Posted by Annie on September 04, 2008 at 02:16:21:In Reply to: New to Narcolepsy. posted by 53Buick on August 13, 2008 at 14:51:29:
Buick 53 - I'm sorry it's so hard. So much to deal with, all at once and when you're so tired. I know it's scary. I don't have a family to think of but I've lived with losing my job - both the income and the way I belonged in the world, and that panic of how the hell to make it all work.
I've written about benefits here in case that's what you need to do. I hope there's another way for you. Sorry if I've repeated myself - I'm low on brain power today. I was thinking about the DDA when I read your post too.I don't know much about how employment law works in practice, but your local citizens advice bureau could maybe help with that.
I've been on benefits and then later started up self employed part time, at the same time as claiming benefits.
CAB can help with benefit applications. I know this is not a good income, but a lot of people in the UK with narcolepsy can claim incapacity benefit and some claim disability living allowance, housing benefit and council tax benefit. You can work a bit while on incapacity benefit. If you set up in business but can't draw much of an income from it, you can stay on incapacity benefit for a while and move onto tax credits when you make more money or need to work more hours.
If your doctor and the DVLA say you can't drive, you can get a free bus pass from your local council.If you are getting help from the CAB, make sure they understand how sleepy you get and if you have any problems concentrating for a long time, tell them, because if they see you in a good spell they might underestimate the amount of help needed to deal with the forms. I've had this problem.
If you were going to put in a claim for DLA, it's worth finding someone really experienced to help you fill the form in - the DLA people judge it on specific details and wording so you can be eligible for it but be refused it if you don't know the way they expect you to write your form. If you get turned down for DLA - don't worry they turn down nearly everyone at first. They make nearly everyone appeal and take it to a tribunal. CAB are used to helping people through that.I hope you have a better experience than me but in case you've not had the pleasure before, not every employee of the benefits agency is polite or completely straightforward with clients - I guess there are targets and bonuses to be got. It can take a lot of energy to deal with it. But they aren't all bad, some are fair and kind and respectful.
Some of my info could be out of date, but I think it's still the case that while you are setting up in business, you can get either tax credits, or if you are working less than 16 hours a week, stay on incapacity benefit for is it six months or a year? and earn about £70 or £80 on top of that. There may be rules about how long you have to be on the benefit first. They may not be used to people on incapacity benefit starting their own business - more people do this while being a part time employee. There's the odd small grant you can get for starting work or starting your business through the benefits agency.
There is a UK narcolepsy charity and there's a few forums where lots of UK folk go - I think I can't post contact info for other organisations here. Is that right?
If I can't post addresses - it'd be worth googling about to look for us. There's lots of others who'd maybe have better ideas, and understand.If your G.P. was not supportive enough, or is too overworked to read up on Narcolepsy and really listen to you, then he might not be the best one to support you if the benefits people question how ill and incapacitated you are. If your neurologist is willing I'd ask them to give you a 'to whom it may concern' letter to you to say how the illness affects your abilities and daily life - having that can save you a lot of time and stress.
Some G.P.s can't say much about our situation but the benefits agency doesn't like to ask consultants their opinion because it costs them more money.
It could prevent a lot of stress and nonsense and delays if you have can give them photocopies of a letter from a doctor who understands your situation.Would you feel able to contact your GP, or even the neurologist directly, to say how critical the situation is, and how you need better answers now, so that you can work and support yourself and your family. If it were me, I'd make the argument that the stress of the uncertainty about your work and income and future is making me far more ill.
Have you been seen by a neurologist who is a sleep specialist? Some UK neurologists aren't too well trained in sleep medicine. The UK guidelines are that we should all be seen by sleep specialists. In some PCT areas in England and Wales, the nhs funds Xyrem, which suits some people better than Provigil. It might be worth asking about that.
Don't know if you've the time or energy to try this but some people find if they eat no simple carbs and follow a low GI diet for a while they are a bit less sleepy. The research says it makes about 18% difference, but that's just an average.I really hope you get some good answers fast.
If there's anything you think I could help with looking up, let me know.
All best,
Annie