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.


lozzzy said...

Hey lovely :)
Sorry to hear you are struggling at the minute. Hopefully things will settle down in a few weeks.

Maybe you could miss the optional things this week and start them next week so you have this week to recover a little bit.


Bethany Mason said...

I'm in the same boat as you. I've just started my third year but am only just managing to go to my two lectures a week at the moment. In my first year I met a lot of people and went out but now I don't see any of them, only my boyfriend. It sucks to know I have to stay at home all day just so I can go to my lecture, come home and collapse. Thank the gods for the internet - I don't know how I'd survive without it as it'd just be so lonely otherwise.

chemilyx said...

Thank you both for your comments :)
Lozzzy... it feels like I'm going to miss out on all the friend-making if I don't go this week, you know when everyone forms their little cliques? Argh! But I will think about it as it seems to be the more reasonable option heh, thank you :) hope you're doing okay at the moment! x

And Bethany I totally agree, everything you wrote is exactly the same as me right down to the boyfriend thing. It is insanely lonely and absolutely not the uni experience everyone always talks about. Sorry to hear you're going through the same x

Creative Chaos Art said...

I might be in a different situation, but I feel your frustration. Every day I have to make the choice of do I wash dishes/cook a dinner/wash clothes, or do I paint? And having to make the choice between what has to be done and what I want to do makes me so resent what has to be done! It's infuriating.

*hugs* I hope you can make some decisions about Wednesday, and enjoy the life drawing if you go, I can't wait to be well enough to do more!