changes in work and medication afoot.

[Loopy Lou]

Well, about two years ago my work procured a letter from my doctors about my epilepsy and what I would or would not be able to do, and I nearly lost my job over it. Luckily I ended up keeping my job, although I got moved around the company four or five times til they could find somewhere to put me where I'm not as much of a "risk". I'm unable to do my job to my full capability which I know drives some of the other staff mad because they have to pick up the slack with regards to supporting the clients. I have risk assessments in place stating that I'm a danger to them and can't be left on my own.

So Anyhoo, that's how things have been ticking along for the last couple of years. The management are getting seriously fed up with arranging my shifts so I'm not lone working so they applied to my doctor for another letter. This one was very detailed and stated specifically stuff which I shouldn't do which includes using hoists, wheelchairs, supporting someone to go swimming, bike riding, on holidays etc and also that I can't do sleep-in duties or waking night shifts, all of which are in my contract. It did however say that there shouldn't be a problem with lone working so long as I'm not doing any of these things and if it wouldn't have an adverse effect on any of my clients if I did have a seizure whilst with them. A big ask. Looks to me like I could be losing my job if they decide that I'm no longer capable of fulfilling my contract. Anyone else been in this situation? Currently I'm waiting for the HR people to make a decision.

Anyhoo in other news I have the neurologist on weds, finally. I've already been told that they don't know where they're going to go next with meds, since the Vimpat turned out to be a total disaster. Currently I'm on 3000mg Keppra and only 100mg Vimpat and still having loads of partials. Got to make a list of what happens and how long it lasts for, to take to my neurologist with me. I'm scared of trying any more new medications, but I also want to have a more normal life, learn to drive, get my work back on track etc.

I hate not knowing what's going to happen...

 

[Nakamova]

Hi Lou, when do you hear from the HR folks? Have they given you a specific date? Is there anything you can do in the meantime to influence their decision, or do you just have to sit tight? Can you get a support letter from any of your managers (the good ones)?

What meds have you tried already -- Ii can't remember.

 

[Loopy Lou]

It would be up to my area manager to do that sort of stuff for me, but she wouldn't. She's a stickler for the rules and it's out of her hands now anyway. So it's up to this person who's never met me or worked with me, just based off this letter from the doctor.

With any luck they'll decide i'm "safe" with perhaps one or two of my clients, since i now work with younger, more able bodied people. I think that two of the people i work with would be comfortable with me supporting them, and the other two... one is in a wheelchair and the other would panic or get really upset if anything happened to me when we're out and about. The guy in the wheelchair sometimes gets upset when i say that i can't go out anywhere with him, for example if he wants to go to the cinema, or even nip to the shop for a paper.

Looks like i'll just have to wait and see. I'm in work tomorrow, with any luck there'll be some news. I mean, i'm still actively looking for and applying for other jobs, but it's pretty tough going and i could do with having this one until i get a new one. In the year or so since i've been looking there's only been about 7 or 8 jobs worth me applying for, and 3 of them were only in the last week!

I've only actually tried 3 meds. Lamictal, which was hopeless, Vimpat, which i'm now only on 100mg of, but it's still really affecting me and i'm expecting to be off it after i go see the neurologist, and i'm on 3000mg of keppra, which seems to affect me the least and works quite well for tcs, though not for my partials. The neuro said that he can't put the keppra up anymore as it's at the maximum dose that i can have.

After trying 3 meds, only one of which i can tolerate, it kind of feels like they're giving up on me already by saying they don't know what to do with me next.

 

[Nakamova]

Well there are still a few meds out there you could try: Tegretol, Lyrica, Depakote. I know that trying new meds can is no-one's idea of fun, but if you're game, they're there for the taking. Assuming your docs are on board.

 

[Loopy Lou]

Well, i'll just have to see what he says tonight. I have to make a list of symptoms which i'm not sure are seizures or not to take with me.

Managers weren't at work yesterday, so no news yet. Got an email yesterday though from a bank i applied for, they're looking through the cvs and applications at the moment, should hear from them before the weekend.

 

[Loopy Lou]

Well, finished making my list of stuff i want to talk about, not as long as i thought it would be. Predictably my mind has gone blank >.<

Heading off in a half hour or so.

 

[Nakamova]

Let us know how it goes!

 

[Loopy Lou]

Oops i just made another thread, i should really have carried on in this one. onder:

 

[Nakamova]

No prob, I see the new thread...