helen-louise (baratron) wrote,

  • Mood:

Ramble about illness & things.

Having a Very crap day. Went into work today, and it was a big mistake. Halfway down the platform to get onto the train, my leg gave way. But I'd already paid for a ticket, and I thought I'd feel better once I'd eaten. Huh. By the time I got to work, I could hardly walk at all. I was 10 minutes late because it took me 20 minutes to walk a distance that normally takes me 6 or 7, dragging my leg because it had gone numb.

Clearly, I can't handle going in, so I've agreed with my boss to take a month off. Now I have to fill in piles of crappy paperwork, and try to convince the government to give me incapacity benefit, because I'm not eligible for statutory sick pay (and I might not even be eligible for incapacity benefit, depending as when you count the illness as starting). I'll talk to the CAB as people have suggested.

By the time i finished the shift at work, even my speech was slurred, and the side of my face was going numb. I was tempted to go to the hospital, but couldn't be bothered to sit for hours in Casualty on a Friday night with all the drunks being wheeled in, to be glanced at for 5 minutes by some junior doctor who'll think I'm a drug seeking hypochondriac. I don't want any drugs, thank you very much, i just want legs that function properly.

I just hope this is chronic fatigue something, rather than multiple scelrosis (which I can't spell) - with all the numbness and pins and needles I'm getting quite concerned about it. I'm kind of the right age for MS to show up. But charging into Casualty at 10pm on a Friday isn't going to get me seen any quicker than if I just go to my normal doctor - the same long battery of tests will have to be run, and I'd rather it got done somewhere comfortable with people I know. If my vision goes funny or anything like that, I will go to the hospital, but it seems like a complete waste of time if it's not an emergency.

I've been talking about starting to use a wheelchair, and some of my friends' reaction has been "Oh my God - I hope it doesn't get that bad!". And I'm like - it's already that bad. I can't walk reliably round the flat most days, let alone out in the street - and certainly not out in the street by myself, today proved that. I see a wheelchair as a wonderous thing that will let me have some semblance of a life, rather than a terrible thing that I will be stuck in. To be honest, the biggest problem I'd have with using a wheelchair would be other people's reactions. I am just so depressed and unhappy from not being able to go out, like I said, even just down to the bank to pay a bill - never mind whether or not I have the money, I can't get there. I'm completely dependent on Richard or Alexa or other friends to do everything outside the house.

If this is actually ME or chronic fatigue syndrome, then it's probably not a good idea for me to do very much - but I need to be able to do something, even if it's just being wheeled down to look at the flowers in the park. It's really hard to explain. I've been virtually housebound by depression before, and that pissed me off, but at least I didn't want to go out very much. Whereas now, I want to be able to get on with my job and my degree and my normal everyday life, and I can't. I actually would really like to be able to do my job, but it puts me in too much pain to get there: I don't hold a driving license and even if I did, I'm not sure I'd be safe to drive in this uncontrolled condition; and it's just not practical to have someone else drive me in.

Okay, that's enough moaning - no more sympathy, please, just practical suggestions :) Anyone who wants to bring me dinner over the next few weeks is welcome, if you call me to arrange logistics - if you don't have my number email me for it. Don't care who comes, really, just come and keep me company. Oh yeah, I should warn you it's a tip, because I don't want to spend the small amount of energy I do have on cleaning up, but if anyone is particularly bothered by it, you can come and clean for me :)
Tags: disability, hyperventilation

  • Not here any more

    The new Terms of Service for livejournal wants to regulate certain types of political content which have been deemed inappropriate for children by…

  • BiFest

    Apparently there is a BiFest on Saturday 8th April, approximately 10 minutes walk from my house. This is so very close that I really have no excuse…

  • New-to-me doctors never understand me

    Today I experienced the joy which is seeing a doctor who doesn't know me. Apparently my usual GP is on holiday somewhere warm, lucky woman. So I was…

  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded