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.
Saturday, 17 December 2011
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
Tuesday, 23 November 2010
Heart, 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!
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.
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.
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.
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 :)
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 :)
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.
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
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.
Will write soon... doubtless more irrelevant, inconsequential shit, but never mind.
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.
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.
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.
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 :)
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 :)
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.
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
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.
Will write soon... doubtless more irrelevant, inconsequential shit, but never mind.
Wednesday, 3 November 2010
Just 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.
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...
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.
Carpe Diem, etc.
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.
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!)
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.
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.
Just a thought that I like to keep in the back of my mind :)
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...
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.
Carpe Diem, etc.
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.
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!)
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.
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.
Just a thought that I like to keep in the back of my mind :)
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