Monday, 11 October 2010

Fighting for the ability to do the tiniest things.

So today I'm really feeling... well, ill. I need to write about it as I don't know what else to do with myself.

I'm just starting third year of university - freshers' week has just finished.

Last week I don't remember everything I did, but I know that I went to freshers' fair and signed up to loads of societies (albeit those that involve the least physical exertion) - art, knitting (I'm serious), public speaking, circus, massage, drama, etc.

I knew full well when I was signing up for these things that I wouldn't be able to go to half of them but I was determined to try anyway because that's a lot of what university's about - extra curricular stuff, getting stuck in, meeting new people and since I don't drink and can't really go to clubs etc because of my illness (plus I'm not that kind of person anyway), I really depend on things like societies for my social life and to meet people who share my interests/ outlook on life.

On Saturday, I went to auditions as part of the drama society. The auditions were around 5 hours long and by the end of it I had completely lost my voice and really suffered that evening in terms of headaches, tiredness, aching, feeling sick etc. Nevertheless, the first circus soc meeting was the next day and I really wanted to go - I've always wanted to be able to do fun stuff like juggle, do poi, just all those things that are awesome to be able to say you can do. So, I went to circus soc. When I started doing the first activity (poi) I was shocked at how quickly I needed water - probably within the first 30 seconds I was desperate for a drink. I sucked at poi, I really did, I kept hitting myself with them and wrapping them around myself and all sorts - I really was atrocious. Anyway, since I sucked so much at poi I then moved on to juggling. Again, I was really shocked (and disappointed) at how physically knackering it was - I needed water so so badly after doing the tiniest things and within about 5 minutes I was completely drenched in sweat and shaking from my muscles being so weak and over-worked. Just from juggling. Of course, being a complete novice, I kept dropping the balls so had to keep bending over to pick them up and obviously juggling involves your arms so they were working hard too but really, normal people don't struggle to juggle (rhyme not intended :P). I had got to circus soc at 4, and it finished at 5. I'd only been there for an hour but when it finally finished I felt like I'd been there a lifetime.

I struggled to walk back (just like I'd struggled to walk there). I was shaking, dizzy and staggering... I was aching like crazy too. Home being a student house involves getting up 4 flights of stairs which I seriously struggled with too.

In the evening Jon massaged my legs as they were so sore but it didn't really help (although it was very nice!). Today I woke up in agony everywhere... my muscles were just so so tender and stiff and it felt like I'd pulled every muscle in my body.

Despite this, I had to go into university today to make an appointment to talk about transferring from one module to another, and I had a two-hour seminar. I initially panicked about how I was going to walk into university... it's roughly a 10 minute walk but I could have cried at the thought of it. I coped how I usually cope - I just did it anyway and tried to block out the pain, although when I was sitting in my seminar even then I could feel it every time I moved an inch. I wanted to nip into Sainsbury's on the way home to pick a few bits up, so being the stubborn git I am, I went and did so despite the pain and tiredness and dizziness. I really shouldn't have, but I did.

When I got home I was exhausted. I made myself some food anyway as I hadn't eaten a lot, ate it while faffing around on the computer and then went to lie down. I woke up about an hour ago and everything was spinning like mad and I couldn't walk in a straight line when I tried to get out of bed. I'm feeling sick from the spinning. I'm not going to be able to go downstairs and get myself dinner because I really feel too ill.

I'm also panicking about Wednesday. It's Monday evening now, and luckily I don't have anything to do/ to go into university for tomorrow, so maybe I can rest a bit, but Wednesday is absolutely packed.

At 9am I have a counselling session. At 10am I have a two-hour seminar. Straight after that at 12pm I have an hour long lecture. From 2-4pm I have a life drawing class with the art society. At 4pm I have a physio appt, and from 6pm onwards there is an art social. I physically can't go to all of those things but I hate not going to things, I hate missing out on stuff.

If I was well, everyday would be like Wednesday. I would be in the library studying, attending all my lectures and trying my best to do well with my course to my full ability, and going to society-related things all the time.

But because of M.E/ fibro I'm having to closely monitor what I'm doing and decide whether I can even cope with a day of that, and try and prioritise certain things because I'm not going to be able to do them all. It's so frustrating for a person who is naturally inclined to get involved with everything. I don't like missing out on things. I want to take the opportunities available to me while I'm at university but with my body being the way it is I just can't, and it's so annoying.

I need to go to counselling realistically. I need to go to be able to talk about what I'm talking about here, to go over the frustration and various other things. I need to go to the seminar afterwards because it's the unit I'd like to transfer to (even though I can't put myself down for it until Thursday) - and if I am able to transfer to it I don't want to have missed the first seminar. I need to go to the lecture afterwards since it's compulsory and important to find out what they're going to say. Clearly the art thing is optional but I NEED to meet new people, I really do... this is a prime opportunity to meet people who I get on with. I'll have to leave that early to get to physio, and I can't cancel physio because the appointments are hard to get. The art social is again optional but it's a chance to meet and speak to people who I may actually get on with and it's not like it's clubbing or something that I really would struggle with, it's just a pub thing so it could be really good. I want to go for my own satisfaction. I hate how I am having to consider not doing the things that I want to because I use up my very little energy doing the very basic things. If we think about activities in terms of spoons (for more info on the "spoons" concept go to, let's say I have about 10 spoons of energy a day. Wednesday is the equivalent of about 50-60 spoons for me with all the stuff I would do if I did all of it. Obviously I don't have 50 spoons to work with, I only have 10. On an average day, even a shower uses up about 3 spoons. Walking to and from university often uses up about 3-4. Getting changed, depending on how much pain I am in, can use up about 2. I know this isn't a particularly accurate way of measuring but you get my point. I'm always in spoon-debt, and even the smallest things use up a significant proportion of my daily energy. The bigger spoon-debt I'm in, the more I'll suffer the next day and will start off with even less spoons than normal. You get the idea.

ARGH the frustration and restriction is just getting to me so much right now, when I want to be involved in so many things and feel 'well' and just be normal. I can't explain just how isolating it is and how angry it can make you feel. And compared to a lot of M.E./ fibro sufferers I'm lucky - at least I can just about get to university and do some things - a lot of people can't even do that. It makes you realise just how much you took for granted before. Maybe I'm taking for granted the fact that I can still walk a little bit and I can just about study. But I'm still living a ridiculously-far-from-normal existence and I hate it. I wish more people understood exactly what life is like when you have this illness.

Monday, 4 October 2010

Physio appointment numero uno

Okay, so I had my first physio appointment today. I feel the need to start off by saying that for once, I had a positive experience with the NHS! YAY!!
The physio was absolutely lovely. Sods law, she's on maternity leave as of the end of this week so my next appointment will be with someone different, but I've been assured by today's physio and by the receptionist (whose back he mended :P) that he's just as good.

Today's physio was young and very friendly and smiley. I'm so gutted I don't get to have her again! She was dressed like my P.E. teachers used to though... I guess that's what you would expect... but it un-nerved me a little. I hated P.E. teachers.

So, first of all the appointment consisted of having a chat and going over my symptoms. I'd been referred on the basis of having hypermobility which the physio confirmed, although I felt the need to point out I'm not really sure if fibromyalgia or ME are on those notes but they're problems as well - she said that the fibro was written on the rheumatologist's referral sheets but that ME wasn't... I presume the rheum saw them as the same thing. Hmmm. Anyway, so we had a chat about my symptoms and then she went through a checklist asking things like "do you have problems with X and Y?" and when I said yes, which was after explaining in detail my other symptoms, her reaction was "ohhh :( you poor thing!" which was very sweet... she was just as amused as me at how many things are going wrong with my body haha.

Oh, also she was shading in a diagram of the front of the body and one of the back in the areas I said I had problems with... I was silently amused by the fact that in the end, both diagrams were basically entirely coloured in hah :D

She asked me to rate my pain at its best and at its worst (0 being no pain and 10 being intense pain). I think the problem with that is that it's all relative and it's hard to compare pain at one time to another because you don't have much perspective. I said that I'd estimate that at best, it's a 2 and at its worst a 6/7 - I'm lucky that there isn't really any intense pain, it's more of a dull ache which is annoying because it's uncomfortable/ unpleasant, but not because it's intense or causing me distress.

Anyway, after that she tested whether my nerves were working by getting me to push certain parts of my body against her hands (hah that sounds inappropriate!) i.e. my head, my feet, that kind of thing. It was really funny though, purely because my muscles were so, so shuddery and trembly... she was shocked at how tired they were. After doing all of that she concluded that while the power is behind the muscles (i.e. the nerves from my brain to my muscles are working correctly), they're just unbelievably tired and need a lot of strengthening (showed by the violent shaking).
She got me to to squats (she ended up having to hold on to me as I kept almost falling over), and lie on the bed (if you can call it that) and do certain things like bend my knees and move one to the side while keeping one still. That failed miserably :P both were shaking like mad and I found it really difficult to control the trembling and the movement of my legs, at which she commented "ohh you're even struggling to do this!" in a "oh gosh, I didn't realise you would be this weak when I first saw you" kind of way. It wasn't in a horrible way, I think she was just surprised/ felt sorry for my complete and utter lack of strength hahah. She established that during the knee thing, even my core muscles were shaking (i.e. stomach muscles behind the abs) and said that it's worth starting at those muscles and doing basic strengthening exercises to hopefully give those muscles a bit of control and stability thus helping my limbs in the same way. I don't know how long it'll take to notice a difference with that though - the problem is also remembering to do the exercises, I'm so scatty that knowing me it'll just completely slip my mind. I might have to write a big note to myself on the wall saying "REMEMBER PHYSIO EXERCISES" which might look a bit strange (and pathetic) to any visitors but oh well!

Also, I had a doctor's appt after the physio. Convenient to get them out of the way on the same day, actually. I spoke to my doctor about my problems sleeping at night and after a lengthy chat about the possible side effects of the amitryptiline, I agreed to try it. I think the side effects she was worried about were the possibility of thermo-disregulation (I think that's what it was) as it can make you quite unwell apparently, and other than that there was just the possibility of being anxious/ jittery/ on edge. I don't like feeling like that so I hope that doesn't happen. Anyway, it's generally risky because I'm already on an anti-depressant, so adding another one in (amitryptiline is a mild anti-depressant which has sedative effects) can cause problems. I think the other risk was serotonin syndrome which I also hope I don't get :| but yes, overall my doctors appointment was also good. My doctor is always lovely, but I don't always come out with amazing outcomes purely because a lot of the time there isn't much she can do about most of the symptoms. Anyway, it's nice to be finally trying something for the sleep because it's such a pain in the arse. I hope the amitryptiline helps!

That's all for now, I really can't think of anything interesting to say.

Will hopefully post again soon :)