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.
Saturday, 26 February 2011
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 :)
Monday, 11 October 2010
Fighting for the ability to do the tiniest things.
So today I'm really feeling... well, ill. I need to write about it as I don't know what else to do with myself.
I'm just starting third year of university - freshers' week has just finished.
Last week I don't remember everything I did, but I know that I went to freshers' fair and signed up to loads of societies (albeit those that involve the least physical exertion) - art, knitting (I'm serious), public speaking, circus, massage, drama, etc.
I knew full well when I was signing up for these things that I wouldn't be able to go to half of them but I was determined to try anyway because that's a lot of what university's about - extra curricular stuff, getting stuck in, meeting new people and since I don't drink and can't really go to clubs etc because of my illness (plus I'm not that kind of person anyway), I really depend on things like societies for my social life and to meet people who share my interests/ outlook on life.
On Saturday, I went to auditions as part of the drama society. The auditions were around 5 hours long and by the end of it I had completely lost my voice and really suffered that evening in terms of headaches, tiredness, aching, feeling sick etc. Nevertheless, the first circus soc meeting was the next day and I really wanted to go - I've always wanted to be able to do fun stuff like juggle, do poi, just all those things that are awesome to be able to say you can do. So, I went to circus soc. When I started doing the first activity (poi) I was shocked at how quickly I needed water - probably within the first 30 seconds I was desperate for a drink. I sucked at poi, I really did, I kept hitting myself with them and wrapping them around myself and all sorts - I really was atrocious. Anyway, since I sucked so much at poi I then moved on to juggling. Again, I was really shocked (and disappointed) at how physically knackering it was - I needed water so so badly after doing the tiniest things and within about 5 minutes I was completely drenched in sweat and shaking from my muscles being so weak and over-worked. Just from juggling. Of course, being a complete novice, I kept dropping the balls so had to keep bending over to pick them up and obviously juggling involves your arms so they were working hard too but really, normal people don't struggle to juggle (rhyme not intended :P). I had got to circus soc at 4, and it finished at 5. I'd only been there for an hour but when it finally finished I felt like I'd been there a lifetime.
I struggled to walk back (just like I'd struggled to walk there). I was shaking, dizzy and staggering... I was aching like crazy too. Home being a student house involves getting up 4 flights of stairs which I seriously struggled with too.
In the evening Jon massaged my legs as they were so sore but it didn't really help (although it was very nice!). Today I woke up in agony everywhere... my muscles were just so so tender and stiff and it felt like I'd pulled every muscle in my body.
Despite this, I had to go into university today to make an appointment to talk about transferring from one module to another, and I had a two-hour seminar. I initially panicked about how I was going to walk into university... it's roughly a 10 minute walk but I could have cried at the thought of it. I coped how I usually cope - I just did it anyway and tried to block out the pain, although when I was sitting in my seminar even then I could feel it every time I moved an inch. I wanted to nip into Sainsbury's on the way home to pick a few bits up, so being the stubborn git I am, I went and did so despite the pain and tiredness and dizziness. I really shouldn't have, but I did.
When I got home I was exhausted. I made myself some food anyway as I hadn't eaten a lot, ate it while faffing around on the computer and then went to lie down. I woke up about an hour ago and everything was spinning like mad and I couldn't walk in a straight line when I tried to get out of bed. I'm feeling sick from the spinning. I'm not going to be able to go downstairs and get myself dinner because I really feel too ill.
I'm also panicking about Wednesday. It's Monday evening now, and luckily I don't have anything to do/ to go into university for tomorrow, so maybe I can rest a bit, but Wednesday is absolutely packed.
At 9am I have a counselling session. At 10am I have a two-hour seminar. Straight after that at 12pm I have an hour long lecture. From 2-4pm I have a life drawing class with the art society. At 4pm I have a physio appt, and from 6pm onwards there is an art social. I physically can't go to all of those things but I hate not going to things, I hate missing out on stuff.
If I was well, everyday would be like Wednesday. I would be in the library studying, attending all my lectures and trying my best to do well with my course to my full ability, and going to society-related things all the time.
But because of M.E/ fibro I'm having to closely monitor what I'm doing and decide whether I can even cope with a day of that, and try and prioritise certain things because I'm not going to be able to do them all. It's so frustrating for a person who is naturally inclined to get involved with everything. I don't like missing out on things. I want to take the opportunities available to me while I'm at university but with my body being the way it is I just can't, and it's so annoying.
I need to go to counselling realistically. I need to go to be able to talk about what I'm talking about here, to go over the frustration and various other things. I need to go to the seminar afterwards because it's the unit I'd like to transfer to (even though I can't put myself down for it until Thursday) - and if I am able to transfer to it I don't want to have missed the first seminar. I need to go to the lecture afterwards since it's compulsory and important to find out what they're going to say. Clearly the art thing is optional but I NEED to meet new people, I really do... this is a prime opportunity to meet people who I get on with. I'll have to leave that early to get to physio, and I can't cancel physio because the appointments are hard to get. The art social is again optional but it's a chance to meet and speak to people who I may actually get on with and it's not like it's clubbing or something that I really would struggle with, it's just a pub thing so it could be really good. I want to go for my own satisfaction. I hate how I am having to consider not doing the things that I want to because I use up my very little energy doing the very basic things. If we think about activities in terms of spoons (for more info on the "spoons" concept go to http://www.butyoudontlooksick.com), let's say I have about 10 spoons of energy a day. Wednesday is the equivalent of about 50-60 spoons for me with all the stuff I would do if I did all of it. Obviously I don't have 50 spoons to work with, I only have 10. On an average day, even a shower uses up about 3 spoons. Walking to and from university often uses up about 3-4. Getting changed, depending on how much pain I am in, can use up about 2. I know this isn't a particularly accurate way of measuring but you get my point. I'm always in spoon-debt, and even the smallest things use up a significant proportion of my daily energy. The bigger spoon-debt I'm in, the more I'll suffer the next day and will start off with even less spoons than normal. You get the idea.
ARGH the frustration and restriction is just getting to me so much right now, when I want to be involved in so many things and feel 'well' and just be normal. I can't explain just how isolating it is and how angry it can make you feel. And compared to a lot of M.E./ fibro sufferers I'm lucky - at least I can just about get to university and do some things - a lot of people can't even do that. It makes you realise just how much you took for granted before. Maybe I'm taking for granted the fact that I can still walk a little bit and I can just about study. But I'm still living a ridiculously-far-from-normal existence and I hate it. I wish more people understood exactly what life is like when you have this illness.
I'm just starting third year of university - freshers' week has just finished.
Last week I don't remember everything I did, but I know that I went to freshers' fair and signed up to loads of societies (albeit those that involve the least physical exertion) - art, knitting (I'm serious), public speaking, circus, massage, drama, etc.
I knew full well when I was signing up for these things that I wouldn't be able to go to half of them but I was determined to try anyway because that's a lot of what university's about - extra curricular stuff, getting stuck in, meeting new people and since I don't drink and can't really go to clubs etc because of my illness (plus I'm not that kind of person anyway), I really depend on things like societies for my social life and to meet people who share my interests/ outlook on life.
On Saturday, I went to auditions as part of the drama society. The auditions were around 5 hours long and by the end of it I had completely lost my voice and really suffered that evening in terms of headaches, tiredness, aching, feeling sick etc. Nevertheless, the first circus soc meeting was the next day and I really wanted to go - I've always wanted to be able to do fun stuff like juggle, do poi, just all those things that are awesome to be able to say you can do. So, I went to circus soc. When I started doing the first activity (poi) I was shocked at how quickly I needed water - probably within the first 30 seconds I was desperate for a drink. I sucked at poi, I really did, I kept hitting myself with them and wrapping them around myself and all sorts - I really was atrocious. Anyway, since I sucked so much at poi I then moved on to juggling. Again, I was really shocked (and disappointed) at how physically knackering it was - I needed water so so badly after doing the tiniest things and within about 5 minutes I was completely drenched in sweat and shaking from my muscles being so weak and over-worked. Just from juggling. Of course, being a complete novice, I kept dropping the balls so had to keep bending over to pick them up and obviously juggling involves your arms so they were working hard too but really, normal people don't struggle to juggle (rhyme not intended :P). I had got to circus soc at 4, and it finished at 5. I'd only been there for an hour but when it finally finished I felt like I'd been there a lifetime.
I struggled to walk back (just like I'd struggled to walk there). I was shaking, dizzy and staggering... I was aching like crazy too. Home being a student house involves getting up 4 flights of stairs which I seriously struggled with too.
In the evening Jon massaged my legs as they were so sore but it didn't really help (although it was very nice!). Today I woke up in agony everywhere... my muscles were just so so tender and stiff and it felt like I'd pulled every muscle in my body.
Despite this, I had to go into university today to make an appointment to talk about transferring from one module to another, and I had a two-hour seminar. I initially panicked about how I was going to walk into university... it's roughly a 10 minute walk but I could have cried at the thought of it. I coped how I usually cope - I just did it anyway and tried to block out the pain, although when I was sitting in my seminar even then I could feel it every time I moved an inch. I wanted to nip into Sainsbury's on the way home to pick a few bits up, so being the stubborn git I am, I went and did so despite the pain and tiredness and dizziness. I really shouldn't have, but I did.
When I got home I was exhausted. I made myself some food anyway as I hadn't eaten a lot, ate it while faffing around on the computer and then went to lie down. I woke up about an hour ago and everything was spinning like mad and I couldn't walk in a straight line when I tried to get out of bed. I'm feeling sick from the spinning. I'm not going to be able to go downstairs and get myself dinner because I really feel too ill.
I'm also panicking about Wednesday. It's Monday evening now, and luckily I don't have anything to do/ to go into university for tomorrow, so maybe I can rest a bit, but Wednesday is absolutely packed.
At 9am I have a counselling session. At 10am I have a two-hour seminar. Straight after that at 12pm I have an hour long lecture. From 2-4pm I have a life drawing class with the art society. At 4pm I have a physio appt, and from 6pm onwards there is an art social. I physically can't go to all of those things but I hate not going to things, I hate missing out on stuff.
If I was well, everyday would be like Wednesday. I would be in the library studying, attending all my lectures and trying my best to do well with my course to my full ability, and going to society-related things all the time.
But because of M.E/ fibro I'm having to closely monitor what I'm doing and decide whether I can even cope with a day of that, and try and prioritise certain things because I'm not going to be able to do them all. It's so frustrating for a person who is naturally inclined to get involved with everything. I don't like missing out on things. I want to take the opportunities available to me while I'm at university but with my body being the way it is I just can't, and it's so annoying.
I need to go to counselling realistically. I need to go to be able to talk about what I'm talking about here, to go over the frustration and various other things. I need to go to the seminar afterwards because it's the unit I'd like to transfer to (even though I can't put myself down for it until Thursday) - and if I am able to transfer to it I don't want to have missed the first seminar. I need to go to the lecture afterwards since it's compulsory and important to find out what they're going to say. Clearly the art thing is optional but I NEED to meet new people, I really do... this is a prime opportunity to meet people who I get on with. I'll have to leave that early to get to physio, and I can't cancel physio because the appointments are hard to get. The art social is again optional but it's a chance to meet and speak to people who I may actually get on with and it's not like it's clubbing or something that I really would struggle with, it's just a pub thing so it could be really good. I want to go for my own satisfaction. I hate how I am having to consider not doing the things that I want to because I use up my very little energy doing the very basic things. If we think about activities in terms of spoons (for more info on the "spoons" concept go to http://www.butyoudontlooksick.com), let's say I have about 10 spoons of energy a day. Wednesday is the equivalent of about 50-60 spoons for me with all the stuff I would do if I did all of it. Obviously I don't have 50 spoons to work with, I only have 10. On an average day, even a shower uses up about 3 spoons. Walking to and from university often uses up about 3-4. Getting changed, depending on how much pain I am in, can use up about 2. I know this isn't a particularly accurate way of measuring but you get my point. I'm always in spoon-debt, and even the smallest things use up a significant proportion of my daily energy. The bigger spoon-debt I'm in, the more I'll suffer the next day and will start off with even less spoons than normal. You get the idea.
ARGH the frustration and restriction is just getting to me so much right now, when I want to be involved in so many things and feel 'well' and just be normal. I can't explain just how isolating it is and how angry it can make you feel. And compared to a lot of M.E./ fibro sufferers I'm lucky - at least I can just about get to university and do some things - a lot of people can't even do that. It makes you realise just how much you took for granted before. Maybe I'm taking for granted the fact that I can still walk a little bit and I can just about study. But I'm still living a ridiculously-far-from-normal existence and I hate it. I wish more people understood exactly what life is like when you have this illness.
Monday, 4 October 2010
Physio appointment numero uno
Okay, so I had my first physio appointment today. I feel the need to start off by saying that for once, I had a positive experience with the NHS! YAY!!
The physio was absolutely lovely. Sods law, she's on maternity leave as of the end of this week so my next appointment will be with someone different, but I've been assured by today's physio and by the receptionist (whose back he mended :P) that he's just as good.
Today's physio was young and very friendly and smiley. I'm so gutted I don't get to have her again! She was dressed like my P.E. teachers used to though... I guess that's what you would expect... but it un-nerved me a little. I hated P.E. teachers.
So, first of all the appointment consisted of having a chat and going over my symptoms. I'd been referred on the basis of having hypermobility which the physio confirmed, although I felt the need to point out I'm not really sure if fibromyalgia or ME are on those notes but they're problems as well - she said that the fibro was written on the rheumatologist's referral sheets but that ME wasn't... I presume the rheum saw them as the same thing. Hmmm. Anyway, so we had a chat about my symptoms and then she went through a checklist asking things like "do you have problems with X and Y?" and when I said yes, which was after explaining in detail my other symptoms, her reaction was "ohhh :( you poor thing!" which was very sweet... she was just as amused as me at how many things are going wrong with my body haha.
Oh, also she was shading in a diagram of the front of the body and one of the back in the areas I said I had problems with... I was silently amused by the fact that in the end, both diagrams were basically entirely coloured in hah :D
She asked me to rate my pain at its best and at its worst (0 being no pain and 10 being intense pain). I think the problem with that is that it's all relative and it's hard to compare pain at one time to another because you don't have much perspective. I said that I'd estimate that at best, it's a 2 and at its worst a 6/7 - I'm lucky that there isn't really any intense pain, it's more of a dull ache which is annoying because it's uncomfortable/ unpleasant, but not because it's intense or causing me distress.
Anyway, after that she tested whether my nerves were working by getting me to push certain parts of my body against her hands (hah that sounds inappropriate!) i.e. my head, my feet, that kind of thing. It was really funny though, purely because my muscles were so, so shuddery and trembly... she was shocked at how tired they were. After doing all of that she concluded that while the power is behind the muscles (i.e. the nerves from my brain to my muscles are working correctly), they're just unbelievably tired and need a lot of strengthening (showed by the violent shaking).
She got me to to squats (she ended up having to hold on to me as I kept almost falling over), and lie on the bed (if you can call it that) and do certain things like bend my knees and move one to the side while keeping one still. That failed miserably :P both were shaking like mad and I found it really difficult to control the trembling and the movement of my legs, at which she commented "ohh you're even struggling to do this!" in a "oh gosh, I didn't realise you would be this weak when I first saw you" kind of way. It wasn't in a horrible way, I think she was just surprised/ felt sorry for my complete and utter lack of strength hahah. She established that during the knee thing, even my core muscles were shaking (i.e. stomach muscles behind the abs) and said that it's worth starting at those muscles and doing basic strengthening exercises to hopefully give those muscles a bit of control and stability thus helping my limbs in the same way. I don't know how long it'll take to notice a difference with that though - the problem is also remembering to do the exercises, I'm so scatty that knowing me it'll just completely slip my mind. I might have to write a big note to myself on the wall saying "REMEMBER PHYSIO EXERCISES" which might look a bit strange (and pathetic) to any visitors but oh well!
Also, I had a doctor's appt after the physio. Convenient to get them out of the way on the same day, actually. I spoke to my doctor about my problems sleeping at night and after a lengthy chat about the possible side effects of the amitryptiline, I agreed to try it. I think the side effects she was worried about were the possibility of thermo-disregulation (I think that's what it was) as it can make you quite unwell apparently, and other than that there was just the possibility of being anxious/ jittery/ on edge. I don't like feeling like that so I hope that doesn't happen. Anyway, it's generally risky because I'm already on an anti-depressant, so adding another one in (amitryptiline is a mild anti-depressant which has sedative effects) can cause problems. I think the other risk was serotonin syndrome which I also hope I don't get :| but yes, overall my doctors appointment was also good. My doctor is always lovely, but I don't always come out with amazing outcomes purely because a lot of the time there isn't much she can do about most of the symptoms. Anyway, it's nice to be finally trying something for the sleep because it's such a pain in the arse. I hope the amitryptiline helps!
That's all for now, I really can't think of anything interesting to say.
Will hopefully post again soon :)
The physio was absolutely lovely. Sods law, she's on maternity leave as of the end of this week so my next appointment will be with someone different, but I've been assured by today's physio and by the receptionist (whose back he mended :P) that he's just as good.
Today's physio was young and very friendly and smiley. I'm so gutted I don't get to have her again! She was dressed like my P.E. teachers used to though... I guess that's what you would expect... but it un-nerved me a little. I hated P.E. teachers.
So, first of all the appointment consisted of having a chat and going over my symptoms. I'd been referred on the basis of having hypermobility which the physio confirmed, although I felt the need to point out I'm not really sure if fibromyalgia or ME are on those notes but they're problems as well - she said that the fibro was written on the rheumatologist's referral sheets but that ME wasn't... I presume the rheum saw them as the same thing. Hmmm. Anyway, so we had a chat about my symptoms and then she went through a checklist asking things like "do you have problems with X and Y?" and when I said yes, which was after explaining in detail my other symptoms, her reaction was "ohhh :( you poor thing!" which was very sweet... she was just as amused as me at how many things are going wrong with my body haha.
Oh, also she was shading in a diagram of the front of the body and one of the back in the areas I said I had problems with... I was silently amused by the fact that in the end, both diagrams were basically entirely coloured in hah :D
She asked me to rate my pain at its best and at its worst (0 being no pain and 10 being intense pain). I think the problem with that is that it's all relative and it's hard to compare pain at one time to another because you don't have much perspective. I said that I'd estimate that at best, it's a 2 and at its worst a 6/7 - I'm lucky that there isn't really any intense pain, it's more of a dull ache which is annoying because it's uncomfortable/ unpleasant, but not because it's intense or causing me distress.
Anyway, after that she tested whether my nerves were working by getting me to push certain parts of my body against her hands (hah that sounds inappropriate!) i.e. my head, my feet, that kind of thing. It was really funny though, purely because my muscles were so, so shuddery and trembly... she was shocked at how tired they were. After doing all of that she concluded that while the power is behind the muscles (i.e. the nerves from my brain to my muscles are working correctly), they're just unbelievably tired and need a lot of strengthening (showed by the violent shaking).
She got me to to squats (she ended up having to hold on to me as I kept almost falling over), and lie on the bed (if you can call it that) and do certain things like bend my knees and move one to the side while keeping one still. That failed miserably :P both were shaking like mad and I found it really difficult to control the trembling and the movement of my legs, at which she commented "ohh you're even struggling to do this!" in a "oh gosh, I didn't realise you would be this weak when I first saw you" kind of way. It wasn't in a horrible way, I think she was just surprised/ felt sorry for my complete and utter lack of strength hahah. She established that during the knee thing, even my core muscles were shaking (i.e. stomach muscles behind the abs) and said that it's worth starting at those muscles and doing basic strengthening exercises to hopefully give those muscles a bit of control and stability thus helping my limbs in the same way. I don't know how long it'll take to notice a difference with that though - the problem is also remembering to do the exercises, I'm so scatty that knowing me it'll just completely slip my mind. I might have to write a big note to myself on the wall saying "REMEMBER PHYSIO EXERCISES" which might look a bit strange (and pathetic) to any visitors but oh well!
Also, I had a doctor's appt after the physio. Convenient to get them out of the way on the same day, actually. I spoke to my doctor about my problems sleeping at night and after a lengthy chat about the possible side effects of the amitryptiline, I agreed to try it. I think the side effects she was worried about were the possibility of thermo-disregulation (I think that's what it was) as it can make you quite unwell apparently, and other than that there was just the possibility of being anxious/ jittery/ on edge. I don't like feeling like that so I hope that doesn't happen. Anyway, it's generally risky because I'm already on an anti-depressant, so adding another one in (amitryptiline is a mild anti-depressant which has sedative effects) can cause problems. I think the other risk was serotonin syndrome which I also hope I don't get :| but yes, overall my doctors appointment was also good. My doctor is always lovely, but I don't always come out with amazing outcomes purely because a lot of the time there isn't much she can do about most of the symptoms. Anyway, it's nice to be finally trying something for the sleep because it's such a pain in the arse. I hope the amitryptiline helps!
That's all for now, I really can't think of anything interesting to say.
Will hopefully post again soon :)
Sunday, 5 September 2010
New diagnosis...
Hi everyone :)
Just thought I'd post an update as I do believe it's been about a month since I last wrote anything.
I've just got back from Sainsbury's and I'm supposed to be doing revision (I have an exam on Soviet Russia from start to finish tomorrow!) but I'm feeling a bit weird from Sainsbury's. I get this it a lot, it's hard to describe... it's almost as though things are shifting in front of me even though I'm staying still; like I've shifted a foot to the left but I haven't moved. It's like a fragmented dizziness, at the same time as getting hot and cold shivers and, if I've done something like shopping which involves more energy/ strength than I have, I'll be sweating, shaking and having palpitations. Not to mention aching if I'm carrying bags. Anyway, long story short, I thought while I try and get myself together to start on some more revision, I'd write this post ;-)
Not a lot has happened in the last month but at the same time I've been insanely busy wth uni work - continual revision, constantly trying to chip away at my project and so forth. A week or so ago I was so stressed and had made myself so ill from working that I was vomiting... lovely. But I'm feeling a lot better now, particularly as I've only got one exam left (i.e. tomorrow) and have very nearly finished my project which will be handed in in a few days. Thank god. My exam on Wednesday (I only had two exams) was awful; I can't write on demand, especially in a pressured situation like exams as my mind goes blank. I also can't sit in an enclosed space concentrating for 2 and a half solid hours. I'm entitled to rest breaks here and there but they make no real difference. On Wednesday I gave up half an hour early as I couldn't cope anymore. I couldn't think of anything more to write, but I think if I was feeling okay I could have done. It's just that exams are literally the worst invention for people with this illness, heh... literally everything is against you. Ideally I could have a very long nap in the middle of it, or naps every half an hour. That's the only way I could actually cope with them/ perform to the standard I know I could if I wasn't faced with conditions that don't suit my body. But as it is at the moment I'm sitting there for 2.5 solid hours, trying to stay awake, trying not to feel too sick to concentrate, trying to numb the discomfort in my body, trying to work around the massive issues with word-finding I have, especially on demand (literally the other day I was getting stuck on every other word), trying to work despite the headaches getting more intense, trying to focus despite the mental exertion it requires to think so deeply taking more out of me than I have. I'm sure you get the picture. I suffered so much after the exam. I pushed myself to nip to the shop to get some food for that night but I was feeling horrendous and even worse when I got home... I was in so much discomfort I didn't want to be in my body any more. I just wanted to be free of it. There was nothing I could do for myself and Jon isn't here to help me with anything, so I was just lying in bed pretty much whimpering from the discomfort and boredom and frustration. Sounds pathetic I know, but I suppose it was really.
Anyway, on Friday I had an appointment with a rheumatologist. I got that appointment because I'd mentioned to my GP recently that I have hypermobile joints (I can do all sorts of bendy shit with them that you're not meant to be able to do :P) and am getting pain with it too. She said she suspected I had hypermobility syndrome, so referred me for a rheum. examination.
In short, the rheumatologist confirmed my hypermobility syndrome (although trivialized the discomfort it can cause, going on about how it is 'benign' - I know that but it still causes pain, grr!), and she also diagnosed me with Fibromyalgia.
I know a lot of people with M.E. also have Fibro, but I thought it was just intense muscle/ joint pain - and I do have those, but I wouldn't say they were constantly intense or anything. Anyway, I looked up the symptoms when I got home and realised that actually, those symptoms probably fit with me even more than the M.E. ones do. That said, they are very similar so it could be that I have one or the other or both.
The symptoms that really struck me were:
IBS, headaches, 'fibro fog', poor quality sleep, fatigue, stiffness, extreme sensitivity, tinnitus, paresthesia, restless leg syndrome, thermoregulation problems, jaw pain, cold symptoms (for me, these come on particularly if I've had a bad night's sleep), muscle twitches and weakness, dizziness, nausea, widespread pain, vision problems, trouble breathing etc.
I know a lot of those overlap with the M.E. ones but meh.
I didn't really like the rheumatologist I saw. She smiled occasionally but wasn't overly friendly or comforting, especially considering I was struggling to articulate things because of the brain fog, and she kept giving me puzzled looks as though what I'd said didn't make sense (which wouldn't surprise me, but she kept pushing me to answer in more detail/ in a way that she could understand but I couldn't!). It was also quite an embarrassing experience in general... I'll elaborate, which I'm sure some of you might find amusing ;) so embarrassment factors:
1) I knew I would have to provide a urine sample when I got there, so I specifically banned myself from going to the loo before I left the house so that I would be able to go when I was there. Anyway, when I got there and was asked to provide a sample, the nurse directed me to the toilet and waited outside for me. Five minutes of trying later and I had to come out and admit defeat, saying "I'm really sorry... I can't wee on demand." - lol! I was telling one of my housemates about it later that day and he was like "that's what we call stage fright" - ahaha. It's very true!
2) I dressed specifically in a short skirt and clear tights so that I wouldn't have to take any clothing off for the dr to be able to feel my joints. Little did I know that she would want to perform a full body examination and I would be made to strip down to my underwear anyway. I was not amused :P worse, she made me dress in this gown thing that didn't do up at the back - as in, everything at the back of me was exposed... my back, my bra, my knickers etc. The worst thing was when she was was feeling my spine, she firstly commented on my tattoo saying in a really un-enthralled tone 'oh that's interesting' and then she was feeling my spine, but I could feel that my knickers had ridden up slightly and were exposing far more of my bum than I was comfortable showing. That was awkward. :P Oh, even worse, she made me bend over to put my hands flat on the floor while keeping my knees straight. I don't want to imagine the view she got from behind :')
3) When she was examining me when I was lying down, my legs and arms kept twitching and on numerous occasions I almost smacked her in the head.
4) She was trying to bend my knees but when I bend them, they tremble violently (which means going up the stairs is fun, lol). So there she was holding my leg, bending my knee and my knee actually shook so much it went through her as well, ahahaha.
5) She asked if I had had any hair loss. I said no. She then said "yes, you do look like you have a good head of hair" and I - totally out of it after only 3 hours sleep the night before - went, "yes... it's... I'm... thick *points at head*" ahahahaha. So in trying to agree that yes, I have thick hair/ my hair is thick, I ended up just calling myself thick. Brilliant.
I generally got the feeling she thought I was really, really dumb from that appointment hah.
Anyway, the outcome: I got the hypermobility syndrome confirmed, I got diagnosed with Fibro, and I got referred for physiotherapy which I'm happy about as I could really do with it.
I'm not sure how I feel about the Fibro diagnosis. In a way I'm satisfied, in that I feel that it might be taken more seriously than the M.E. - it just seems slightly more accepted by the medical profession and therefore most other people as well. Similarly, it's nice to have another name to describe my symptoms.
At the same time though, I'm obviously disappointed that it's yet another thing to add to the list of problems, and as with the M.E. there's constantly that niggling worry like, "is this what's *really* wrong with me or is it yet another label for something they don't understand/ a dustbin diagnosis?" It's so hard to know.
But I should probably stop pondering and get on with some revision now! I really don't feel like it and I'm really cold/ shivery/ tired/ bleh, but I think I owe it to myself to try and do well tomorrow.
Will hopefully post again soon :)
Much love x
Just thought I'd post an update as I do believe it's been about a month since I last wrote anything.
I've just got back from Sainsbury's and I'm supposed to be doing revision (I have an exam on Soviet Russia from start to finish tomorrow!) but I'm feeling a bit weird from Sainsbury's. I get this it a lot, it's hard to describe... it's almost as though things are shifting in front of me even though I'm staying still; like I've shifted a foot to the left but I haven't moved. It's like a fragmented dizziness, at the same time as getting hot and cold shivers and, if I've done something like shopping which involves more energy/ strength than I have, I'll be sweating, shaking and having palpitations. Not to mention aching if I'm carrying bags. Anyway, long story short, I thought while I try and get myself together to start on some more revision, I'd write this post ;-)
Not a lot has happened in the last month but at the same time I've been insanely busy wth uni work - continual revision, constantly trying to chip away at my project and so forth. A week or so ago I was so stressed and had made myself so ill from working that I was vomiting... lovely. But I'm feeling a lot better now, particularly as I've only got one exam left (i.e. tomorrow) and have very nearly finished my project which will be handed in in a few days. Thank god. My exam on Wednesday (I only had two exams) was awful; I can't write on demand, especially in a pressured situation like exams as my mind goes blank. I also can't sit in an enclosed space concentrating for 2 and a half solid hours. I'm entitled to rest breaks here and there but they make no real difference. On Wednesday I gave up half an hour early as I couldn't cope anymore. I couldn't think of anything more to write, but I think if I was feeling okay I could have done. It's just that exams are literally the worst invention for people with this illness, heh... literally everything is against you. Ideally I could have a very long nap in the middle of it, or naps every half an hour. That's the only way I could actually cope with them/ perform to the standard I know I could if I wasn't faced with conditions that don't suit my body. But as it is at the moment I'm sitting there for 2.5 solid hours, trying to stay awake, trying not to feel too sick to concentrate, trying to numb the discomfort in my body, trying to work around the massive issues with word-finding I have, especially on demand (literally the other day I was getting stuck on every other word), trying to work despite the headaches getting more intense, trying to focus despite the mental exertion it requires to think so deeply taking more out of me than I have. I'm sure you get the picture. I suffered so much after the exam. I pushed myself to nip to the shop to get some food for that night but I was feeling horrendous and even worse when I got home... I was in so much discomfort I didn't want to be in my body any more. I just wanted to be free of it. There was nothing I could do for myself and Jon isn't here to help me with anything, so I was just lying in bed pretty much whimpering from the discomfort and boredom and frustration. Sounds pathetic I know, but I suppose it was really.
Anyway, on Friday I had an appointment with a rheumatologist. I got that appointment because I'd mentioned to my GP recently that I have hypermobile joints (I can do all sorts of bendy shit with them that you're not meant to be able to do :P) and am getting pain with it too. She said she suspected I had hypermobility syndrome, so referred me for a rheum. examination.
In short, the rheumatologist confirmed my hypermobility syndrome (although trivialized the discomfort it can cause, going on about how it is 'benign' - I know that but it still causes pain, grr!), and she also diagnosed me with Fibromyalgia.
I know a lot of people with M.E. also have Fibro, but I thought it was just intense muscle/ joint pain - and I do have those, but I wouldn't say they were constantly intense or anything. Anyway, I looked up the symptoms when I got home and realised that actually, those symptoms probably fit with me even more than the M.E. ones do. That said, they are very similar so it could be that I have one or the other or both.
The symptoms that really struck me were:
IBS, headaches, 'fibro fog', poor quality sleep, fatigue, stiffness, extreme sensitivity, tinnitus, paresthesia, restless leg syndrome, thermoregulation problems, jaw pain, cold symptoms (for me, these come on particularly if I've had a bad night's sleep), muscle twitches and weakness, dizziness, nausea, widespread pain, vision problems, trouble breathing etc.
I know a lot of those overlap with the M.E. ones but meh.
I didn't really like the rheumatologist I saw. She smiled occasionally but wasn't overly friendly or comforting, especially considering I was struggling to articulate things because of the brain fog, and she kept giving me puzzled looks as though what I'd said didn't make sense (which wouldn't surprise me, but she kept pushing me to answer in more detail/ in a way that she could understand but I couldn't!). It was also quite an embarrassing experience in general... I'll elaborate, which I'm sure some of you might find amusing ;) so embarrassment factors:
1) I knew I would have to provide a urine sample when I got there, so I specifically banned myself from going to the loo before I left the house so that I would be able to go when I was there. Anyway, when I got there and was asked to provide a sample, the nurse directed me to the toilet and waited outside for me. Five minutes of trying later and I had to come out and admit defeat, saying "I'm really sorry... I can't wee on demand." - lol! I was telling one of my housemates about it later that day and he was like "that's what we call stage fright" - ahaha. It's very true!
2) I dressed specifically in a short skirt and clear tights so that I wouldn't have to take any clothing off for the dr to be able to feel my joints. Little did I know that she would want to perform a full body examination and I would be made to strip down to my underwear anyway. I was not amused :P worse, she made me dress in this gown thing that didn't do up at the back - as in, everything at the back of me was exposed... my back, my bra, my knickers etc. The worst thing was when she was was feeling my spine, she firstly commented on my tattoo saying in a really un-enthralled tone 'oh that's interesting' and then she was feeling my spine, but I could feel that my knickers had ridden up slightly and were exposing far more of my bum than I was comfortable showing. That was awkward. :P Oh, even worse, she made me bend over to put my hands flat on the floor while keeping my knees straight. I don't want to imagine the view she got from behind :')
3) When she was examining me when I was lying down, my legs and arms kept twitching and on numerous occasions I almost smacked her in the head.
4) She was trying to bend my knees but when I bend them, they tremble violently (which means going up the stairs is fun, lol). So there she was holding my leg, bending my knee and my knee actually shook so much it went through her as well, ahahaha.
5) She asked if I had had any hair loss. I said no. She then said "yes, you do look like you have a good head of hair" and I - totally out of it after only 3 hours sleep the night before - went, "yes... it's... I'm... thick *points at head*" ahahahaha. So in trying to agree that yes, I have thick hair/ my hair is thick, I ended up just calling myself thick. Brilliant.
I generally got the feeling she thought I was really, really dumb from that appointment hah.
Anyway, the outcome: I got the hypermobility syndrome confirmed, I got diagnosed with Fibro, and I got referred for physiotherapy which I'm happy about as I could really do with it.
I'm not sure how I feel about the Fibro diagnosis. In a way I'm satisfied, in that I feel that it might be taken more seriously than the M.E. - it just seems slightly more accepted by the medical profession and therefore most other people as well. Similarly, it's nice to have another name to describe my symptoms.
At the same time though, I'm obviously disappointed that it's yet another thing to add to the list of problems, and as with the M.E. there's constantly that niggling worry like, "is this what's *really* wrong with me or is it yet another label for something they don't understand/ a dustbin diagnosis?" It's so hard to know.
But I should probably stop pondering and get on with some revision now! I really don't feel like it and I'm really cold/ shivery/ tired/ bleh, but I think I owe it to myself to try and do well tomorrow.
Will hopefully post again soon :)
Much love x
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