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.
Monday, 11 October 2010
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
Tuesday, 3 August 2010
04/08
This isn't going to be about anything particular. Just for my own reflection really.
So, today I've felt sick all day and have had to force myself to eat or I feel worse from the hypoglycaemic-type-symptoms I get when I don't eat enough. I hate having to force myself to eat, it doesn't feel good at all and I never have any idea what to have; I have a very stressful relationship with food. I just find it such an inconvenience and in a way, a bit of a paradox - I don't have enough energy or mental clarity to decide what to have or to make it, and because haven't eaten, I still don't have any energy to do anything. Food upsets me everyday and I dread meal times, mainly for the energy I use purely thinking of what I can have. I'm also constantly worrying that not only am I not really eating, but I'm not eating the 'right' stuff, which makes me feel guilty and puts me off eating even more.
I've been quite dizzy over the past few days. Today my muscles and joints are aching a lot too. I've been stuck in bed for most of the day feeling too nauseous, sore, dizzy and achey to do anything but I'm used to it really. I wish I wasn't.
I still have a lot of uni work to do which is dragging me down. I have my 5000 word project which is running into endless problems because of the nature of it. I really need my tutor to reply to my email asking for help but she hasn't thus far, and it has to be in on September 10th. Eek :( I also have to revise for two exams which will be sometime in the first two weeks of September (I'm not sure when yet). One of the modules is 'Rethinking History', which is all about metaphysical concepts relating to writing and understanding history but it's far too complicated for my brain to work through, and so tiring trying to absorb it. My brain seems to be able to deal with things I know about already, but learning new information is really tough these days. I sound like an OAP! The other exam is about communism in Russia from start to finish. I loved that module, and I still do, I just don't quite know how to cover it all in less than a month. I'm also not sure how to do well in exams which isn't helping matters, especially since my department refuses to give feedback. Grrr. So I have no idea where I've been going wrong in exams (apart from having a 'slow' brain and feeling like crap all the time!)... I don't know what is wrong with my technique, I wish someone would tell me.
Speaking of my department, there's this adorable Professor. Adorable because... well... let me show you what he looks like:
He specialises in the Tudor period, and he looks like he's walked straight out of it, too :D anyway, my point is, he keeps popping up in random documentaries! One of his other specialities is witchcraft/ paganism. The things I can think of that I've seen him in include a documentary about the Great Fire of London, a Sunday magazine for women in an article about modern-day pagan women, a documentary about women accused of being Maxine Carr and how these accusations resemble witch-hunts, and tonight he appeared in a documentary about 'wild swimming' in which he introduced the presenter to a statue-thing... no, seriously, it was "Alice, this is [insert statue's name here]; [statue] this is Alice." - it was so funny! I was telling my boyfriend's mum about how Ronald pops up in all these programmes and that very night, I was watching the Great Fire of London documentary with her and there he was. The next day she saw him walking by the uni library. Lol! Bless him. I would love to study one of the things he specialises in but there aren't any options that he teaches next year which is a shame, and I'm also not particularly strong when it comes to Early Modern history and I'm not sure what I could do relating to witch-craft.
Anyway, I'm now rambling (as if I wasn't before...). I need to sleep. But I kind of don't see the point because if tonight is like most other nights it'll be broken, unrefreshing and frustrating. Meh. Will hopefully write about something more interesting soon.
So, today I've felt sick all day and have had to force myself to eat or I feel worse from the hypoglycaemic-type-symptoms I get when I don't eat enough. I hate having to force myself to eat, it doesn't feel good at all and I never have any idea what to have; I have a very stressful relationship with food. I just find it such an inconvenience and in a way, a bit of a paradox - I don't have enough energy or mental clarity to decide what to have or to make it, and because haven't eaten, I still don't have any energy to do anything. Food upsets me everyday and I dread meal times, mainly for the energy I use purely thinking of what I can have. I'm also constantly worrying that not only am I not really eating, but I'm not eating the 'right' stuff, which makes me feel guilty and puts me off eating even more.
I've been quite dizzy over the past few days. Today my muscles and joints are aching a lot too. I've been stuck in bed for most of the day feeling too nauseous, sore, dizzy and achey to do anything but I'm used to it really. I wish I wasn't.
I still have a lot of uni work to do which is dragging me down. I have my 5000 word project which is running into endless problems because of the nature of it. I really need my tutor to reply to my email asking for help but she hasn't thus far, and it has to be in on September 10th. Eek :( I also have to revise for two exams which will be sometime in the first two weeks of September (I'm not sure when yet). One of the modules is 'Rethinking History', which is all about metaphysical concepts relating to writing and understanding history but it's far too complicated for my brain to work through, and so tiring trying to absorb it. My brain seems to be able to deal with things I know about already, but learning new information is really tough these days. I sound like an OAP! The other exam is about communism in Russia from start to finish. I loved that module, and I still do, I just don't quite know how to cover it all in less than a month. I'm also not sure how to do well in exams which isn't helping matters, especially since my department refuses to give feedback. Grrr. So I have no idea where I've been going wrong in exams (apart from having a 'slow' brain and feeling like crap all the time!)... I don't know what is wrong with my technique, I wish someone would tell me.
Speaking of my department, there's this adorable Professor. Adorable because... well... let me show you what he looks like:
He specialises in the Tudor period, and he looks like he's walked straight out of it, too :D anyway, my point is, he keeps popping up in random documentaries! One of his other specialities is witchcraft/ paganism. The things I can think of that I've seen him in include a documentary about the Great Fire of London, a Sunday magazine for women in an article about modern-day pagan women, a documentary about women accused of being Maxine Carr and how these accusations resemble witch-hunts, and tonight he appeared in a documentary about 'wild swimming' in which he introduced the presenter to a statue-thing... no, seriously, it was "Alice, this is [insert statue's name here]; [statue] this is Alice." - it was so funny! I was telling my boyfriend's mum about how Ronald pops up in all these programmes and that very night, I was watching the Great Fire of London documentary with her and there he was. The next day she saw him walking by the uni library. Lol! Bless him. I would love to study one of the things he specialises in but there aren't any options that he teaches next year which is a shame, and I'm also not particularly strong when it comes to Early Modern history and I'm not sure what I could do relating to witch-craft.
Anyway, I'm now rambling (as if I wasn't before...). I need to sleep. But I kind of don't see the point because if tonight is like most other nights it'll be broken, unrefreshing and frustrating. Meh. Will hopefully write about something more interesting soon.
Thursday, 29 July 2010
M.E. Awareness Video
Hey :)
So, I've been considering making an M.E. awareness video for YouTube for a while now.
The other day I attempted to make it - not as easy as I thought because ironically M.E. gets in the way!
Thought I'd post you a little video of outtakes so far (just from an hour of trying to make the video) - I haven't managed to get *anything* I can use yet and that hour tired me out for the rest of the day. Lol! Enjoy!
http://www.youtube.com/watch?v=EYKMzS3cyGA
So, I've been considering making an M.E. awareness video for YouTube for a while now.
The other day I attempted to make it - not as easy as I thought because ironically M.E. gets in the way!
Thought I'd post you a little video of outtakes so far (just from an hour of trying to make the video) - I haven't managed to get *anything* I can use yet and that hour tired me out for the rest of the day. Lol! Enjoy!
http://www.youtube.com/watch?v=EYKMzS3cyGA
Thursday, 22 July 2010
Insert imaginative title here
I'm afraid this isn't going to be a particularly interesting post, just a reflection of various things.
Firstly, I would like to offer those that have read my CFS/ ME blog post the most heartfelt thanks <3 considering struggling with words and thinking clearly is one of the symptoms of the illness that I find the most frustrating, it feels very surreal to have had such positive feedback telling me I've explained the illness really well! You are all more than welcome to share it with your friends if it helps them understand in any way. I'm sorry it's so long, I wish I could have made it shorter but there's so much to say - I could have gone on for much longer as well!
On the back of the blog post and the lovely feedback it got, I am planning to make a YouTube video based on what I talked about, purely as another way of hopefully raising awareness and trying to provide people with an insight into the illness.
I'm very excited about having the opportunity to share it in such a public way, though incredibly nervous because I'm self-conscious and I'm opening myself up not just to potential criticism for what I say, but also for how I say it and how I look etc. Because I was picked on in school I'm really worried about those sorts of things - but hopefully I won't receive any nasty comments so it won't matter ;-)
In other news, I started Duloxetine today. I was on Venlafaxine 150mg. To transfer me on to Duloxetine smoothly, my GP moved me down to Venlafaxine 75mg which I was on for a week, which ended yesterday. I haven't had any side effects from the Duloxetine that I've noticed but obviously it's very early on so my body might not be responding yet. I do think that I'm feeling the drop in dosage of Venlafaxine now though (obviously a delayed reaction). Last time I was reduced to 75mg I felt very, very foggy mentally and felt like I was looking at everything and nothing was registering, that sort of thing. That sensation is back again. I hope it goes away over the next couple of days as the Duloxetine kicks in but we'll see. On the plus side, today's actually been good M.E.-wise. I haven't been as bad as I usually am so it was nice to have a bit of freedom with what I could do.
What is bugging me at the moment is uni work. I have a 5000 word project overdue from May. I can't concentrate for long enough, I can't analyse deeply enough and I can't think clearly enough to grasp the ideas I want to write about, to conceptualise such complicated stuff. I study History, and the question is "how is the body depicted in Leni Riefenstahl's 'Olympia'?" (a film from 1936) so it's even harder - trying to work out how to analyse the film, what order to do so in, what to say about it, what I want my argument to be, which historians I'm going to bring in, and how to make it 'historical' rather than something more suited to film studies. I'm not very good at analysing visual images, especially when it's a documentary about the Olympics :| I also have two completely different opinions about the film but if I write them both I'm just going to contradict myself. What's worse is the department are so fussy and so bloody finicky about what they like in an essay, I have no idea what makes a 'good' essay and am struggling to work out exactly what it is I'm meant to be aiming for. I'm just really hitting a barrier with this and it's very very very frustrating as all I want to do is finish it and have a break, and not feel guilty for not doing uni work. I have two exams in September that I need to start revising for but the longer I work on the project the longer I put off exam revision as I can't cope with doing both at the same time.
Other than that there's not much going on, but eurgh I'm struggling.
Firstly, I would like to offer those that have read my CFS/ ME blog post the most heartfelt thanks <3 considering struggling with words and thinking clearly is one of the symptoms of the illness that I find the most frustrating, it feels very surreal to have had such positive feedback telling me I've explained the illness really well! You are all more than welcome to share it with your friends if it helps them understand in any way. I'm sorry it's so long, I wish I could have made it shorter but there's so much to say - I could have gone on for much longer as well!
On the back of the blog post and the lovely feedback it got, I am planning to make a YouTube video based on what I talked about, purely as another way of hopefully raising awareness and trying to provide people with an insight into the illness.
I'm very excited about having the opportunity to share it in such a public way, though incredibly nervous because I'm self-conscious and I'm opening myself up not just to potential criticism for what I say, but also for how I say it and how I look etc. Because I was picked on in school I'm really worried about those sorts of things - but hopefully I won't receive any nasty comments so it won't matter ;-)
In other news, I started Duloxetine today. I was on Venlafaxine 150mg. To transfer me on to Duloxetine smoothly, my GP moved me down to Venlafaxine 75mg which I was on for a week, which ended yesterday. I haven't had any side effects from the Duloxetine that I've noticed but obviously it's very early on so my body might not be responding yet. I do think that I'm feeling the drop in dosage of Venlafaxine now though (obviously a delayed reaction). Last time I was reduced to 75mg I felt very, very foggy mentally and felt like I was looking at everything and nothing was registering, that sort of thing. That sensation is back again. I hope it goes away over the next couple of days as the Duloxetine kicks in but we'll see. On the plus side, today's actually been good M.E.-wise. I haven't been as bad as I usually am so it was nice to have a bit of freedom with what I could do.
What is bugging me at the moment is uni work. I have a 5000 word project overdue from May. I can't concentrate for long enough, I can't analyse deeply enough and I can't think clearly enough to grasp the ideas I want to write about, to conceptualise such complicated stuff. I study History, and the question is "how is the body depicted in Leni Riefenstahl's 'Olympia'?" (a film from 1936) so it's even harder - trying to work out how to analyse the film, what order to do so in, what to say about it, what I want my argument to be, which historians I'm going to bring in, and how to make it 'historical' rather than something more suited to film studies. I'm not very good at analysing visual images, especially when it's a documentary about the Olympics :| I also have two completely different opinions about the film but if I write them both I'm just going to contradict myself. What's worse is the department are so fussy and so bloody finicky about what they like in an essay, I have no idea what makes a 'good' essay and am struggling to work out exactly what it is I'm meant to be aiming for. I'm just really hitting a barrier with this and it's very very very frustrating as all I want to do is finish it and have a break, and not feel guilty for not doing uni work. I have two exams in September that I need to start revising for but the longer I work on the project the longer I put off exam revision as I can't cope with doing both at the same time.
Other than that there's not much going on, but eurgh I'm struggling.
Sunday, 18 July 2010
The Invisible Illness
So, I'm struggling to sleep, which often happens.
I have been thinking about a short blog post I read earlier, and since I can't sleep and I keep having ideas going around in my head about writing my own take on it, I thought I'd jot some stuff down.
The original post:
Clicky
Now as much as I'd love to be able to write as eloquently as that, I sadly can't. I don't know why he gets the mental clarity to write like that and I don't... or maybe I just don't have his talent. Either way, JEALOUS. Don't say you weren't warned about how little sense I make sometimes. ;-)
Anyway, yes. CFS/ ME. I has it. *Thumbs up*
I think I've had it since I was 17ish.
What is it?
No one knows what causes it. The symptoms differ for most people. But CFS/ ME is essentially a label for a set of symptoms which plague people around the world, from all different backgrounds and walks of life. I don't like the name of it... CFS - Chronic Fatigue Syndrome - is just plain insulting. It sounds like the issue is purely fatigue. I WISH it was just that, as debilitating as that is on its own. And M.E.? Firstly, that stands for Myalgic Encephalomyelitis which, when you have a brain like cotton wool like most M.E. sufferers, is ironically difficult to spell and remember how to say. Secondly, if you don't put the dots in it just looks like a capitalised 'me', which is confusing ("I have ME" - "you have you? Eh?" - haha). And can also lead dicks like Matthew Wright to quip "haha, no wonder it's called M.E., because it's all ME ME ME" - fucking imbecile. I hope he wakes up with it one day and feels like a turd for ever saying that.
It's extremely misunderstood, stigmatised and most of the time I feel ashamed to say "I... er... have M.E.". If I say that, I usually say it while making inverted commas with my fingers. Why? Because it's literally just a name for a neurological condition no one really understands - it lacks definition in the medical world, let alone our everyday life. But I am embarrassed to say I have it, because of its reputation - people think 'ME sufferer' is synonymous with 'attention seeker', 'hypochondriac', 'lazy', 'tired', 'depressed', 'unmotivated', 'incapacity benefit bullshitter', 'someone who is full of shit', and, according to one of my family members, 'the effects of radiation from modern technology'. Riiiiiiiight. I may be more sympathetic to the latter if any of my symptoms went away when I was away from all technology, but alas this is not the case.
(EDIT: someone mentioned to me the inclusion of 'depressed' there sounding like that's not a valid thing by itself. That wasn't intended - what I mean by 'depressed' in this sense is people thinking that you must be in a depressed mood, and that's why you're tired or don't feel well. A depressed mood is entirely different from the illness depression, which isn't what I was alluding to there. Sorry if that offended anyone!)
Since no one knows what M.E. is, it feels silly to say you “have” it. I tend to use it simply as a label to describe my symptoms as I haven’t found another one that fits them better yet.
I think people assume that M.E. sufferers are essentially Andy Pipkin from Little Britain. They pretend they’re disabled, and when no one’s looking, they get up out of their wheelchairs and run around. Lol, if only :P
As I've alluded to in the title, it's an invisible illness. You can't really see the symptoms - well, correction, all you can see is our reaction to what we're feeling, but not the symptoms themselves. Often we'll look generally rough and tired and "blergh" but that's all you can really see, unless we full on collapse or something. But that's unlikely to happen in front of you, which makes it more difficult for us, as it's just another reason to believe we're making it up :P
Watch this, because it’s FREAKIN’ AWESOME!
SO MANY SUFFERERS have had the above experience with doctors. I know I have. They treat like you like a hypochrondriac/ imbecile/ child/ attention seeker and it's so upsetting.
There is no universal treatment currently. Some people get better naturally, some people have treatments that make them better, some people try every treatment under the sun and don’t get better. Some people try something, get better for a while, then relapse again. There’s no pattern. And every potential treatment is very expensive, so it’s difficult to know which to try, if any, when they could all be useless.
People make jokes. Yeah, it's funny. You've got to have a sense of humour about stuff like illness and whatever. But sometimes it can hurt. When someone says "hah, what are you doing up before 11am?" or "what are you doing awake!?", that kind of thing - yes, it's said innocently and with no bad intention. But trust me, I don't want to be asleep half the time. I don't want to not be able to get up most days. Though for clarification, I'll often have a sleepless night and be so fed up that I'll get up at 6am, and go back to bed at 10am, for example. So a lot of the time I'm ironically up before the people that take the piss of me 'waking up late'. It's all very well to make jokes about laziness, or about sleeping too much, or about being a hypochondriac, but who would choose to actually live like this? To be in bed half the day either sleeping or not feeling like getting up because you're too weak and dizzy and nauseated and tired? I could go on but my point is, this lifestyle is not a damn choice. I have so much I want to do, particularly active stuff. Why would anyone choose a life stuck in the house over getting out, seeing the world and doing things? It's BORING AS HELL. Why am I on the computer half the day? Because I have nothing else to do. I fall asleep after a few pages of a book, even. Facebook is my social life for the majority of the time, because I often can't go out and have a real one. No one wants to have to admit that.
I think YouTube videos trying to raise M.E. awareness perhaps propagate the situation with people thinking we're just being miserable self-pitying cretins. You know, the ones consisting of a montage of really melancholy music, the pictures of people looking tired and fed up, a few token words about what it's like to have the illness. It does look self-pitying and like M.E. is a cult of hypochondriacs. Hats off (I'm not wearing a hat, but still) to the people who make these videos because they do get across a certain aspect of it, and their intentions are to make people more aware of the illness... but yes, it's recently I've realised that maybe that's not the right approach. These videos fail to demonstrate that many of us have a sense of humour, just get on with it, and don't use the illness for attention or to justify staying in bed for that extra hour.
I don't want sympathy, just understanding. I can't speak for anyone else, but I personally can't stand it when people are like 'poor me'. Maybe this blog sounds like that's my perspective but I can assure you it's not, it's just all fact and I'm writing it down for the purpose of clarification and understanding, nothing else. Most M.E. sufferers I know are the most brave, strong people you could possibly meet. I don't think I'd count myself under that (although I am stronger than people seem to give me credit for), but there are certainly many of them. They deserve the credit that they really don't get. People are seen as amazing for coping with other neurological, physical disabilities such as MS, MND, and endless other afflictions... and yet M.E. still isn't taken seriously. Sufferers are just stereotyped and seen as wimps. But to cope so well with what they do is just admirable. So many of them have an amazing sense of humour, brightness, and joy that they bring to the lives of others. AYME (Association for Young people with M.E.) is a community I'm lucky enough to be a part of and its members are just so loving and caring. To have the strength to be that way despite everything is incredible.
I don't know if I'm going to get better, and if I am, when that will be. None of us do. We can't plan for our futures, we can't 'hope' for anything specific in our lives because it might not be possible to do those things. It's such a demoralising feeling and it makes it so hard to motivate yourself in everyday life.
I'm not going to go through my past with this, and I'm not going to tell you my life story. But I want to be a little more open about it, because ultimately it affects my everyday life, most things I do, my ability to socialise, who I am, etc etc etc. I often allude to the illness in my statuses but it never really gets across the whole picture. I don't mention it because I want sympathy, I mention it because I'm honest in my statuses about what I'm feeling and what I'm feeling is mostly connected to what the illness makes me feel physically and mentally.
I would like to clarify a few aspects of it... because I think people who see my statuses must think I'm a raving bloody looney, or have the most random days and friends imaginable. People reading my statuses must be like “what the bloody hell is wrong with her now!?” Hopefully my list detailing some of the effects of the illness will explain some of this.
I hope this isn’t misconstrued as a ‘poor little me’ list. I don’t think that, and it’s not intended to be anything like that. I’d just like to have a place where I can write it all down for people to look at if they want to understand the way I am.
(I doubt this is going to have much logical structure, it's going to be more a stream of consciousness than anything. I don't do logical structure, lol).
My symptoms and how they affect me.
Talk like Yoda do I often. The effects of M.E. are mainly neurological - sadly, that means they affect most of the body. That includes cognitive ability - i.e. thought, language, communication etc. It takes a LOT more effort to spell things properly these days, to get my words in the right order, to remember what I said 10 seconds ago. I forget what I'm talking about in the middle of a sentence. If I tell you a story, it will be the most long-winded crock of shit you've heard in a while. Some days I feel like there is such a thick fog in my head I'm not going to be able to anticipate what I will be doing 30 seconds from now, and the task of thinking what to make for dinner feels like a rocket science mission, let alone actually cooking it. I can't remember the words I want to use. With essays for example - I know I will have a really great concept in my head, and I have the intelligence and vocabulary stored in my brain to express it well - but actually accessing that memory and that information is at times impossible. It's constantly having the word you want on the tip of your tongue but not quite being able to get it out. Cross words are the most irritating activity ever. I struggle to generate ideas, or find inspiration for anything. I feel like a bit of a zombie in cognitive terms. I feel generally 'slow'. I struggle to follow conversation. Before being diagnosed with M.E. (I had it, but it hadn't been figured out yet) I was diagnosed with dyslexia. Did I have dyslexia when I was younger? No. I've always been really good with spelling, words and language. But I've got acquired dyslexia, i.e. it's developed at some point since getting M.E., I presume. It fits in with the cognitive difficulties very well.
Even if I'm having a day of relative mental clarity, that doesn't mean I'm free of physical symptoms. So while mentally I might be able to concentrate on uni work for example, I might be feeling like I'm going to throw up at the same time, or have a really bad headache, or not be able to stay awake, and therefore can't do anything constructive.
M.E. is a hypochondriac's heaven. "I feel sick. I've got a really bad headache. I'm unbearably tired. I can't stay awake. My eyes have gone all blurry. I have shooting pains in my arm. I’m having heart palpitations. My back aches. My wrist hurts. Daylight is hurting my eyes. My legs feel like they have got anchors stuck to them. I'm dizzy. I have a sore throat. I can't stand up without feeling like I'm going to faint. I’m so weak. I can’t walk anymore." you get the picture.
I get colds and feel run down all the time. Especially if I don't sleep. If I don't sleep I'll wake up sniffly and with a sore throat. That part of it doesn't bother me, they're only cold-like symptoms (I would happily have a permanent cold instead of M.E.!), but it's just proof of how easily I get run down.
It feels like my skeleton's too weak to support my body. That just about sums up the weakness part of it.
It varies with everyone. Just today I was talking to a friend with M.E. who had just gone for a run. You might not expect that we should be able to do that, but some can, it's just that they'll suffer for it afterwards. With me, I can't run more than a couple of metres in the first place without hyperventilating, being out of breath and feeling faint. People have different abilities.
I live a vampire's existence. I'm whiter than white. That's a natural thing, I'm naturally very pale. But to be fair I don't go out much or see much daylight either. I sleep a lot in the day and often have sleepless nights, though the two aren't always connected. Daylight hurts my eyes (no, really, I'm serious). I think if I lived in darkness for the majority of the day I'd cope better... but everyone needs the benefits of sunlight or your body's chemicals screw up.
Speaking of chemicals, I have chemical sensitivities. To things I use on my body, and things I put in it. Medication has bizarre effects on me.
I can never predict how I'm going to feel on any given day. Or, for that matter, at any given time. A day can start off okay and end horribly, and vice versa.
You'd think the amount of sleep I get would make a difference... but it doesn't. When I wake up it's like I'd never been to sleep. It's so unrefreshing it's like there was no bloody point in it. But I can't help going to sleep either, even if it is pointless. I can't stay awake sometimes, I physically find it so hard to fight it, my eyes are burning and my eyelids are closing by themselves, even if I had a good deal of ‘sleep’ the night before.
I have to sit down in the shower because I feel like I'm going to faint if I'm standing.
If I get up too quickly in any situation my vision goes for a few seconds and I have to lean on a wall as I feel like I'm going to faint.
I go through phases of having very little appetite and will lose weight... then I'll go through more normal phases. But I never really like food because of the nausea, and because of appetite issues... yet I don't really lose much weight in a 'normal' phase because I can do so little activity.
I feel nauseous and have a headache about 80% of the time.
I get hypersensitive to sound and light. Speaks for itself really.
I have hypermobility syndrome. I don't know if that's related to the CFS/ ME or if the symptoms I get are entirely separate. But essentially I can move my joints in ways I shouldn't be able to. They're constantly clicking, too. They get really sore easily. My hips, wrists, ankles and knees drive me crazy. I'm like 21 going on 80.
I really struggle with stairs. But I am embarrassed about it, so I try and hide it. Going up stairs makes my muscles burn. Same with hills.
I struggle to breathe on exertion. It can come on after 10 minutes or 30 seconds, it varies all the time, but I have an inhaler to help with it. It helps a bit, but it doesn't make it stop. It also makes me really jittery. I have to rest all the time and have loads of stops. Hills have become my worst nightmare. Sometimes I can walk for half an hour, sometimes I can only manage a couple of minutes.
If I overdo it my symptoms can include being feverish, hot and cold sweats, aching everywhere, intense nausea and headaches... in fact I can't be arsed to finish the list.
The muscle aches are often overwhelming.
I sweat so much it's not even funny. I didn't used to be sweaty, that's the annoying thing. But now, I'll walk for 30 seconds and my back becomes a waterfall and generally I'm all clammy everywhere. Yummy.
I don't manage to eat big portions.
I can't write stuff by hand anymore. If I can it has to be short. My hand/ arm aches too much and my hand and fingers will cramp up and they ache so much. Speaking of cramp, my hands and feet get it all the time.
It's often easier to pretend there's nothing wrong than to be honest. Because people misinterpret the honesty, or they misunderstand the illness, or it takes too much energy to explain what's wrong, or it's embarrassing, and you feel judged.
Sometimes my jaw aches too much to eat anything I have to chew loads. I'll do it anyway but it hurts, and it's not nice. Sometimes if I push it too much I end up slurring when I speak because I don't have the energy to move my jaw.
When I'm in the shower my arms feel too heavy to lift sometimes and it's particularly hard to wash my hair. I hate holding the hairdryer afterwards as well because my arms feel too weak to hold it. How pathetic does that sound...
I have random food sensitivities. I can’t drink coffee. Caffeine isn’t the issue, it’s the coffee itself – I can’t even have decaf. Which is REALLY ANNOYING because I love the taste of coffee. If I drink it I get an upset stomach, nausea, cold sweats, headaches, trembling, etc. Sugar seems to affect me more than it used to. I can have a bite of a chocolate bar before feeling sick... then that’s it for a few hours or until the next day. I still eat sweet stuff like biscuits and cake, but not concentrated like in pure chocolate or sweets. Sugar seems to give me the same ‘buzzy’ feeling as when I can’t sleep, but at the same time also a headache, nausea and general ‘blergh’ness. I also can’t drink alcohol. It exacerbates the physical stuff I feel... the fatigue, the nausea, the headaches, the ‘slow’ness, the out of control feeling, the sweating, ... on occasion it can make me giggly which amuses me and others I’m with but it really isn’t worth it considering all the other things I get with it. Then I get the same hangover type feeling everyone else has after drinking, but I get it much sooner, and even if I’ve only had one or two glasses of wine. Does it sound worth it to you?
My temperature buggers up all the time. It can be boiling hot and I can be shivering with cold and vice versa. I can be warm but shivering, cold but sweating.
I swear to god I’m the most forgetful, scatty person I know.
I get muscle spasms. Not particularly often, but a couple of times a day. My arm will just randomly flail out. My leg will fly in the air. I’ll just spontaneously twitch. And every time it makes me jump. Though I always end up laughing at myself. :D
Sometimes I will come across as though I’m drunk. Not on purpose, and not even for any particular reason as far as I’m aware physically. It just happens sometimes, I’m just suddenly more mentally slow than I normally am and slurry and tired so all that in combination makes for a very thick-sounding Charlotte.
I feel like I have a giant permanent hangover. That's the most simple, short way of putting it.
A lot of people, when told that someone has “Chronic Fatigue Syndrome”, will go “yeah and? I get tired too” – no you don’t. Believe me you don’t know the first fucking thing about tired!
I feel like I go on about the M.E. all the time to my healthy friends. I feel so guilty for doing that but I panic that they won't understand why I don't seem with it, why I look down if I do (I'm probably just feeling really unwell), why I'm not very engaged with them (normally because I'm half asleep)... it's like I need to always reel out disclaimers about what I'm like on any given day and I have to explain myself. They never ask me to justify my behaviour or how I'm coming across, but I'm embarrassed that they might think that I would be like that normally.
I'm not going to pretend I was particularly active before I got like this because I wasn't. I couldn't be bothered to do much like any other teenager. But what I do know is that if I wanted to do something I could, and also I wouldn't suffer afterwards. Now I miss simple things like going for a really long walk, going for a run, going swimming, doing anything sporty.
I'm really struggling with uni. Admittedly, I'm lucky to even be at uni when others aren't well enough. But I massively struggle with reading because of the dyslexia issues, and because I get so tired after a couple of pages. I find it hard to take in what I do read, and what I do read is never a lot (and certainly never enough). My version of 'wide reading' consists of scanning a few pages of a few books. Essays are a nightmare. Problems with word-finding, ideas, expressing concepts, thinking things through, conceptualising structure, etc... make it pretty much torture to try and write something decent. My term-time existence consists of uni work, sleeping and feeling crappy. What kind of uni experience is that?
I push myself too hard and I'm always feeling guilty and in denial of sorts about the fact that I haven't achieved what I want to. I never feel like I've done enough. Asking myself "what have I achieved today?" is not even a worthwhile activity, it's just upsetting.
My AYME friends write posts on my wall which to most people must look like the most random things ever. "I walked 20 metres today! YAY!", "I got into the shower with my socks on", etc. Some sufferers celebrate walking a few metres because they struggle to do so. To actually manage it is a massive achievement. We also like sharing stupid little things we've done, i.e. "today I got into the shower with my socks on".
I might come across as anti-social sometimes because I don't go out much. Believe me, that's not choice - and if it is, it's just because my past experience tells me that the best idea is to stay in and not push myself or I'll suffer. I can go out and socialise for about an hour and then I’m exhausted.
I’ve lost the ability to tell what’s M.E, what’s a bug or virus or general illness, and what’s normal. I don't remember the last time I felt normal, or how that felt.
Not being able to sleep is the most irritating contradiction. You’re too sleepy and tired to do anything with your body, let alone anything constructive. But you’re too ‘buzzy’ to sleep - you have this overwhelming desire from the core of your body to be moving, to be ‘doing’ something. It hurts to open your eyes and they’re burning with tiredness but you can’t keep them closed because you just want to open them again. I fidget, because I can’t keep still. Even though every time I fidget it reminds me that something hurts or aches or something is uncomfortable. I’m never comfortable. No position is quite right. I jiggle my legs and my feet and I flail my arms everywhere even though my muscles burn afterwards. I just have this insatiable desire to be moving and to be doing. It’s like the times I can’t sleep it’s my body’s way of saying “I’m BORED of all this sitting around, DO something” but physically doing it feels impossible so it’s like being in limbo, you don’t know what to do with yourself. It’s almost like a swarm of very irritated bees being stuck in a jar. Or being locked in a broken down car – you can’t call anyone, and you can’t get out and walk. You’re just stuck in it with all that frustration of being stuck somewhere you don’t belong and don’t want to be, in something that isn’t working how it should be, and isn’t getting you where you want to go. In fact I think that’s a damn good analogy *pats self on back* :P
On an average day, the contents of my handbag include: a bottle of water (any physical exertion makes me insanely thirsty), ibuprofen, metaclopramide, a cardigan on a hot day, sunglasses (even on a day that isn’t sunny), an inhaler (even though I’m not asthmatic, but just for the breathing issues I get with exertion)... I feel the need to be prepared for whatever my body decides it’s going to feel that day.
I held a small, newborn baby yesterday for about 15 minutes. Each of my arms felt like they weighed about three stone for the rest of the night.
I’m petrified of being in a situation where I’m overwhelmingly tired and can’t get home and go to bed. Sad, but true. I'm also afraid of feeling really unwell, especially really nauseous, in a social situation where I'm trapped and I can't leave. I’ve been sitting in lectures where I just can’t keep my eyes open and am nodding off but painfully aware of the fact that it’s an inappropriate situation to be doing so. The energy it takes to fight that heavy sleep is just too much. On so many occasions I’ve trundled home after a lecture – I’ve bumbled along like a drunk snail, but one with a rocket up its arse - because I can’t get home quick enough to flop into bed and just let it take my weight and my exhaustion.
I lack motivation to do most things because what’s the point when I’m only going to feel physically shit anyway and then have the mental frustration of that adding to my tiredness and lack of energy.
Mental exertion --> physical consequences. You’d be surprised. The more I think the more tired and achey I get. Uni work is a nasty paradox. I know I have to be doing it, I know I need to completely engage with it and throw myself in, but I know that the deeper I get into it the more I’ll suffer physically, the more tired I’ll be, the longer I’ll feel weaker.
If I overdo it my neck and armpit glands swell up and are sore. That’s not when the symptoms start though, it’s just a sign that I’ve done too much; the symptoms are there all the time.
I saw a status on an ME sufferer’s Facebook today which really made me smile. “Q. Is there any time of day during which you can’t sit an examination? A. Yes. All of it.” – that pretty much sums it up.
I HATE people doing things for me, I really do. I feel uncomfortable about it. I don’t like sympathy. I like to get on with things, I like to be independent, I like to do things myself, I don’t like to feel that I can’t do things, or feel restricted. Jon is amazing and I don’t know what I’d do without his help, but I wish it didn’t come to that and I wish I didn’t have to be dependent on his kindness sometimes.
I passed my driving test a couple of years ago (after taking numerous tests because I couldn’t concentrate and kept making silly mistakes and failing). But since passing I haven’t let myself drive because my concentration is that bad, I don’t trust it. If it’s just myself I’m putting at risk, fine – but when it’s other people it’s not fair. I used to really enjoy driving lessons. I got to drive without worrying too much if I did anything silly because the instructor was there with their own controls and could tell me or remind me what to do. But when I’m on my own and it’s left to my own memory to look at road signs and take in what they mean, to focus and not feel sleepy, to do loads of things all at once... it just doesn’t happen, and I’m in a daze doing things on autopilot which may or may not be correct. That scares me.
M.E. sufferers know the meaning of ‘wasted time’, sitting in bed being bored, wanting to do something constructive but not being able to..
When I leave uni, if I’m not any better than I am now, I’m probably going to have to be on incapacity benefit and be bored at home for god knows how long. I can’t emphasise how much I don’t want that - I didn’t go to uni and work hard on a degree just to sit around on my arse, to work part time for the rest of my life, or to do nothing with it, to feel useless and incompetent and incapacitated. I went there to study what I love and to give myself a chance at a career I enjoy. I LOVE being busy, having stuff to do, being needed, having a routine, having a challenge. But that isn’t going to happen any time soon and I don’t see a choice but to stay at home. I couldn’t work full time – and I could probably work part-time just about, but only with things in place to support the fact that I need a lot of rest-breaks for as long as I need each time, that when I need to sleep I need to sleep and find it very difficult to stay awake, sometimes my nausea is overwhelming, sometimes I can’t face light and noise, sometimes my headaches get really intense, sometimes I seem drunk, I can never concentrate... I could go on, you get the picture. But do you know any part-time job that would happily put up with all those things from an employee? I certainly don’t.
I could write so much more about this, I could write and explain more symptoms, talk about more experiences with it, etc. But it’s already too long, and my brain feels like mush (I’ve written this over two days). So I’m going to leave it there.
What I've learned
Despite all the crappy parts, I have learned a lot and been lucky in many respects. I'm certainly lucky to be as healthy as I am in comparison to a lot of people I know who are more severe than me.
Apart from a shitty life, lol, I have actually gained things from having M.E. such as a bunch of amazing friends and acquaintances. I feel blessed that I've met such wonderful people through this illness.
I've also been fortunate enough to learn a lot of lessons, including: just how precious health is; generally what my body’s telling me; just how much difference it can make to say something nice to someone, and to show a little love to people you don’t even know that well; that we should appreciate the small things; that there are some people who aren't worth my precious time and energy; just how strong the human spirit can be and the human capacity for compassion and bravery (not really my own, I’ve just been struck by other people’s); that ‘achievement’ can be defined in any way and can consist of things taken for granted by those with a good deal of health; that I may have less energy than I used to but I have a hell of a lot more love to give from what I’ve learned and the people I’ve met; an awareness of just how judgemental people can be towards people who have a disability and that there is still an unbelievable amount of stigma attached; that life is too short to care what people think of you too much; that people don’t seem to understand that you can have physical problems without being mentally handicapped; that a supportive community is a wonderful thing; that brain fog can create some hilarious situations; I could go on for much longer.
I think even if and when I’m recovered some day, I’m still going to be involved in M.E. charities. Even on days I’m not feeling too bad, I’m thinking about everyone who is housebound or bedbound and counting myself lucky. Even when I don’t know people with M.E. (though I hope to keep in contact with those I do), I’m still going to do my best to raise money for ME charities, offer support to those who are suffering... because I’ve got to know and love so many sufferers and see how awful it is to go through what they do everyday, and I empathise with a degree of it myself. When you have personal experience of an illness like this, I imagine it’s hard to let go and just move on if and when you get better because you’re thinking of those who are unfortunate enough to still be stuck in the bubble.
I hope that if nothing else, this has helped at least one person understand M.E. a little better, and perhaps refrain from judgement when dealing with anyone that has it because it’s really not as simple as you would think from the stereotypes. That will justify the energy it took me to write this. M.E. maybe one of those illnesses you cringe at when you hear it out loud because of the reputation it’s got - but believe me it doesn’t deserve it, and you’d be surprised just how debilitating it can be.
I hope that this has done justice to the M.E. experience, even if it’s specific only to my own symptoms.
I would also like to take this opportunity to thank people for being so wonderful and understanding about the way I am – particularly Jon, Erin, Zoe, Chris (I accidentally left him out before, but he's been just as awesome as everyone else) and of course all my AYME lovelies. :)
Oh, last point: I'm eligible for a free bus pass. I think when I get it, I'm going to rename myself Doris.
I have been thinking about a short blog post I read earlier, and since I can't sleep and I keep having ideas going around in my head about writing my own take on it, I thought I'd jot some stuff down.
The original post:
Clicky
Now as much as I'd love to be able to write as eloquently as that, I sadly can't. I don't know why he gets the mental clarity to write like that and I don't... or maybe I just don't have his talent. Either way, JEALOUS. Don't say you weren't warned about how little sense I make sometimes. ;-)
Anyway, yes. CFS/ ME. I has it. *Thumbs up*
I think I've had it since I was 17ish.
What is it?
No one knows what causes it. The symptoms differ for most people. But CFS/ ME is essentially a label for a set of symptoms which plague people around the world, from all different backgrounds and walks of life. I don't like the name of it... CFS - Chronic Fatigue Syndrome - is just plain insulting. It sounds like the issue is purely fatigue. I WISH it was just that, as debilitating as that is on its own. And M.E.? Firstly, that stands for Myalgic Encephalomyelitis which, when you have a brain like cotton wool like most M.E. sufferers, is ironically difficult to spell and remember how to say. Secondly, if you don't put the dots in it just looks like a capitalised 'me', which is confusing ("I have ME" - "you have you? Eh?" - haha). And can also lead dicks like Matthew Wright to quip "haha, no wonder it's called M.E., because it's all ME ME ME" - fucking imbecile. I hope he wakes up with it one day and feels like a turd for ever saying that.
It's extremely misunderstood, stigmatised and most of the time I feel ashamed to say "I... er... have M.E.". If I say that, I usually say it while making inverted commas with my fingers. Why? Because it's literally just a name for a neurological condition no one really understands - it lacks definition in the medical world, let alone our everyday life. But I am embarrassed to say I have it, because of its reputation - people think 'ME sufferer' is synonymous with 'attention seeker', 'hypochondriac', 'lazy', 'tired', 'depressed', 'unmotivated', 'incapacity benefit bullshitter', 'someone who is full of shit', and, according to one of my family members, 'the effects of radiation from modern technology'. Riiiiiiiight. I may be more sympathetic to the latter if any of my symptoms went away when I was away from all technology, but alas this is not the case.
(EDIT: someone mentioned to me the inclusion of 'depressed' there sounding like that's not a valid thing by itself. That wasn't intended - what I mean by 'depressed' in this sense is people thinking that you must be in a depressed mood, and that's why you're tired or don't feel well. A depressed mood is entirely different from the illness depression, which isn't what I was alluding to there. Sorry if that offended anyone!)
Since no one knows what M.E. is, it feels silly to say you “have” it. I tend to use it simply as a label to describe my symptoms as I haven’t found another one that fits them better yet.
I think people assume that M.E. sufferers are essentially Andy Pipkin from Little Britain. They pretend they’re disabled, and when no one’s looking, they get up out of their wheelchairs and run around. Lol, if only :P
As I've alluded to in the title, it's an invisible illness. You can't really see the symptoms - well, correction, all you can see is our reaction to what we're feeling, but not the symptoms themselves. Often we'll look generally rough and tired and "blergh" but that's all you can really see, unless we full on collapse or something. But that's unlikely to happen in front of you, which makes it more difficult for us, as it's just another reason to believe we're making it up :P
Watch this, because it’s FREAKIN’ AWESOME!
SO MANY SUFFERERS have had the above experience with doctors. I know I have. They treat like you like a hypochrondriac/ imbecile/ child/ attention seeker and it's so upsetting.
There is no universal treatment currently. Some people get better naturally, some people have treatments that make them better, some people try every treatment under the sun and don’t get better. Some people try something, get better for a while, then relapse again. There’s no pattern. And every potential treatment is very expensive, so it’s difficult to know which to try, if any, when they could all be useless.
People make jokes. Yeah, it's funny. You've got to have a sense of humour about stuff like illness and whatever. But sometimes it can hurt. When someone says "hah, what are you doing up before 11am?" or "what are you doing awake!?", that kind of thing - yes, it's said innocently and with no bad intention. But trust me, I don't want to be asleep half the time. I don't want to not be able to get up most days. Though for clarification, I'll often have a sleepless night and be so fed up that I'll get up at 6am, and go back to bed at 10am, for example. So a lot of the time I'm ironically up before the people that take the piss of me 'waking up late'. It's all very well to make jokes about laziness, or about sleeping too much, or about being a hypochondriac, but who would choose to actually live like this? To be in bed half the day either sleeping or not feeling like getting up because you're too weak and dizzy and nauseated and tired? I could go on but my point is, this lifestyle is not a damn choice. I have so much I want to do, particularly active stuff. Why would anyone choose a life stuck in the house over getting out, seeing the world and doing things? It's BORING AS HELL. Why am I on the computer half the day? Because I have nothing else to do. I fall asleep after a few pages of a book, even. Facebook is my social life for the majority of the time, because I often can't go out and have a real one. No one wants to have to admit that.
I think YouTube videos trying to raise M.E. awareness perhaps propagate the situation with people thinking we're just being miserable self-pitying cretins. You know, the ones consisting of a montage of really melancholy music, the pictures of people looking tired and fed up, a few token words about what it's like to have the illness. It does look self-pitying and like M.E. is a cult of hypochondriacs. Hats off (I'm not wearing a hat, but still) to the people who make these videos because they do get across a certain aspect of it, and their intentions are to make people more aware of the illness... but yes, it's recently I've realised that maybe that's not the right approach. These videos fail to demonstrate that many of us have a sense of humour, just get on with it, and don't use the illness for attention or to justify staying in bed for that extra hour.
I don't want sympathy, just understanding. I can't speak for anyone else, but I personally can't stand it when people are like 'poor me'. Maybe this blog sounds like that's my perspective but I can assure you it's not, it's just all fact and I'm writing it down for the purpose of clarification and understanding, nothing else. Most M.E. sufferers I know are the most brave, strong people you could possibly meet. I don't think I'd count myself under that (although I am stronger than people seem to give me credit for), but there are certainly many of them. They deserve the credit that they really don't get. People are seen as amazing for coping with other neurological, physical disabilities such as MS, MND, and endless other afflictions... and yet M.E. still isn't taken seriously. Sufferers are just stereotyped and seen as wimps. But to cope so well with what they do is just admirable. So many of them have an amazing sense of humour, brightness, and joy that they bring to the lives of others. AYME (Association for Young people with M.E.) is a community I'm lucky enough to be a part of and its members are just so loving and caring. To have the strength to be that way despite everything is incredible.
I don't know if I'm going to get better, and if I am, when that will be. None of us do. We can't plan for our futures, we can't 'hope' for anything specific in our lives because it might not be possible to do those things. It's such a demoralising feeling and it makes it so hard to motivate yourself in everyday life.
I'm not going to go through my past with this, and I'm not going to tell you my life story. But I want to be a little more open about it, because ultimately it affects my everyday life, most things I do, my ability to socialise, who I am, etc etc etc. I often allude to the illness in my statuses but it never really gets across the whole picture. I don't mention it because I want sympathy, I mention it because I'm honest in my statuses about what I'm feeling and what I'm feeling is mostly connected to what the illness makes me feel physically and mentally.
I would like to clarify a few aspects of it... because I think people who see my statuses must think I'm a raving bloody looney, or have the most random days and friends imaginable. People reading my statuses must be like “what the bloody hell is wrong with her now!?” Hopefully my list detailing some of the effects of the illness will explain some of this.
I hope this isn’t misconstrued as a ‘poor little me’ list. I don’t think that, and it’s not intended to be anything like that. I’d just like to have a place where I can write it all down for people to look at if they want to understand the way I am.
(I doubt this is going to have much logical structure, it's going to be more a stream of consciousness than anything. I don't do logical structure, lol).
My symptoms and how they affect me.
Talk like Yoda do I often. The effects of M.E. are mainly neurological - sadly, that means they affect most of the body. That includes cognitive ability - i.e. thought, language, communication etc. It takes a LOT more effort to spell things properly these days, to get my words in the right order, to remember what I said 10 seconds ago. I forget what I'm talking about in the middle of a sentence. If I tell you a story, it will be the most long-winded crock of shit you've heard in a while. Some days I feel like there is such a thick fog in my head I'm not going to be able to anticipate what I will be doing 30 seconds from now, and the task of thinking what to make for dinner feels like a rocket science mission, let alone actually cooking it. I can't remember the words I want to use. With essays for example - I know I will have a really great concept in my head, and I have the intelligence and vocabulary stored in my brain to express it well - but actually accessing that memory and that information is at times impossible. It's constantly having the word you want on the tip of your tongue but not quite being able to get it out. Cross words are the most irritating activity ever. I struggle to generate ideas, or find inspiration for anything. I feel like a bit of a zombie in cognitive terms. I feel generally 'slow'. I struggle to follow conversation. Before being diagnosed with M.E. (I had it, but it hadn't been figured out yet) I was diagnosed with dyslexia. Did I have dyslexia when I was younger? No. I've always been really good with spelling, words and language. But I've got acquired dyslexia, i.e. it's developed at some point since getting M.E., I presume. It fits in with the cognitive difficulties very well.
Even if I'm having a day of relative mental clarity, that doesn't mean I'm free of physical symptoms. So while mentally I might be able to concentrate on uni work for example, I might be feeling like I'm going to throw up at the same time, or have a really bad headache, or not be able to stay awake, and therefore can't do anything constructive.
M.E. is a hypochondriac's heaven. "I feel sick. I've got a really bad headache. I'm unbearably tired. I can't stay awake. My eyes have gone all blurry. I have shooting pains in my arm. I’m having heart palpitations. My back aches. My wrist hurts. Daylight is hurting my eyes. My legs feel like they have got anchors stuck to them. I'm dizzy. I have a sore throat. I can't stand up without feeling like I'm going to faint. I’m so weak. I can’t walk anymore." you get the picture.
I get colds and feel run down all the time. Especially if I don't sleep. If I don't sleep I'll wake up sniffly and with a sore throat. That part of it doesn't bother me, they're only cold-like symptoms (I would happily have a permanent cold instead of M.E.!), but it's just proof of how easily I get run down.
It feels like my skeleton's too weak to support my body. That just about sums up the weakness part of it.
It varies with everyone. Just today I was talking to a friend with M.E. who had just gone for a run. You might not expect that we should be able to do that, but some can, it's just that they'll suffer for it afterwards. With me, I can't run more than a couple of metres in the first place without hyperventilating, being out of breath and feeling faint. People have different abilities.
I live a vampire's existence. I'm whiter than white. That's a natural thing, I'm naturally very pale. But to be fair I don't go out much or see much daylight either. I sleep a lot in the day and often have sleepless nights, though the two aren't always connected. Daylight hurts my eyes (no, really, I'm serious). I think if I lived in darkness for the majority of the day I'd cope better... but everyone needs the benefits of sunlight or your body's chemicals screw up.
Speaking of chemicals, I have chemical sensitivities. To things I use on my body, and things I put in it. Medication has bizarre effects on me.
I can never predict how I'm going to feel on any given day. Or, for that matter, at any given time. A day can start off okay and end horribly, and vice versa.
You'd think the amount of sleep I get would make a difference... but it doesn't. When I wake up it's like I'd never been to sleep. It's so unrefreshing it's like there was no bloody point in it. But I can't help going to sleep either, even if it is pointless. I can't stay awake sometimes, I physically find it so hard to fight it, my eyes are burning and my eyelids are closing by themselves, even if I had a good deal of ‘sleep’ the night before.
I have to sit down in the shower because I feel like I'm going to faint if I'm standing.
If I get up too quickly in any situation my vision goes for a few seconds and I have to lean on a wall as I feel like I'm going to faint.
I go through phases of having very little appetite and will lose weight... then I'll go through more normal phases. But I never really like food because of the nausea, and because of appetite issues... yet I don't really lose much weight in a 'normal' phase because I can do so little activity.
I feel nauseous and have a headache about 80% of the time.
I get hypersensitive to sound and light. Speaks for itself really.
I have hypermobility syndrome. I don't know if that's related to the CFS/ ME or if the symptoms I get are entirely separate. But essentially I can move my joints in ways I shouldn't be able to. They're constantly clicking, too. They get really sore easily. My hips, wrists, ankles and knees drive me crazy. I'm like 21 going on 80.
I really struggle with stairs. But I am embarrassed about it, so I try and hide it. Going up stairs makes my muscles burn. Same with hills.
I struggle to breathe on exertion. It can come on after 10 minutes or 30 seconds, it varies all the time, but I have an inhaler to help with it. It helps a bit, but it doesn't make it stop. It also makes me really jittery. I have to rest all the time and have loads of stops. Hills have become my worst nightmare. Sometimes I can walk for half an hour, sometimes I can only manage a couple of minutes.
If I overdo it my symptoms can include being feverish, hot and cold sweats, aching everywhere, intense nausea and headaches... in fact I can't be arsed to finish the list.
The muscle aches are often overwhelming.
I sweat so much it's not even funny. I didn't used to be sweaty, that's the annoying thing. But now, I'll walk for 30 seconds and my back becomes a waterfall and generally I'm all clammy everywhere. Yummy.
I don't manage to eat big portions.
I can't write stuff by hand anymore. If I can it has to be short. My hand/ arm aches too much and my hand and fingers will cramp up and they ache so much. Speaking of cramp, my hands and feet get it all the time.
It's often easier to pretend there's nothing wrong than to be honest. Because people misinterpret the honesty, or they misunderstand the illness, or it takes too much energy to explain what's wrong, or it's embarrassing, and you feel judged.
Sometimes my jaw aches too much to eat anything I have to chew loads. I'll do it anyway but it hurts, and it's not nice. Sometimes if I push it too much I end up slurring when I speak because I don't have the energy to move my jaw.
When I'm in the shower my arms feel too heavy to lift sometimes and it's particularly hard to wash my hair. I hate holding the hairdryer afterwards as well because my arms feel too weak to hold it. How pathetic does that sound...
I have random food sensitivities. I can’t drink coffee. Caffeine isn’t the issue, it’s the coffee itself – I can’t even have decaf. Which is REALLY ANNOYING because I love the taste of coffee. If I drink it I get an upset stomach, nausea, cold sweats, headaches, trembling, etc. Sugar seems to affect me more than it used to. I can have a bite of a chocolate bar before feeling sick... then that’s it for a few hours or until the next day. I still eat sweet stuff like biscuits and cake, but not concentrated like in pure chocolate or sweets. Sugar seems to give me the same ‘buzzy’ feeling as when I can’t sleep, but at the same time also a headache, nausea and general ‘blergh’ness. I also can’t drink alcohol. It exacerbates the physical stuff I feel... the fatigue, the nausea, the headaches, the ‘slow’ness, the out of control feeling, the sweating, ... on occasion it can make me giggly which amuses me and others I’m with but it really isn’t worth it considering all the other things I get with it. Then I get the same hangover type feeling everyone else has after drinking, but I get it much sooner, and even if I’ve only had one or two glasses of wine. Does it sound worth it to you?
My temperature buggers up all the time. It can be boiling hot and I can be shivering with cold and vice versa. I can be warm but shivering, cold but sweating.
I swear to god I’m the most forgetful, scatty person I know.
I get muscle spasms. Not particularly often, but a couple of times a day. My arm will just randomly flail out. My leg will fly in the air. I’ll just spontaneously twitch. And every time it makes me jump. Though I always end up laughing at myself. :D
Sometimes I will come across as though I’m drunk. Not on purpose, and not even for any particular reason as far as I’m aware physically. It just happens sometimes, I’m just suddenly more mentally slow than I normally am and slurry and tired so all that in combination makes for a very thick-sounding Charlotte.
I feel like I have a giant permanent hangover. That's the most simple, short way of putting it.
A lot of people, when told that someone has “Chronic Fatigue Syndrome”, will go “yeah and? I get tired too” – no you don’t. Believe me you don’t know the first fucking thing about tired!
I feel like I go on about the M.E. all the time to my healthy friends. I feel so guilty for doing that but I panic that they won't understand why I don't seem with it, why I look down if I do (I'm probably just feeling really unwell), why I'm not very engaged with them (normally because I'm half asleep)... it's like I need to always reel out disclaimers about what I'm like on any given day and I have to explain myself. They never ask me to justify my behaviour or how I'm coming across, but I'm embarrassed that they might think that I would be like that normally.
I'm not going to pretend I was particularly active before I got like this because I wasn't. I couldn't be bothered to do much like any other teenager. But what I do know is that if I wanted to do something I could, and also I wouldn't suffer afterwards. Now I miss simple things like going for a really long walk, going for a run, going swimming, doing anything sporty.
I'm really struggling with uni. Admittedly, I'm lucky to even be at uni when others aren't well enough. But I massively struggle with reading because of the dyslexia issues, and because I get so tired after a couple of pages. I find it hard to take in what I do read, and what I do read is never a lot (and certainly never enough). My version of 'wide reading' consists of scanning a few pages of a few books. Essays are a nightmare. Problems with word-finding, ideas, expressing concepts, thinking things through, conceptualising structure, etc... make it pretty much torture to try and write something decent. My term-time existence consists of uni work, sleeping and feeling crappy. What kind of uni experience is that?
I push myself too hard and I'm always feeling guilty and in denial of sorts about the fact that I haven't achieved what I want to. I never feel like I've done enough. Asking myself "what have I achieved today?" is not even a worthwhile activity, it's just upsetting.
My AYME friends write posts on my wall which to most people must look like the most random things ever. "I walked 20 metres today! YAY!", "I got into the shower with my socks on", etc. Some sufferers celebrate walking a few metres because they struggle to do so. To actually manage it is a massive achievement. We also like sharing stupid little things we've done, i.e. "today I got into the shower with my socks on".
I might come across as anti-social sometimes because I don't go out much. Believe me, that's not choice - and if it is, it's just because my past experience tells me that the best idea is to stay in and not push myself or I'll suffer. I can go out and socialise for about an hour and then I’m exhausted.
I’ve lost the ability to tell what’s M.E, what’s a bug or virus or general illness, and what’s normal. I don't remember the last time I felt normal, or how that felt.
Not being able to sleep is the most irritating contradiction. You’re too sleepy and tired to do anything with your body, let alone anything constructive. But you’re too ‘buzzy’ to sleep - you have this overwhelming desire from the core of your body to be moving, to be ‘doing’ something. It hurts to open your eyes and they’re burning with tiredness but you can’t keep them closed because you just want to open them again. I fidget, because I can’t keep still. Even though every time I fidget it reminds me that something hurts or aches or something is uncomfortable. I’m never comfortable. No position is quite right. I jiggle my legs and my feet and I flail my arms everywhere even though my muscles burn afterwards. I just have this insatiable desire to be moving and to be doing. It’s like the times I can’t sleep it’s my body’s way of saying “I’m BORED of all this sitting around, DO something” but physically doing it feels impossible so it’s like being in limbo, you don’t know what to do with yourself. It’s almost like a swarm of very irritated bees being stuck in a jar. Or being locked in a broken down car – you can’t call anyone, and you can’t get out and walk. You’re just stuck in it with all that frustration of being stuck somewhere you don’t belong and don’t want to be, in something that isn’t working how it should be, and isn’t getting you where you want to go. In fact I think that’s a damn good analogy *pats self on back* :P
On an average day, the contents of my handbag include: a bottle of water (any physical exertion makes me insanely thirsty), ibuprofen, metaclopramide, a cardigan on a hot day, sunglasses (even on a day that isn’t sunny), an inhaler (even though I’m not asthmatic, but just for the breathing issues I get with exertion)... I feel the need to be prepared for whatever my body decides it’s going to feel that day.
I held a small, newborn baby yesterday for about 15 minutes. Each of my arms felt like they weighed about three stone for the rest of the night.
I’m petrified of being in a situation where I’m overwhelmingly tired and can’t get home and go to bed. Sad, but true. I'm also afraid of feeling really unwell, especially really nauseous, in a social situation where I'm trapped and I can't leave. I’ve been sitting in lectures where I just can’t keep my eyes open and am nodding off but painfully aware of the fact that it’s an inappropriate situation to be doing so. The energy it takes to fight that heavy sleep is just too much. On so many occasions I’ve trundled home after a lecture – I’ve bumbled along like a drunk snail, but one with a rocket up its arse - because I can’t get home quick enough to flop into bed and just let it take my weight and my exhaustion.
I lack motivation to do most things because what’s the point when I’m only going to feel physically shit anyway and then have the mental frustration of that adding to my tiredness and lack of energy.
Mental exertion --> physical consequences. You’d be surprised. The more I think the more tired and achey I get. Uni work is a nasty paradox. I know I have to be doing it, I know I need to completely engage with it and throw myself in, but I know that the deeper I get into it the more I’ll suffer physically, the more tired I’ll be, the longer I’ll feel weaker.
If I overdo it my neck and armpit glands swell up and are sore. That’s not when the symptoms start though, it’s just a sign that I’ve done too much; the symptoms are there all the time.
I saw a status on an ME sufferer’s Facebook today which really made me smile. “Q. Is there any time of day during which you can’t sit an examination? A. Yes. All of it.” – that pretty much sums it up.
I HATE people doing things for me, I really do. I feel uncomfortable about it. I don’t like sympathy. I like to get on with things, I like to be independent, I like to do things myself, I don’t like to feel that I can’t do things, or feel restricted. Jon is amazing and I don’t know what I’d do without his help, but I wish it didn’t come to that and I wish I didn’t have to be dependent on his kindness sometimes.
I passed my driving test a couple of years ago (after taking numerous tests because I couldn’t concentrate and kept making silly mistakes and failing). But since passing I haven’t let myself drive because my concentration is that bad, I don’t trust it. If it’s just myself I’m putting at risk, fine – but when it’s other people it’s not fair. I used to really enjoy driving lessons. I got to drive without worrying too much if I did anything silly because the instructor was there with their own controls and could tell me or remind me what to do. But when I’m on my own and it’s left to my own memory to look at road signs and take in what they mean, to focus and not feel sleepy, to do loads of things all at once... it just doesn’t happen, and I’m in a daze doing things on autopilot which may or may not be correct. That scares me.
M.E. sufferers know the meaning of ‘wasted time’, sitting in bed being bored, wanting to do something constructive but not being able to..
When I leave uni, if I’m not any better than I am now, I’m probably going to have to be on incapacity benefit and be bored at home for god knows how long. I can’t emphasise how much I don’t want that - I didn’t go to uni and work hard on a degree just to sit around on my arse, to work part time for the rest of my life, or to do nothing with it, to feel useless and incompetent and incapacitated. I went there to study what I love and to give myself a chance at a career I enjoy. I LOVE being busy, having stuff to do, being needed, having a routine, having a challenge. But that isn’t going to happen any time soon and I don’t see a choice but to stay at home. I couldn’t work full time – and I could probably work part-time just about, but only with things in place to support the fact that I need a lot of rest-breaks for as long as I need each time, that when I need to sleep I need to sleep and find it very difficult to stay awake, sometimes my nausea is overwhelming, sometimes I can’t face light and noise, sometimes my headaches get really intense, sometimes I seem drunk, I can never concentrate... I could go on, you get the picture. But do you know any part-time job that would happily put up with all those things from an employee? I certainly don’t.
I could write so much more about this, I could write and explain more symptoms, talk about more experiences with it, etc. But it’s already too long, and my brain feels like mush (I’ve written this over two days). So I’m going to leave it there.
What I've learned
Despite all the crappy parts, I have learned a lot and been lucky in many respects. I'm certainly lucky to be as healthy as I am in comparison to a lot of people I know who are more severe than me.
Apart from a shitty life, lol, I have actually gained things from having M.E. such as a bunch of amazing friends and acquaintances. I feel blessed that I've met such wonderful people through this illness.
I've also been fortunate enough to learn a lot of lessons, including: just how precious health is; generally what my body’s telling me; just how much difference it can make to say something nice to someone, and to show a little love to people you don’t even know that well; that we should appreciate the small things; that there are some people who aren't worth my precious time and energy; just how strong the human spirit can be and the human capacity for compassion and bravery (not really my own, I’ve just been struck by other people’s); that ‘achievement’ can be defined in any way and can consist of things taken for granted by those with a good deal of health; that I may have less energy than I used to but I have a hell of a lot more love to give from what I’ve learned and the people I’ve met; an awareness of just how judgemental people can be towards people who have a disability and that there is still an unbelievable amount of stigma attached; that life is too short to care what people think of you too much; that people don’t seem to understand that you can have physical problems without being mentally handicapped; that a supportive community is a wonderful thing; that brain fog can create some hilarious situations; I could go on for much longer.
I think even if and when I’m recovered some day, I’m still going to be involved in M.E. charities. Even on days I’m not feeling too bad, I’m thinking about everyone who is housebound or bedbound and counting myself lucky. Even when I don’t know people with M.E. (though I hope to keep in contact with those I do), I’m still going to do my best to raise money for ME charities, offer support to those who are suffering... because I’ve got to know and love so many sufferers and see how awful it is to go through what they do everyday, and I empathise with a degree of it myself. When you have personal experience of an illness like this, I imagine it’s hard to let go and just move on if and when you get better because you’re thinking of those who are unfortunate enough to still be stuck in the bubble.
I hope that if nothing else, this has helped at least one person understand M.E. a little better, and perhaps refrain from judgement when dealing with anyone that has it because it’s really not as simple as you would think from the stereotypes. That will justify the energy it took me to write this. M.E. maybe one of those illnesses you cringe at when you hear it out loud because of the reputation it’s got - but believe me it doesn’t deserve it, and you’d be surprised just how debilitating it can be.
I hope that this has done justice to the M.E. experience, even if it’s specific only to my own symptoms.
I would also like to take this opportunity to thank people for being so wonderful and understanding about the way I am – particularly Jon, Erin, Zoe, Chris (I accidentally left him out before, but he's been just as awesome as everyone else) and of course all my AYME lovelies. :)
Oh, last point: I'm eligible for a free bus pass. I think when I get it, I'm going to rename myself Doris.
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