES" which might look a bit strange (and pathetic) to any visitors but oh well! <br /><br />Also, I had a doctor's appt after the physio. Convenient to get them out of the way on the same day, actually. I spoke to my doctor about my problems sleeping at night and after a lengthy chat about the possible side effects of the amitryptiline, I agreed to try it. I think the side effects she was worried about were the possibility of thermo-disregulation (I think that's what it was) as it can make you quite unwell apparently, and other than that there was just the possibility of being anxious/ jittery/ on edge. I don't like feeling like that so I hope that doesn't happen. Anyway, it's generally risky because I'm already on an anti-depressant, so adding another one in (amitryptiline is a mild anti-depressant which has sedative effects) can cause problems. I think the other risk was serotonin syndrome which I also hope I don't get :| but yes, overall my doctors appointment was also good. My doctor is always lovely, but I don't always come out with amazing outcomes purely because a lot of the time there isn't much she can do about most of the symptoms. Anyway, it's nice to be finally trying something for the sleep because it's such a pain in the arse. I hope the amitryptiline helps!<br /><br />That's all for now, I really can't think of anything interesting to say. <br /><br />Will hopefully post again soon :)chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com1tag:blogger.com,1999:blog-4951342868631332645.post-24862609399170897802010-09-05T06:46:00.000-07:002010-09-05T07:31:40.222-07:00New diagnosis...Hi everyone :)<br /><br />Just thought I'd post an update as I do believe it's been about a month since I last wrote anything. <br /><br />I've just got back from Sainsbury's and I'm supposed to be doing revision (I have an exam on Soviet Russia from start to finish tomorrow!) but I'm feeling a bit weird from Sainsbury's. I get this it a lot, it's hard to describe... it's almost as though things are shifting in front of me even though I'm staying still; like I've shifted a foot to the left but I haven't moved. It's like a fragmented dizziness, at the same time as getting hot and cold shivers and, if I've done something like shopping which involves more energy/ strength than I have, I'll be sweating, shaking and having palpitations. Not to mention aching if I'm carrying bags. Anyway, long story short, I thought while I try and get myself together to start on some more revision, I'd write this post ;-)<br /><br />Not a lot has happened in the last month but at the same time I've been insanely busy wth uni work - continual revision, constantly trying to chip away at my project and so forth. A week or so ago I was so stressed and had made myself so ill from working that I was vomiting... lovely. But I'm feeling a lot better now, particularly as I've only got one exam left (i.e. tomorrow) and have very nearly finished my project which will be handed in in a few days. Thank god. My exam on Wednesday (I only had two exams) was awful; I can't write on demand, especially in a pressured situation like exams as my mind goes blank. I also can't sit in an enclosed space concentrating for 2 and a half solid hours. I'm entitled to rest breaks here and there but they make no real difference. On Wednesday I gave up half an hour early as I couldn't cope anymore. I couldn't think of anything more to write, but I think if I was feeling okay I could have done. It's just that exams are literally the worst invention for people with this illness, heh... literally everything is against you. Ideally I could have a very long nap in the middle of it, or naps every half an hour. That's the only way I could actually cope with them/ perform to the standard I know I could if I wasn't faced with conditions that don't suit my body. But as it is at the moment I'm sitting there for 2.5 solid hours, trying to stay awake, trying not to feel too sick to concentrate, trying to numb the discomfort in my body, trying to work around the massive issues with word-finding I have, especially on demand (literally the other day I was getting stuck on every other word), trying to work despite the headaches getting more intense, trying to focus despite the mental exertion it requires to think so deeply taking more out of me than I have. I'm sure you get the picture. I suffered so much after the exam. I pushed myself to nip to the shop to get some food for that night but I was feeling horrendous and even worse when I got home... I was in so much discomfort I didn't want to be in my body any more. I just wanted to be free of it. There was nothing I could do for myself and Jon isn't here to help me with anything, so I was just lying in bed pretty much whimpering from the discomfort and boredom and frustration. Sounds pathetic I know, but I suppose it was really. <br /><br />Anyway, on Friday I had an appointment with a rheumatologist. I got that appointment because I'd mentioned to my GP recently that I have hypermobile joints (I can do all sorts of bendy shit with them that you're not meant to be able to do :P) and am getting pain with it too. She said she suspected I had hypermobility syndrome, so referred me for a rheum. examination. <br /><br />In short, the rheumatologist confirmed my hypermobility syndrome (although trivialized the discomfort it can cause, going on about how it is 'benign' - I know that but it still causes pain, grr!), and she also diagnosed me with Fibromyalgia. <br />I know a lot of people with M.E. also have Fibro, but I thought it was just intense muscle/ joint pain - and I do have those, but I wouldn't say they were constantly intense or anything. Anyway, I looked up the symptoms when I got home and realised that actually, those symptoms probably fit with me even more than the M.E. ones do. That said, they are very similar so it could be that I have one or the other or both. <br /><br />The symptoms that really struck me were:<br /><br />IBS, headaches, 'fibro fog', poor quality sleep, fatigue, stiffness, extreme sensitivity, tinnitus, paresthesia, restless leg syndrome, thermoregulation problems, jaw pain, cold symptoms (for me, these come on particularly if I've had a bad night's sleep), muscle twitches and weakness, dizziness, nausea, widespread pain, vision problems, trouble breathing etc. <br /><br />I know a lot of those overlap with the M.E. ones but meh.<br /><br />I didn't really like the rheumatologist I saw. She smiled occasionally but wasn't overly friendly or comforting, especially considering I was struggling to articulate things because of the brain fog, and she kept giving me puzzled looks as though what I'd said didn't make sense (which wouldn't surprise me, but she kept pushing me to answer in more detail/ in a way that she could understand but I couldn't!). It was also quite an embarrassing experience in general... I'll elaborate, which I'm sure some of you might find amusing ;) so embarrassment factors:<br /><br />1) I knew I would have to provide a urine sample when I got there, so I specifically banned myself from going to the loo before I left the house so that I would be able to go when I was there. Anyway, when I got there and was asked to provide a sample, the nurse directed me to the toilet and waited outside for me. Five minutes of trying later and I had to come out and admit defeat, saying "I'm really sorry... I can't wee on demand." - lol! I was telling one of my housemates about it later that day and he was like "that's what we call stage fright" - ahaha. It's very true!<br /><br />2) I dressed specifically in a short skirt and clear tights so that I wouldn't have to take any clothing off for the dr to be able to feel my joints. Little did I know that she would want to perform a full body examination and I would be made to strip down to my underwear anyway. I was not amused :P worse, she made me dress in this gown thing that didn't do up at the back - as in, everything at the back of me was exposed... my back, my bra, my knickers etc. The worst thing was when she was was feeling my spine, she firstly commented on my tattoo saying in a really un-enthralled tone 'oh that's interesting' and then she was feeling my spine, but I could feel that my knickers had ridden up slightly and were exposing far more of my bum than I was comfortable showing. That was awkward. :P Oh, even worse, she made me bend over to put my hands flat on the floor while keeping my knees straight. I don't want to imagine the view she got from behind :') <br /><br />3) When she was examining me when I was lying down, my legs and arms kept twitching and on numerous occasions I almost smacked her in the head.<br /><br />4) She was trying to bend my knees but when I bend them, they tremble violently (which means going up the stairs is fun, lol). So there she was holding my leg, bending my knee and my knee actually shook so much it went through her as well, ahahaha. <br /><br />5) She asked if I had had any hair loss. I said no. She then said "yes, you do look like you have a good head of hair" and I - totally out of it after only 3 hours sleep the night before - went, "yes... it's... I'm... thick *points at head*" ahahahaha. So in trying to agree that yes, I have thick hair/ my hair is thick, I ended up just calling myself thick. Brilliant. <br /><br />I generally got the feeling she thought I was really, really dumb from that appointment hah.<br /><br />Anyway, the outcome: I got the hypermobility syndrome confirmed, I got diagnosed with Fibro, and I got referred for physiotherapy which I'm happy about as I could really do with it.<br /><br />I'm not sure how I feel about the Fibro diagnosis. In a way I'm satisfied, in that I feel that it might be taken more seriously than the M.E. - it just seems slightly more accepted by the medical profession and therefore most other people as well. Similarly, it's nice to have another name to describe my symptoms.<br />At the same time though, I'm obviously disappointed that it's yet another thing to add to the list of problems, and as with the M.E. there's constantly that niggling worry like, "is this what's *really* wrong with me or is it yet another label for something they don't understand/ a dustbin diagnosis?" It's so hard to know.<br /><br />But I should probably stop pondering and get on with some revision now! I really don't feel like it and I'm really cold/ shivery/ tired/ bleh, but I think I owe it to myself to try and do well tomorrow.<br /><br />Will hopefully post again soon :)<br /><br />Much love xchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com1tag:blogger.com,1999:blog-4951342868631332645.post-11747306997729886582010-08-03T16:07:00.000-07:002010-08-03T16:27:26.388-07:0004/08This isn't going to be about anything particular. Just for my own reflection really.<br /><br />So, today I've felt sick all day and have had to force myself to eat or I feel worse from the hypoglycaemic-type-symptoms I get when I don't eat enough. I hate having to force myself to eat, it doesn't feel good at all and I never have any idea what to have; I have a very stressful relationship with food. I just find it such an inconvenience and in a way, a bit of a paradox - I don't have enough energy or mental clarity to decide what to have or to make it, and because haven't eaten, I still don't have any energy to do anything. Food upsets me everyday and I dread meal times, mainly for the energy I use purely thinking of what I can have. I'm also constantly worrying that not only am I not really eating, but I'm not eating the 'right' stuff, which makes me feel guilty and puts me off eating even more. <br /><br />I've been quite dizzy over the past few days. Today my muscles and joints are aching a lot too. I've been stuck in bed for most of the day feeling too nauseous, sore, dizzy and achey to do anything but I'm used to it really. I wish I wasn't.<br /><br />I still have a lot of uni work to do which is dragging me down. I have my 5000 word project which is running into endless problems because of the nature of it. I really need my tutor to reply to my email asking for help but she hasn't thus far, and it has to be in on September 10th. Eek :( I also have to revise for two exams which will be sometime in the first two weeks of September (I'm not sure when yet). One of the modules is 'Rethinking History', which is all about metaphysical concepts relating to writing and understanding history but it's far too complicated for my brain to work through, and so tiring trying to absorb it. My brain seems to be able to deal with things I know about already, but learning new information is really tough these days. I sound like an OAP! The other exam is about communism in Russia from start to finish. I loved that module, and I still do, I just don't quite know how to cover it all in less than a month. I'm also not sure how to do well in exams which isn't helping matters, especially since my department refuses to give feedback. Grrr. So I have no idea where I've been going wrong in exams (apart from having a 'slow' brain and feeling like crap all the time!)... I don't know what is wrong with my technique, I wish someone would tell me. <br /><br />Speaking of my department, there's this adorable Professor. Adorable because... well... let me show you what he looks like:<br /><br /><img src="http://farm4.static.flickr.com/3302/3554228239_dde239ed96.jpg"><br /><br />He specialises in the Tudor period, and he looks like he's walked straight out of it, too :D anyway, my point is, he keeps popping up in random documentaries! One of his other specialities is witchcraft/ paganism. The things I can think of that I've seen him in include a documentary about the Great Fire of London, a Sunday magazine for women in an article about modern-day pagan women, a documentary about women accused of being Maxine Carr and how these accusations resemble witch-hunts, and tonight he appeared in a documentary about 'wild swimming' in which he introduced the presenter to a statue-thing... no, seriously, it was "Alice, this is [insert statue's name here]; [statue] this is Alice." - it was so funny! I was telling my boyfriend's mum about how Ronald pops up in all these programmes and that very night, I was watching the Great Fire of London documentary with her and there he was. The next day she saw him walking by the uni library. Lol! Bless him. I would love to study one of the things he specialises in but there aren't any options that he teaches next year which is a shame, and I'm also not particularly strong when it comes to Early Modern history and I'm not sure what I could do relating to witch-craft.<br /><br />Anyway, I'm now rambling (as if I wasn't before...). I need to sleep. But I kind of don't see the point because if tonight is like most other nights it'll be broken, unrefreshing and frustrating. Meh. Will hopefully write about something more interesting soon.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-67306973023018412952010-07-29T23:33:00.000-07:002010-07-29T23:35:36.093-07:00M.E. Awareness VideoHey :)<br /><br />So, I've been considering making an M.E. awareness video for YouTube for a while now.<br /><br />The other day I attempted to make it - not as easy as I thought because ironically M.E. gets in the way!<br /><br />Thought I'd post you a little video of outtakes so far (just from an hour of trying to make the video) - I haven't managed to get *anything* I can use yet and that hour tired me out for the rest of the day. Lol! Enjoy!<br /><br />http://www.youtube.com/watch?v=EYKMzS3cyGAchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com3tag:blogger.com,1999:blog-4951342868631332645.post-15603753240254823502010-07-22T15:22:00.000-07:002010-10-04T05:19:49.461-07:00Insert imaginative title hereI'm afraid this isn't going to be a particularly interesting post, just a reflection of various things.<br /><br />Firstly, I would like to offer those that have read my CFS/ ME blog post the most heartfelt thanks <3 considering struggling with words and thinking clearly is one of the symptoms of the illness that I find the most frustrating, it feels very surreal to have had such positive feedback telling me I've explained the illness really well! You are all more than welcome to share it with your friends if it helps them understand in any way. I'm sorry it's so long, I wish I could have made it shorter but there's so much to say - I could have gone on for much longer as well! <br /><br />On the back of the blog post and the lovely feedback it got, I am planning to make a YouTube video based on what I talked about, purely as another way of hopefully raising awareness and trying to provide people with an insight into the illness.<br />I'm very excited about having the opportunity to share it in such a public way, though incredibly nervous because I'm self-conscious and I'm opening myself up not just to potential criticism for what I say, but also for how I say it and how I look etc. Because I was picked on in school I'm really worried about those sorts of things - but hopefully I won't receive any nasty comments so it won't matter ;-)<br /><br />In other news, I started Duloxetine today. I was on Venlafaxine 150mg. To transfer me on to Duloxetine smoothly, my GP moved me down to Venlafaxine 75mg which I was on for a week, which ended yesterday. I haven't had any side effects from the Duloxetine that I've noticed but obviously it's very early on so my body might not be responding yet. I do think that I'm feeling the drop in dosage of Venlafaxine now though (obviously a delayed reaction). Last time I was reduced to 75mg I felt very, very foggy mentally and felt like I was looking at everything and nothing was registering, that sort of thing. That sensation is back again. I hope it goes away over the next couple of days as the Duloxetine kicks in but we'll see. On the plus side, today's actually been good M.E.-wise. I haven't been as bad as I usually am so it was nice to have a bit of freedom with what I could do. <br /><br />What is bugging me at the moment is uni work. I have a 5000 word project overdue from May. I can't concentrate for long enough, I can't analyse deeply enough and I can't think clearly enough to grasp the ideas I want to write about, to conceptualise such complicated stuff. I study History, and the question is "how is the body depicted in Leni Riefenstahl's 'Olympia'?" (a film from 1936) so it's even harder - trying to work out how to analyse the film, what order to do so in, what to say about it, what I want my argument to be, which historians I'm going to bring in, and how to make it 'historical' rather than something more suited to film studies. I'm not very good at analysing visual images, especially when it's a documentary about the Olympics :| I also have two completely different opinions about the film but if I write them both I'm just going to contradict myself. What's worse is the department are so fussy and so bloody finicky about what they like in an essay, I have no idea what makes a 'good' essay and am struggling to work out exactly what it is I'm meant to be aiming for. I'm just really hitting a barrier with this and it's very very very frustrating as all I want to do is finish it and have a break, and not feel guilty for not doing uni work. I have two exams in September that I need to start revising for but the longer I work on the project the longer I put off exam revision as I can't cope with doing both at the same time.<br /><br />Other than that there's not much going on, but eurgh I'm struggling.chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com1tag:blogger.com,1999:blog-4951342868631332645.post-86885321863124099292010-07-18T13:40:00.000-07:002010-07-21T01:55:31.391-07:00The Invisible IllnessSo, I'm struggling to sleep, which often happens.<br /><br />I have been thinking about a short blog post I read earlier, and since I can't sleep and I keep having ideas going around in my head about writing my own take on it, I thought I'd jot some stuff down.<br /><br />The original post:<br /><br /><a href="http://the3six5.posterous.com/july-16-2010-scott-jordan-harris">Clicky</a><br /><br />Now as much as I'd love to be able to write as eloquently as that, I sadly can't. I don't know why he gets the mental clarity to write like that and I don't... or maybe I just don't have his talent. Either way, JEALOUS. Don't say you weren't warned about how little sense I make sometimes. ;-)<br /><br /><big><b>Anyway, yes. CFS/ ME. I has it. *Thumbs up*</big></b><br />I think I've had it since I was 17ish.<br /><br /><b><u><big><big>What is it?</big></big></b></u><br /><br />No one knows what causes it. The symptoms differ for most people. But CFS/ ME is <u><big>essentially a label for a set of symptoms</u></big> which plague people around the world, from all different backgrounds and walks of life. I don't like the name of it... CFS - Chronic Fatigue Syndrome - is just plain <i>insulting</i>. It sounds like the issue is purely fatigue. I WISH it was just that, as debilitating as that is on its own. And M.E.? Firstly, that stands for Myalgic Encephalomyelitis which, when you have a brain like cotton wool like most M.E. sufferers, is ironically difficult to spell and remember how to say. Secondly, if you don't put the dots in it just looks like a capitalised 'me', which is confusing ("I have ME" - "you have you? Eh?" - haha). And can also lead <b>dicks like Matthew Wright</b> to quip "haha, no wonder it's called M.E., because it's all ME ME ME" - fucking imbecile. I hope he wakes up with it one day and feels like a <u>turd</u> for ever saying that.<br /><br />It's extremely <big><b>misunderstood, stigmatised and most of the time I feel ashamed to say "I... er... have M.E.".</b></big> If I say that, I usually say it while making inverted commas with my fingers. Why? Because it's literally <u><big>just a name for a neurological condition no one really understands</u></big> - it lacks definition in the medical world, let alone our everyday life. But I am embarrassed to say I have it, because of its reputation - <big><b>people think 'ME sufferer' is synonymous with</b></big> 'attention seeker', 'hypochondriac', 'lazy', 'tired', 'depressed', 'unmotivated', 'incapacity benefit bullshitter', 'someone who is full of shit', and, according to one of my family members, 'the effects of radiation from modern technology'. Riiiiiiiight. I may be more sympathetic to the latter if any of my symptoms went away when I was away from all technology, but alas this is not the case.<br /><br /><i>(EDIT: someone mentioned to me the inclusion of 'depressed' there sounding like that's not a valid thing by itself. That wasn't intended - what I mean by 'depressed' in this sense is people thinking that you must be in a depressed mood, and that's why you're tired or don't feel well. A depressed mood is entirely different from the illness depression, which isn't what I was alluding to there. Sorry if that offended anyone!)</i><br /><br />Since no one knows what M.E. is, it feels silly to say you “have” it. I tend to use it simply as a label to describe my symptoms as I haven’t found another one that fits them better yet. <br /><br />I think people assume that M.E. sufferers are essentially <big><u>Andy Pipkin from Little Britain</big></u>. They pretend they’re disabled, and when no one’s looking, they get up out of their wheelchairs and run around. Lol, if only :P<br /><br />As I've alluded to in the title, it's an invisible illness. You can't really see the symptoms - well, correction, all you can see is our reaction to what we're feeling, but not the symptoms themselves. Often we'll look <big><u>generally rough and tired and "blergh"</u></big> but that's all you can really see, unless we full on collapse or something. But that's unlikely to happen in front of you, which makes it more difficult for us, as it's just another reason to believe we're making it up :P<br /><br /><a href="http://www.youtube.com/watch?v=EIGX7fDIjYU&feature=youtube_gdata"><u>Watch this, because it’s FREAKIN’ AWESOME!</u></a><br /><br />SO MANY SUFFERERS have had the above experience with doctors. I know I have. <b>They treat like you like a hypochrondriac/ imbecile/ child/ attention seeker and it's so upsetting.</b><br /><br />There is <big><b>no universal treatment </b></big>currently. Some people get better naturally, some people have treatments that make them better, some people try every treatment under the sun and don’t get better. Some people try something, get better for a while, then relapse again. There’s no pattern. And every potential treatment is very expensive, so it’s difficult to know which to try, if any, when they could all be useless. <br /><br /><big><b>People make jokes.</b></big> Yeah, it's funny. You've got to have a sense of humour about stuff like illness and whatever. But sometimes it can <big><u>hurt.</u></big> When someone says "hah, what are you doing up before 11am?" or "what are you doing awake!?", that kind of thing - yes, it's said innocently and with no bad intention. But trust me, I don't want to be asleep half the time. I don't want to not be able to get up most days. Though for clarification, I'll often have a sleepless night and be so fed up that I'll get up at 6am, and go back to bed at 10am, for example. So a lot of the time I'm ironically up before the people that take the piss of me 'waking up late'. It's all very well to make jokes about laziness, or about sleeping too much, or about being a hypochondriac, but <big><b><u>who would choose to actually live like this?</big></b></u> To be in bed half the day either sleeping or not feeling like getting up because you're too weak and dizzy and nauseated and tired? I could go on but my point is, <u><big>this lifestyle is not a damn choice.</big></u> I have so much I want to do, particularly active stuff. Why would anyone choose a life stuck in the house over getting out, seeing the world and doing things? It's BORING AS HELL. Why am I on the computer half the day? Because I have nothing else to do. I fall asleep after a few pages of a book, even. Facebook is my social life for the majority of the time, because I often can't go out and have a real one. <big><b>No one wants to have to admit that.</b></big><br /><br /><big><b>I think YouTube videos trying to raise M.E. awareness perhaps propagate the situation with people thinking we're just being miserable self-pitying cretins.</big></b> You know, the ones consisting of a montage of really melancholy music, the pictures of people looking tired and fed up, a few token words about what it's like to have the illness. It does look self-pitying and like M.E. is a cult of hypochondriacs. Hats off (I'm not wearing a hat, but still) to the people who make these videos because they do get across a certain aspect of it, and their intentions are to make people more aware of the illness... but yes, it's recently I've realised that maybe that's not the right approach. <big><b>These videos fail to demonstrate that many of us have a sense of humour, just get on with it, and don't use the illness for attention or to justify staying in bed for that extra hour.</b></big> <br /><br />I don't want sympathy, just understanding. I can't speak for anyone else, but I personally can't stand it when people are like 'poor me'. Maybe this blog sounds like that's my perspective but I can assure you it's not, it's <u><big>just all fact and I'm writing it down for the purpose of clarification and understanding, nothing else</u></big>. Most M.E. sufferers I know are the most <b>brave, strong people</b> you could possibly meet. I don't think I'd count myself under that (although I am stronger than people seem to give me credit for), but there are certainly many of them. They deserve the credit that they really don't get. People are seen as amazing for coping with other neurological, physical disabilities such as MS, MND, and endless other afflictions... and yet M.E. <u>still</u> isn't taken seriously. Sufferers are just stereotyped and seen as wimps. But to cope so well with what they do is just admirable. So many of them have an<big> <b>amazing sense of humour, brightness, and joy</b></big> that they bring to the lives of others. <b>AYME</b> (Association for Young people with M.E.) is a community I'm lucky enough to be a part of and its members are just so loving and caring. To have the strength to be that way despite everything is incredible.<br /><br /><big><b>I don't know if I'm going to get better, and if I am, when that will be. None of us do. We can't plan for our futures, we can't 'hope' for anything specific in our lives because it might not be possible to do those things. It's such a demoralising feeling and it makes it so hard to motivate yourself in everyday life.</big></b><br /><br />I'm not going to go through my past with this, and I'm not going to tell you my life story. But I want to be a little more open about it, because <u><big>ultimately it affects my everyday life, most things I do, my ability to socialise, who I am, etc etc etc.</u></big> I often allude to the illness in my statuses but it never really gets across the whole picture. <big><b>I don't mention it because I want sympathy, I mention it because I'm honest in my statuses about what I'm feeling and what I'm feeling is mostly connected to what the illness makes me feel physically and mentally.</b></big><br /><br />I would like to clarify a few aspects of it... because I think people who see my statuses must think I'm a raving bloody looney, or have the most random days and friends imaginable. People reading my statuses must be like <u><big>“what the bloody hell is wrong with her now!?”</big></u> Hopefully my list detailing some of the effects of the illness will explain some of this. <br /><br /><i>I hope this isn’t misconstrued as a ‘poor little me’ list. I don’t think that, and it’s not intended to be anything like that. I’d just like to have a place where I can write it all down for people to look at if they want to understand the way I am.</i> <br /><br />(I doubt this is going to have much logical structure, it's going to be more a stream of consciousness than anything. I don't do logical structure, lol). <br /><br /><big><big><b><u>My symptoms and how they affect me.</big></big></b></u><br /><br /><big><b>Talk like Yoda do I often.</big></b> The effects of M.E. are mainly neurological - sadly, that means they affect most of the body. That <big><b>includes cognitive ability</b></big> - i.e. thought, language, communication etc. It takes a LOT more effort to spell things properly these days, to get my words in the right order, to remember what I said 10 seconds ago. I forget what I'm talking about in the middle of a sentence. If I tell you a story, it will be the most long-winded crock of shit you've heard in a while. Some days I feel like there is such a <big><b>thick fog</b></big> in my head I'm not going to be able to anticipate what I will be doing 30 seconds from now, and the task of thinking what to make for dinner feels like a rocket science mission, let alone actually cooking it. I can't remember the words I want to use. With essays for example - I know I will have a really great concept in my head, and I have the intelligence and vocabulary stored in my brain to express it well - but actually accessing that memory and that information is at times impossible. <big><u>It's constantly having the word you want on the tip of your tongue but not quite being able to get it out. Cross words are the most irritating activity ever.</u></big> I struggle to generate ideas, or find inspiration for anything. <u><big>I feel like a bit of a zombie in cognitive terms.</u></big> I feel generally 'slow'. I struggle to follow conversation. Before being diagnosed with M.E. (I had it, but it hadn't been figured out yet) I was <big><b>diagnosed with dyslexia.</b></big> Did I have dyslexia when I was younger? No. I've always been really good with spelling, words and language. But I've got <i>acquired</i> dyslexia, i.e. it's developed at some point since getting M.E., I presume. It fits in with the cognitive difficulties very well.<br /><br />Even if I'm having a day of relative mental clarity, that doesn't mean I'm free of physical symptoms. So while mentally I might be able to concentrate on uni work for example, I might be feeling like I'm going to throw up at the same time, or have a really bad headache, or not be able to stay awake, and therefore can't do anything constructive.<br /><br /><big><b>M.E. is a hypochondriac's heaven.</b></big> "I feel sick. I've got a really bad headache. I'm unbearably tired. I can't stay awake. My eyes have gone all blurry. I have shooting pains in my arm. I’m having heart palpitations. My back aches. My wrist hurts. Daylight is hurting my eyes. My legs feel like they have got anchors stuck to them. I'm dizzy. I have a sore throat. I can't stand up without feeling like I'm going to faint. I’m so weak. I can’t walk anymore." you get the picture. <br /><br />I get colds and feel run down all the time. Especially if I don't sleep. If I don't sleep I'll wake up sniffly and with a sore throat. That part of it doesn't bother me, they're only cold-like symptoms (I would happily have a permanent cold instead of M.E.!), but it's just proof of how easily I get run down.<br /><br />It feels like my skeleton's too weak to support my body. That just about sums up the weakness part of it. <br /><br />It varies with everyone. Just today I was talking to a friend with M.E. who had just gone for a run. You might not expect that we should be able to do that, but some can, it's just that they'll suffer for it afterwards. With me, I can't run more than a couple of metres in the first place without hyperventilating, being out of breath and feeling faint. <u><big>People have different abilities.</u></big><br /><br />I live a vampire's existence. I'm whiter than white. That's a natural thing, I'm naturally very pale. But to be fair I don't go out much or see much daylight either. I sleep a lot in the day and often have sleepless nights, though the two aren't always connected. <big><u>Daylight hurts my eyes</u></big> (no, really, I'm serious). I think if I lived in darkness for the majority of the day I'd cope better... but everyone needs the benefits of sunlight or your body's chemicals screw up. <br /><br />Speaking of chemicals, I have chemical sensitivities. To things I use on my body, and things I put in it. Medication has bizarre effects on me. <br /><br /><big><b>I can never predict how I'm going to feel on any given day. Or, for that matter, at any given time. A day can start off okay and end horribly, and vice versa.</big></b><br /><br />You'd think the amount of sleep I get would make a difference... but it doesn't. <big><b>When I wake up it's like I'd never been to sleep.</b></big> It's so unrefreshing it's like there was no bloody point in it. But I can't help going to sleep either, even if it is pointless. I can't stay awake sometimes, I physically find it so hard to fight it, my eyes are burning and my eyelids are closing by themselves, even if I had a good deal of ‘sleep’ the night before.<br /><br />I have to <big><b>sit down in the shower</big></b> because I feel like I'm going to faint if I'm standing. <br /><br />If I get up too quickly in any situation my vision goes for a few seconds and I have to lean on a wall as I feel like I'm going to faint.<br /><br />I go through phases of having very little appetite and will lose weight... then I'll go through more normal phases. But I never really like food because of the nausea, and because of appetite issues... yet I don't really lose much weight in a 'normal' phase because I can do so little activity.<br /><br />I feel nauseous and have a headache about 80% of the time. <br /><br />I get hypersensitive to sound and light. Speaks for itself really.<br /><br />I have hypermobility syndrome. I don't know if that's related to the CFS/ ME or if the symptoms I get are entirely separate. But essentially I can move my joints in ways I shouldn't be able to. They're constantly clicking, too. They get really sore easily. My hips, wrists, ankles and knees drive me crazy. <big><b>I'm like 21 going on 80.</b></big><br /><br />I really struggle with stairs. But I am embarrassed about it, so I try and hide it. Going up stairs makes my muscles burn. Same with hills. <br /><br /><big><u>I struggle to breathe on exertion. It can come on after 10 minutes or 30 seconds, it varies all the time, but I have an inhaler to help with it.</u></big> It helps a bit, but it doesn't make it stop. It also makes me really jittery. I have to rest all the time and have loads of stops. Hills have become my worst nightmare. Sometimes I can walk for half an hour, sometimes I can only manage a couple of minutes.<br /><br />If I overdo it my symptoms can include being feverish, hot and cold sweats, aching everywhere, intense nausea and headaches... in fact I can't be arsed to finish the list.<br /><br />The muscle aches are often overwhelming.<br /><br />I sweat so much it's not even funny. I didn't used to be sweaty, that's the annoying thing. But now, I'll walk for 30 seconds and my back becomes a waterfall and generally I'm all clammy everywhere. Yummy.<br /><br />I don't manage to eat big portions.<br /><br />I can't write stuff by hand anymore. If I can it has to be short. My hand/ arm aches too much and my hand and fingers will cramp up and they ache so much. Speaking of cramp, my hands and feet get it all the time.<br /><br /><big><b>It's often easier to pretend there's nothing wrong than to be honest.</b></big> Because people misinterpret the honesty, or they misunderstand the illness, or it takes too much energy to explain what's wrong, or it's embarrassing, and you feel judged.<br /><br />Sometimes my jaw aches too much to eat anything I have to chew loads. I'll do it anyway but it hurts, and it's not nice. Sometimes if I push it too much I end up slurring when I speak because I don't have the energy to move my jaw. <br /><br />When I'm in the shower my arms feel too heavy to lift sometimes and it's particularly hard to wash my hair. I hate holding the hairdryer afterwards as well because my arms feel too weak to hold it. How pathetic does that sound...<br /><br /><big><u>I have random food sensitivities.</u></big> I can’t drink coffee. Caffeine isn’t the issue, it’s the coffee itself – I can’t even have decaf. Which is REALLY ANNOYING because I love the taste of coffee. If I drink it I get an upset stomach, nausea, cold sweats, headaches, trembling, etc. Sugar seems to affect me more than it used to. I can have a bite of a chocolate bar before feeling sick... then that’s it for a few hours or until the next day. I still eat sweet stuff like biscuits and cake, but not concentrated like in pure chocolate or sweets. Sugar seems to give me the same ‘buzzy’ feeling as when I can’t sleep, but at the same time also a headache, nausea and general ‘blergh’ness. I also can’t drink alcohol. It exacerbates the physical stuff I feel... the fatigue, the nausea, the headaches, the ‘slow’ness, the out of control feeling, the sweating, ... on occasion it can make me giggly which amuses me and others I’m with but it really isn’t worth it considering all the other things I get with it. Then I get the same hangover type feeling everyone else has after drinking, but I get it much sooner, and even if I’ve only had one or two glasses of wine. Does it sound worth it to you?<br /><br />My temperature buggers up all the time. It can be boiling hot and I can be shivering with cold and vice versa. I can be warm but shivering, cold but sweating.<br /><br />I swear to god I’m the most forgetful, scatty person I know.<br /><br />I get muscle spasms. Not particularly often, but a couple of times a day. <big><u>My arm will just randomly flail out. My leg will fly in the air. I’ll just spontaneously twitch.</big></u> And every time it makes me jump. Though I always end up laughing at myself. :D<br /><br />Sometimes I will come across as though I’m drunk. Not on purpose, and not even for any particular reason as far as I’m aware physically. It just happens sometimes, I’m just suddenly more mentally slow than I normally am and slurry and tired so all that in combination makes for a very thick-sounding Charlotte.<br /><br /><big><b>I feel like I have a giant permanent hangover.</big></b> That's the most simple, short way of putting it.<br /><br />A lot of people, when told that someone has “Chronic Fatigue Syndrome”, will go “yeah and? I get tired too” – no you don’t. Believe me you don’t know the first fucking thing about tired!<br /><br />I feel like I go on about the M.E. all the time to my healthy friends. I feel so guilty for doing that but I panic that they won't understand why I don't seem with it, why I look down if I do (I'm probably just feeling really unwell), why I'm not very engaged with them (normally because I'm half asleep)...<big><b> it's like I need to always reel out disclaimers about what I'm like on any given day and I have to explain myself.</big></b> They never ask me to justify my behaviour or how I'm coming across, but I'm embarrassed that they might think that I would be like that normally.<br /><br />I'm not going to pretend I was particularly active before I got like this because I wasn't. I couldn't be bothered to do much like any other teenager. But what I do know is that if I wanted to do something I could, and also I wouldn't suffer afterwards. <big><u>Now I miss simple things </big></u>like going for a really long walk, going for a run, going swimming, doing anything sporty.<br /><br /><big><u>I'm really struggling with uni.</u></big> Admittedly, I'm lucky to even be at uni when others aren't well enough. But I massively struggle with reading because of the dyslexia issues, and because I get so tired after a couple of pages. I find it hard to take in what I do read, and what I do read is never a lot (and certainly never enough). My version of 'wide reading' consists of scanning a few pages of a few books. Essays are a nightmare. Problems with word-finding, ideas, expressing concepts, thinking things through, conceptualising structure, etc... make it pretty much torture to try and write something decent. My term-time existence consists of uni work, sleeping and feeling crappy.<big> <i>What kind of uni experience is that?</i></big><br /><br />I push myself too hard and I'm always feeling guilty and in denial of sorts about the fact that I haven't achieved what I want to. I never feel like I've done enough. Asking myself "what have I achieved today?" is not even a worthwhile activity, it's just upsetting.<br /><br />My AYME friends write posts on my wall which to most people must look like the most random things ever. "I walked 20 metres today! YAY!", "I got into the shower with my socks on", etc. Some sufferers celebrate walking a few metres because they struggle to do so. To actually manage it is a massive achievement. We also like sharing stupid little things we've done, i.e. "today I got into the shower with my socks on". <br /><br />I might <big><b>come across as anti-social sometimes</big></b> because I don't go out much. Believe me, that's not choice - and if it is, it's just because my past experience tells me that the best idea is to stay in and not push myself or I'll suffer. I can go out and socialise for about an hour and then I’m exhausted.<br /><br />I’ve lost the ability to tell what’s M.E, what’s a bug or virus or general illness, and what’s normal. I don't remember the last time I felt normal, or how that felt.<br /><br /><big><u>Not being able to sleep is the most irritating contradiction.</u></big> You’re too sleepy and tired to do anything with your body, let alone anything constructive. But you’re too ‘buzzy’ to sleep - you have this overwhelming desire from the core of your body to be moving, to be ‘doing’ something. It hurts to open your eyes and they’re burning with tiredness but you can’t keep them closed because you just want to open them again. I fidget, because I can’t keep still. Even though every time I fidget it reminds me that something hurts or aches or something is uncomfortable. I’m never comfortable. No position is quite right. I jiggle my legs and my feet and I flail my arms everywhere even though my muscles burn afterwards. I just have this insatiable desire to be moving and to be doing. It’s like the times I can’t sleep it’s my body’s way of saying “I’m BORED of all this sitting around, DO something” but physically doing it feels impossible so it’s like being in limbo, you don’t know what to do with yourself. <big><b>It’s almost like a swarm of very irritated bees being stuck in a jar. Or being locked in a broken down car – you can’t call anyone, and you can’t get out and walk. You’re just stuck in it with all that frustration of being stuck somewhere you don’t belong and don’t want to be, in something that isn’t working how it should be, and isn’t getting you where you want to go.</b></big> In fact I think that’s a damn good analogy *pats self on back* :P<br /><br />On an average day, the <big><b>contents of my handbag include</b></big>: a bottle of water (any physical exertion makes me insanely thirsty), ibuprofen, metaclopramide, a cardigan on a hot day, sunglasses (even on a day that isn’t sunny), an inhaler (even though I’m not asthmatic, but just for the breathing issues I get with exertion)... I feel the need to be prepared for whatever my body decides it’s going to feel that day.<br /><br />I held a small, newborn baby yesterday for about 15 minutes. Each of my arms felt like they weighed about three stone for the rest of the night.<br /><br />I’m <big><i>petrified of being in a situation where I’m overwhelmingly tired and can’t get home and go to bed.</i></big> Sad, but true. I'm also afraid of feeling really unwell, especially really nauseous, in a social situation where I'm trapped and I can't leave. I’ve been sitting in lectures where I just can’t keep my eyes open and am nodding off but painfully aware of the fact that it’s an inappropriate situation to be doing so. The energy it takes to fight that heavy sleep is just too much. On so many occasions I’ve trundled home after a lecture – <big><u>I’ve bumbled along like a drunk snail, but one with a rocket up its arse</u></big> - because I can’t get home quick enough to flop into bed and just let it take my weight and my exhaustion.<br /><br /><i>I lack motivation to do most things because what’s the point when I’m only going to feel physically shit anyway and then have the mental frustration of that adding to my tiredness and lack of energy.</i><br /><br /><big><b>Mental exertion --> physical consequences.</b></big> You’d be surprised. The more I think the more tired and achey I get. Uni work is a nasty paradox. I know I have to be doing it, I know I need to completely engage with it and throw myself in, but I know that the deeper I get into it the more I’ll suffer physically, the more tired I’ll be, the longer I’ll feel weaker.<br /><br />If I overdo it my neck and armpit glands swell up and are sore. That’s not when the symptoms start though, it’s just a sign that I’ve done too much; the symptoms are there all the time.<br /><br />I saw a status on an ME sufferer’s Facebook today which really made me smile. “Q. Is there any time of day during which you can’t sit an examination? A. Yes. All of it.” – that pretty much sums it up.<br /><br /><big><b>I HATE people doing things for me, I really do. I feel uncomfortable about it.</big></b> I don’t like sympathy. I like to get on with things, I like to be independent, I like to do things myself, I don’t like to feel that I can’t do things, or feel restricted. Jon is amazing and I don’t know what I’d do without his help, but I wish it didn’t come to that and I wish I didn’t have to be dependent on his kindness sometimes.<br /><br />I passed my driving test a couple of years ago (after taking numerous tests because I couldn’t concentrate and kept making silly mistakes and failing). <u><big>But since passing I haven’t let myself drive because my concentration is that bad, I don’t trust it.</u></big> If it’s just myself I’m putting at risk, fine – but when it’s other people it’s not fair. I used to really enjoy driving lessons. I got to drive without worrying too much if I did anything silly because the instructor was there with their own controls and could tell me or remind me what to do. But when I’m on my own and it’s left to my own memory to look at road signs and take in what they mean, to focus and not feel sleepy, to do loads of things all at once... it just doesn’t happen, and I’m in a daze doing things on autopilot which may or may not be correct. That scares me.<br /><br />M.E. sufferers know the meaning of ‘wasted time’, sitting in bed being bored, wanting to do something constructive but not being able to.. <br /><br />When I leave uni, if I’m not any better than I am now, I’m probably going to have to be on <big><b>incapacity benefit</b></big> and be bored at home for god knows how long. I can’t emphasise how much I don’t want that - I didn’t go to uni and work hard on a degree just to sit around on my arse, to work part time for the rest of my life, or to do nothing with it, to feel useless and incompetent and incapacitated. I went there to study what I love and to give myself a chance at a career I enjoy. I LOVE being busy, having stuff to do, being needed, having a routine, having a challenge. But that isn’t going to happen any time soon and I don’t see a choice but to stay at home. I couldn’t work full time – and I could probably work part-time just about, but only with things in place to support the fact that I need a lot of rest-breaks for as long as I need each time, that when I need to sleep I need to sleep and find it very difficult to stay awake, sometimes my nausea is overwhelming, sometimes I can’t face light and noise, sometimes my headaches get really intense, sometimes I seem drunk, I can never concentrate... I could go on, you get the picture. <big><b>But do you know any part-time job that would happily put up with all those things from an employee? I certainly don’t.</b></big><br /><br />I could write so much more about this, I could write and explain more symptoms, talk about more experiences with it, etc. But it’s already too long, and my brain feels like mush (I’ve written this over two days). So I’m going to leave it there. <br /><br /><b><u><big><big>What I've learned</big></big></b></u><br /><br />Despite all the crappy parts, <big><u>I have learned a lot and been lucky in many respects.</u></big> I'm certainly lucky to be as healthy as I am in comparison to a lot of people I know who are more severe than me.<br /><br />Apart from a shitty life, lol, I have actually gained things from having M.E. such as a bunch of amazing friends and acquaintances. I feel blessed that I've met such wonderful people through this illness.<br /><br />I've also been fortunate enough to learn a lot of lessons, including: just how precious health is; generally what my body’s telling me; <b>just how much difference it can make to say something nice to someone, and to show a little love to people you don’t even know that well</b>; that we should appreciate the small things; that there are some people who aren't worth my precious time and energy; <u>just how strong the human spirit can be and the human capacity for compassion and bravery</u> (not really my own, I’ve just been struck by other people’s); that ‘achievement’ can be defined in any way and can consist of things taken for granted by those with a good deal of health; that I may have less energy than I used to but I have a hell of a lot more love to give from what I’ve learned and the people I’ve met; an awareness of just how judgemental people can be towards people who have a disability and that there is still an unbelievable amount of stigma attached; that life is too short to care what people think of you too much; that people don’t seem to understand that you can have physical problems without being mentally handicapped; that a supportive community is a wonderful thing; that brain fog can create some hilarious situations; I could go on for much longer.<br /><br />I think even if and when I’m recovered some day, I’m still going to be involved in M.E. charities. Even on days I’m not feeling too bad, I’m thinking about everyone who is housebound or bedbound and counting myself lucky. Even when I don’t know people with M.E. (though I hope to keep in contact with those I do), I’m still going to do my best to raise money for ME charities, offer support to those who are suffering... because I’ve got to know and love so many sufferers and see how awful it is to go through what they do everyday, and I empathise with a degree of it myself. When you have personal experience of an illness like this, I imagine it’s hard to let go and just move on if and when you get better because you’re thinking of those who are unfortunate enough to still be stuck in the bubble.<br /><br />I hope that if nothing else, this has helped at least one person understand M.E. a little better, and perhaps refrain from judgement when dealing with anyone that has it because it’s really not as simple as you would think from the stereotypes. That will justify the energy it took me to write this. <big><b>M.E. maybe one of those illnesses you cringe at when you hear it out loud because of the reputation it’s got - but believe me it doesn’t deserve it, and you’d be surprised just how debilitating it can be. </big></b><br /><br />I hope that this has done justice to the M.E. experience, even if it’s specific only to my own symptoms.<br /><br />I would also like to take this opportunity to <u>thank people</u> for being so wonderful and understanding about the way I am – particularly Jon, Erin, Zoe, Chris (I accidentally left him out before, but he's been just as awesome as everyone else) and of course all my AYME lovelies. :)<br /><br /><big>Oh, last point: I'm eligible for a free bus pass. I think when I get it, I'm going to rename myself Doris.</big>chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com8tag:blogger.com,1999:blog-4951342868631332645.post-33941310052671007012010-06-24T18:04:00.000-07:002010-06-24T18:09:01.102-07:00Note to self...Do not eat Creme Eggs when relapsing.<br />I feel so so sick. I only had one... but my stomach... oh my god.<br />Last time I do that.<br />I don't know if it's specifically Creme Eggs, chocolate all round (I'm not sure if I've eaten chocolate during a relapse before!), or if it's just tonight or I would have felt rubbish anyway.<br />But either way I need to try and remember to avoid Creme Eggs. >_><br />Eurghhhhh my tummy :(chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-29994599565066399462010-06-23T01:08:00.000-07:002010-06-23T02:11:10.035-07:00Various things1)I didn't sleep at all last night and this morning my jaw is aching really badly to chew. I don't think that's a very good thing :\ <br /><br />2) Yesterday me and the boyfriend were supposed to go for a picnic but when we got to Sainsbury's to get the food etc for it I realised I really wasn't feeling well and was exhausted/ not up to walking the length we had to. I was way too hot anyway (I'm really, really pale and I think my complexion was designed for a Scandinavian climate, not the hot summers we occasionally get in England!), and on top of that I felt sick, really weak, shaky, achey and just all round rotten. I felt really guilty to tell him I didn't feel good but he was fine about it and we went home so I could go back to bed.<br /><br />3) The other day I felt really low after something triggered me to think about what other people might think of me etc. I won't go into it but I posted it on AYME, not really expecting any support or anything, I just wanted to express how I felt somewhere. But I got THE nicest replies imaginable, I was so touched by the amount of people that replied and the lovely things they said, it really did make me feel so so much better. I keep going on about how grateful I am on AYME and people are probably getting annoyed by it now haha! But I really am, so much, I can't even express it. It feels so good when so many people are unexpectedly there for you when you're feeling as though it should be the exact opposite. It really does mean the world. Whoever reads this post, if anyone does, whether you're from AYME, know me from elsewhere or even if you're a stranger and don't know me at all, I want you to know that I'm always here for you and you're always welcome to send me a message to talk about whatever you like. I like being there for people and I only hope I can help in some way or another. Everyone needs a friend and it breaks my heart to think that there are people out there with no one and what's more they are probably nice people but in an unfortunate situation. If I knew them I would want to be their friend :) that sounds a bit 'primary school'ish but it's meant in the most normal possible way! ;)<br /><br />4) I'm nervous about moving out of the student house I'm living in at the moment. It means I never have to see the person that's picking on me again (WOOHOO! :D) - BUT, moving my stuff into storage and then a couple of days later in to the new house is going to be physically exhausting. I'm dreading it. My current bedroom is up 4 flights of stairs and my new one is up 3! Not ideal for an ME sufferer haha! I'm genuinely scared because last year my mum had absolutely no sympathy - I know it's my stuff but most parents would sort of make an effort to help their kid a bit more in the knowledge that they physically struggle with exertion. But oh no. My mum just made me carry my stuff (including the heaviest stuff) up the stairs even though I was complaining how much it hurt/ how tired I was and was in tears. When it was finally finished I was in bed for the rest of the day and suffered for days afterwards. I'm really hoping it's not like that again this year :(<br />On top of all that moving stuff, I'm generally quite busy at the moment with a 5000 word research project to do (overdue from the academic year), my dad is coming down this weekend to visit (meh) and I'm really hoping to go to an AYME barbecue on Monday 28th. Worried that I'll be too exhausted from everything, but I'm determined to make it, there are a lot of people I want to meet.<br /><br />Anyway, I'm really tired and after no sleep I'm going to attempt to go back to bed and sleep now. <br /><br />If anyone does read this, whoever you are, I hope you're okay. :)chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com2tag:blogger.com,1999:blog-4951342868631332645.post-50779258465430335662010-06-19T17:16:00.001-07:002010-06-19T18:15:11.329-07:00Lady GagaI just wanted to articulate how I feel about Lady Gaga. <br />I'm not sure why... I suppose because she's such a 'controversial figure' for some and these days I find it more and more satisfying to be totally honest about my opinion on controversial things! <br /><br />A little disclaimer: I'm not actually interested in the world of celebrities. I find it boring, superficial, pathetic, quite a dangerous culture... elaborate with any other negative adjectives you can think of. However, I think it's almost impossible to avoid - you always come across something online, or see the headlines of papers when you're out shopping or, as in my case, when I'm at home my parents buy The Sun (*shudder*) and it's all that is around to read when I'm eating my breakfast so sadly I scan through it! This is just as context because a) I really want to point out that I'm not like most people my age who immerse themselves in that culture. I don't think it's healthy and I think it's sad that people would rather read about the lives of other people instead of live their own b) I'm about to talk about how Gaga is represented in the tabloids and it'd be a bit ironic if I said I hated them but I knew what was in them ;)<br /><br />Anyway, to start, I'm going to throw it out there. I love Gaga, I think she's awesome. So, here are my main reasons:<br /><br />1) I don't normally like pop music much - not out of principle as such, if I like a song I like it, simple as that. I tend to prefer music that has depth, something like Tori Amos - but music isn't just about meaning, it's about entertainment as well which is why I don't rule out pop or rap or other genres that tend to be a bit emotionally empty. Most of it is conformist and superficial and irritating which is why I don't tend to like it. But, Gaga is one of the exceptions :) she is what I would consider 'pop', but I like the music, and I think that instead of going along with everything else in the charts, she is extremely individual and I massively respect that. Many people are afraid of doing something different so just go along with what everyone else is doing. Musicians are afraid of being made fun of in the papers, afraid of doing something different in case they get criticised. I love Gaga so much because she makes a point out of being different. At the same time, I don't think she tries to be different for the sake of it, I think she actually stays true to herself. I think papers find it impossible to criticise her because she makes it so clear that she doesn't care and is not going to let 'criticism for the sake of it' get to her. <br /><br />2) She's been really clever in a sense - from the very start of her career she's been outrageous, so whatever she does next won't be a surprise. That's another reason why it's difficult for the media to criticise her - they can't really report a crazy outfit because we're all used to the fact that that's what she'll wear. She can come out half naked, wearing a telephone fascinator on her head and no one will think twice. It's a very cool position to be in when no one is surprised by what you do, it really can avert that constant 'OMG!'-type attention away from you.<br /><br />3) What makes it even better is that even though we all have to admit she wears some crazy shit, it almost ALWAYS looks good. Anyone who can make lavender and yellow hair and a telephone headpiece look stunningly beautiful is right up there in my books.<br /><br />4) I'm not going to lie, I sometimes find her videos quite uncomfortable to watch. HOWEVER, I can always see the artistic principle behind them and I think as a person, Gaga is incredibly artistic to the point where just looking at her inspires me and makes me smile because it's lovely to see how creative she's been and how much effort she puts in to looking amazing. Again, anyone who can make a dance routine with crutches look cool is very imaginative!<br /><br />5) When I've seen her interviewed, I've always been inspired by how respectable her morals are. She strikes me as a very honest and genuine person who really does care about others. That is a rarity in society today, especially amongst 'celebrities' and the Hollywood A-list.<br /><br />6) She has such passion and energy for what she does. Instead of being in it for the fame or the money, you can tell she loves doing it and loves making others happy through it.<br /><br />7) She is an incredible performer who clearly brings such vitality and energy to the stage and puts on an amazing show for her fans. <br /><br />8) She's ACTUALLY TALENTED! Holy crap, I mean in the day in age where a lot of music is just auto-tuned to make up for the lack of singing talent people have (*cough* Cheryl Cole and Britney Spears *cough*), Gaga can ACTUALLY SING amazingly well. She has a strong, lovely voice. She's a fantastic dancer, singer, and all-round performer... that's what her status is all about. Britney made it to that status when yes, she was/ is a good performer and dancer but the singing wasn't all there. So it's nice to actually see someone rise to 'superstar' status who actually deserves it because all the right talents are there.<br /><br />9) I saw her on Jonathan Ross... I don't think she really 'gets' English humour, haha! But, she said on there that she likes to keep her private self separate from her performing self, if that makes sense. As in, she never goes out dressed down, she'll always enter the public sphere looking immaculate and presents herself as Gaga, always in 'character' if you like, rather than showing her private self. I think that's actually a very good idea because she's able to maintain that sense of dignity and keep certain aspects of her life to herself rather than putting up with the press infiltrating it in every way. She likes to be a performer all the time rather than show herself as a regular human being because it's then constant escapism for the fans, it's more exciting, fans are able to see her as an artist rather than as someone who you can see pictures of taking out the trash or something, which makes it all so unglamorous and seem so fake. <br /><br />I think a couple of years ago, if I heard someone saying that I'd automatically think 'oh my god... how superficial'... but that was when I had convinced myself that music was all about meaning and depth. It's not at all. It's also about performance, escapism, art, entertainment, enjoying yourself, expressing yourself in more ways than one (i.e. not just your 'deep' side, but also your happy side, your fun side, your 'I'm so tempted to dance to this!' side). <br /><br />10) I massively admire her lack of self consciousness. She can go out in an outfit which to us would be ridiculous, the thought of going out like that would never cross our minds. And yet she is so confident in whatever she wears, even if on first glance we think 'ooooooh... are you really wearing that!?'... you always end up thinking 'actually, she rocks that and makes it look damn good!' because her confidence shines through, and the fact that she doesn't give a crap if people don't like it. <br /><br />She encourages all of her fans (and everyone else) to feel good about being themselves and stay true to who they are. That is what we need in a disposable conformist society like we are. It's so refreshing to be given a positive message by someone in such an influential position. I respect her so much for that. <br /><br />On top of all that, HER MUSIC JUST MAKES ME FEEL GOOD. I never used to look for that in music believe it or not but after years of being ashamed of the fact that I like one Girls Aloud song, for example, I've really just realised I don't care, haha. We like what we like and there's nothing to be ashamed of. Especially when it's Gaga! <br /><br />I could elaborate even more on this and put so many extra points in but I thought I'd leave it at 10 so I look less obsessive! I hope that if you're still not a Gaga fan after reading this, it at least gives you reasons to respect her :)<br /><br />So, that is my 10-point summary of why I'm a Gaga fan :D hope you enjoyed!chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com2tag:blogger.com,1999:blog-4951342868631332645.post-82770432615788532202010-06-09T17:54:00.001-07:002010-06-09T18:04:49.345-07:00Poorly day :(So today's been a bit rubbish. I didn't sleep at all last night. Anyway, at about half 9 this morning I was just lying in bed minding my own business when my nose was suddenly really runny for no reason - I looked down and there was blood all over my arm, then it was dripping on to my sheets, and I could feel it dribbling out of my nose and all over my mouth and chin. Gross. I was not amused :P I've had a bloody nose for about two weeks now, constantly. No idea why, it's just like when I blow my nose, the mucus is bloody. TASTY! But today I had a full on nosebleed, the likes of which I haven't had in years. I think it's because the air is so dry at the moment. I Googled causes of nosebleeds (good old Google!) and dry air was one, so I presume it's just that bursting my blood vessels gradually. Brilliant ;)<br /><br />Anyway, I've been particularly weak and tired this week which has been annoying. When I got up today (I went back to sleep after the nosebleed - and after I'd cleaned up I might add!), I tried to get out of bed and almost fell over, I felt so dizzy when I stood up. I tried tidying my room but couldn't stand up so just shuffled along my floor for most of my attempt to tidy up... bet that looked normal, hahaha.<br />I think shortly after that I went back to bed as I couldn't keep my eyes open (so made bugger all progress on my project again... wahhh :().<br /><br />This evening, my boyfriend made a chicken korma for us and another housemate. About an hour later I started having the worst stomach cramps I've had in ages - I mean like, years. They hurt so much I was crying and imagined that contractions must feel similar, heh. I then ended up in a cold sweat and was throwing up for a while. I still feel a bit dodgy but thankfully not as bad as I did, and the stomach cramps aren't too bad now. It was horrible though, and has put me off chicken korma indefinitely +o( <br /><br />So today has been defined by feeling weak, tired and rubbish, a gigantic nosebleed, stomach cramps and throwing up and deciding to never eat chicken korma again! And I did nothing constructive either. Oh dear. Hopefully tomorrow (well, today, considering it's 2am) will be more constructive...chemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0tag:blogger.com,1999:blog-4951342868631332645.post-74246209082312814732010-05-30T05:21:00.001-07:002010-05-30T05:25:36.890-07:00First post :)So, there's nothing much really to say in this. It's just a first post for the sake of a first post. I probably won't ever post on here, I never have anything to say and if I do I always get distracted by something else, or forget to visit a site like this. But I will try, because I want to actually make a blog of my own. I don't really have a record of feelings or things or events and it'd probably be a good idea, so, voila.<br />It probably won't make much sense. Brain fog ftw.<br />Anyway, I would like to mention a beautiful extract from a poem by David Whyte. It's lovely:<br /><br /><span style="font-style: italic;">"Sometimes it takes darkness and the sweet confinement of your aloneness to learn that anything or anyone that does not bring you alive is too small for you.”</span><br /><br />Something to think about. :) xchemilyxhttp://www.blogger.com/profile/00842922014601071054noreply@blogger.com0