Hi everyone!
So I'm just writing this in response to the uproar about the DLA reforms.
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.
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.
I'm going to paste the article here so you can have a read... I think it shows quite a few things:
1) How badly newspaper articles were written in 1850!
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!)
3) The complete lack of understanding and mistreatment of those people
4) That learning disabilities were often confused with madness and general insanity
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.
So, here it is:
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'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.
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.
Tuesday 17 January 2012
Wednesday 28 December 2011
New Year
Gah, 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 ;-)
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!).
So, basically, my opinion on the new year and general hype which surrounds it is this:
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.
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".
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.
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.
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.
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.
If change is worth it then it's worth it straight away, or as soon as is feasibly possible.
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.
Anyway, just wanted to clear that up in case there was the possibility of that being misconstrued as hypocrisy regarding waiting to change something!
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.
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!
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! :)
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.
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.
Anyway, I really am finished now ;) hope everyone is well. x
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!).
So, basically, my opinion on the new year and general hype which surrounds it is this:
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.
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".
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.
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.
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.
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.
If change is worth it then it's worth it straight away, or as soon as is feasibly possible.
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.
Anyway, just wanted to clear that up in case there was the possibility of that being misconstrued as hypocrisy regarding waiting to change something!
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.
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!
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! :)
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.
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.
Anyway, I really am finished now ;) hope everyone is well. x
Saturday 17 December 2011
Personal Responsibility
Hi guys :)
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.
I've just read the following article:
http://www.bbc.co.uk/news/uk-england-south-yorkshire-16225748
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.
FOR GOODNESS' SAKE.
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.
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.
BUT...
There are a few issues here that I'd like to address that are nationwide problems.
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.
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.
We need to exercise some self-control for a change, and take personal responsibility for our actions/ choices.
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.
People are generally just happy to be ignorant about everything.
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".
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". Not so much when you get hit by a bus.
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".
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.
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.
I've just read the following article:
http://www.bbc.co.uk/news/uk-england-south-yorkshire-16225748
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.
FOR GOODNESS' SAKE.
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.
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.
BUT...
There are a few issues here that I'd like to address that are nationwide problems.
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.
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.
We need to exercise some self-control for a change, and take personal responsibility for our actions/ choices.
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.
People are generally just happy to be ignorant about everything.
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".
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". Not so much when you get hit by a bus.
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".
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.
Monday 12 December 2011
OH HEY GUYZZZZ
Hey sweetpeas!
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!
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.
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.
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 :)
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.
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 ;)
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.
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.
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!
Anyway, this has been a much longer post than intended :P I'll stop rambling now.
I hope everyone is well and happy; please comment/ chat to me, I ronery and onry have internet fwends.
xxxx
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!
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.
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.
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 :)
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.
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 ;)
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.
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.
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!
Anyway, this has been a much longer post than intended :P I'll stop rambling now.
I hope everyone is well and happy; please comment/ chat to me, I ronery and onry have internet fwends.
xxxx
Thursday 21 April 2011
A bit of everything
Wow, I really haven't mastered the art of regular blogging have I!?
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.
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!
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:
1) Nails:
a) Sally Hansen Maximum Growth Cuticle and Nail Treatment Pen:
b) Sally Hansen Maximum Growth Daily Nail Treatment:
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!
2) Skin:
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:
I love it, it's the perfect consistency and most importantly NOT GREASY! Hooray!
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):
It's a bit heavier but the SPF is a massive bonus and it smells incredible!
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.
3) Lips:
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
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.
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!
Especially:
http://youtu.be/xViGGXz8Gio
http://youtu.be/mnt1fy78cDs - lovelovelove in particular!
http://youtu.be/R0rEuLdwQNw
http://youtu.be/9QHwDV-GfqQ
I've not really heard any "dubstep" I like until Noisia... seriously wow, they are slightly addictive!
e.g. I discovered this when browsing youtube:
http://youtu.be/BCQZW_iFUp4
*dance*
I like discovering new music!
And don't get me started on my girl crush on Katy Perry.
Excuse me while I wipe up my drool.
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!):
The black bits under my nail = coagulated blood. Attractive.
And yes thanks, someone has already pointed out if you turn your head it looks a bit like a penis.
Only I could manage to get injuries like that.
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.
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!
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:
1) Nails:
a) Sally Hansen Maximum Growth Cuticle and Nail Treatment Pen:
b) Sally Hansen Maximum Growth Daily Nail Treatment:
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!
2) Skin:
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:
I love it, it's the perfect consistency and most importantly NOT GREASY! Hooray!
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):
It's a bit heavier but the SPF is a massive bonus and it smells incredible!
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.
3) Lips:
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
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.
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!
Especially:
http://youtu.be/xViGGXz8Gio
http://youtu.be/mnt1fy78cDs - lovelovelove in particular!
http://youtu.be/R0rEuLdwQNw
http://youtu.be/9QHwDV-GfqQ
I've not really heard any "dubstep" I like until Noisia... seriously wow, they are slightly addictive!
e.g. I discovered this when browsing youtube:
http://youtu.be/BCQZW_iFUp4
*dance*
I like discovering new music!
And don't get me started on my girl crush on Katy Perry.
Excuse me while I wipe up my drool.
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!):
The black bits under my nail = coagulated blood. Attractive.
And yes thanks, someone has already pointed out if you turn your head it looks a bit like a penis.
Only I could manage to get injuries like that.
Saturday 26 February 2011
POTS 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).
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.
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 :)
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?!
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.
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.
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 :)
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?!
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.
Saturday 29 January 2011
Pain of Salvation - Road Salt
This 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.
This time I've tried not to get hurt
This time I'll stay untouched by pain and dirt
This time I'll stick to what I've learned
This time I'll fly so low I won't get burned
Maybe it's not enough
Maybe this time it's just too much
Maybe I'm not that tough
Maybe this time the road is just too rough
To walk down
So I sit down
I've walked this road so many years
I've worn out all my boots
I've cried all tears
So many cross roads left behind
So many choices burned in to my mind
Maybe it's not enough
Maybe this time it's just too much
Maybe I'm not that tough
Maybe this time the road is just too rough
To take me home
But I walk on
This time I've tried not to get hurt
This time I'll stay untouched by pain and dirt
This time I'll stick to what I've learned
This time I'll fly so low I won't get burned
Maybe it's not enough
Maybe this time it's just too much
Maybe I'm not that tough
Maybe this time the road is just too rough
To walk down
So I sit down
I've walked this road so many years
I've worn out all my boots
I've cried all tears
So many cross roads left behind
So many choices burned in to my mind
Maybe it's not enough
Maybe this time it's just too much
Maybe I'm not that tough
Maybe this time the road is just too rough
To take me home
But I walk on
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