Ramble about illness & things.

[baratron]

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 :)

Comments

[nephrozym.livejournal.com]

by the sound of it, a wheelchair wouldn't actually help all that much except when you had someone to push you- you need an awful lot of stamina and upper body strength to go much more than a short distance in one. if you think you have that, then maybe it's a good idea- get your doctor to refer you to wheelchair services asap, and make sure they give you a light chair with appropriate pressure relief cushioning. chances are they'll try to fob you off with a bog standard 8l or similar- heavy, uncomfortable, seat too high above the wheels so you have to use more effort to propell yourself, etc.

what seems to me to be the best solution is a powered scooter. it has the advantage that you use very little energy getting to your destination, you can legally use roads as well as pavements, kerbs are significantly less problematic, etc. i used one for many years whilst my balance and walking deteriorated. the day before i became chairbound, i could manage maybe 100' on a good day, but that was enough to get around any shop too small to take the scooter in.

in either case you'll need to become adept at spotting kerbcuts, avoiding ankles, putting up with the fact that people will need to walk slowly to stay with you, and a host of other troubles.

it's also likely that once you start using any form of motion augmentation device, you will become increasingly dependant on it. instituting a regular physiotherapy plan to combat this would be a good move.

on a final note, perhaps a rollator/walker would be more suitable at this time. it's basically a 3 wheeled zimmer-like thing that comes up high so you rest your forearms on horizontal pads, hold a pair of grips and walk with it. if you lean your weight down through your arms, brakes are applied. medical loans can usually get this kind of thing far faster than wheelchair services can provide any type of chair- don't expect that to happen inside 6 months; my last two took 18+ months each.

[lizw.livejournal.com]

I will happily come over with food, and may be able to clean if my back doesn't relapse. Finding a date will require negotiating with partners - I'll get back to you.

[redbird]

The wheelchair would make your friends see what you can't avoid knowing. But it's your life--you need to make the decisions.

And yes, if your vision goes funny get to an eye doctor (or, if you can find one, a neuro-ophthalmologist) right away. Optic neuritis usually goes away on its own, but (a) it goes away faster if treated (with steroids) immediately, and (b) that same treatment reduces later MS symptoms. Email me (redbird@livejournal.com works) if you want more info.

[taimatsu]

I will have a think about logistics and things. I'm coming down to London with boyfriend next weekend to wave him happily at parents. They're Wimbledon, and Kingston isn't so far away. We might be able to come and say hello, if you'd like that. I'd certainly like a chance to talk more with you, and I think you and Robert might get on well :) I'll email you at some point soon, and we can discuss whether this will work well or not.

[rivka.livejournal.com]

I'm with redbird. The thing about using a wheelchair is that it would bring your external presentation in line with your internal state - it would take away the ability for people to not know how bad it is. Honestly, that has advantages and disadvantages. Either way, it will probably be quite an adjustment for all concerned.

I know exactly what you mean about "wheelchair as valuable tool" rather than "wheelchair as tragic horribleness." When I used crutches, I used to envy my friends in wheelchairs. But this is the kind of thing that I think it's hard for nondisabled people to understand.

I also agree that a powered scooter is a better idea than a wheelchair. Sounds like you need to minimize the amount of work it takes to move around.

Wheelchair vs scooter vs wheeled walker

[ailbhe]

A hand-powered wheelchair is very hard work, I'm told. More so than a walking frame with wheels and a seat; I've seen some great ones which are basically a very lightweight frame on four wheels, with handles and a seat and a shopping basket. Admittedly I've seen them in Sweden.

You might find a powered wheelchair more useful than a scooter, though I don't know - they seem nippier.

Of course, I have no first-hand experience of any of this.