Myalgic Encephalopathy (M.E.), DLA & debt

Jenna

Hey guys,

Wow a new board, cool - thanks Martin and the team this is so relevant to my situation right now!

Anyway I wanted to introduce myself and I am hoping that somebody out there will be able to give me some friendly advice - I am just not sure what to do for the best right now

In 2001 (when I was 14) I was diagnosed with Chronic Fatigue Syndrome (CFS) as it was known back then - what a demeaning name, it makes you sound like some sort of slacker who just didn't get enough sleep for a night or two! :mad: Thankfully it has now been changed to the more medically accurate Myalgic Encephalopathy or M.E. which is much easier to pronounce and spell :rotfl:

I was (am? would like to be?) a really active person - at the time I was working at a local stables, riding 2x a week, playing ice hockey, race canoeing. But the M.E. put an end to all that, messed up my GCSEs too - in the end (after much fighting and an O.U. course that I did from home to prove I was actually bright!) I got into college.

Unfortunately the summer before I went to college I ended up in a really bad situation on holiday - a public forum isn't the place for the details of this, but lets just say it was very serious, very traumatic and I am a bloody lucky person!

The M.E. had been improving a good deal before this happened to me, as I had been making an effort (with my Mum's wonderful support :A ) to eat a very healthy diet, take a little exercise (at that time as little as walking 20m would exhaust me!) and get lots of rest.

Basically the condition is caused by various factors in different people but with me it was depletion of the adrenal gland - which produces both adrenaline (fight or flight) and also the basic energy that we all need on a day to day basis.

When it gets depleted (as in the case of severe and chronic stress - which was/is my problem) then the body can't produce the correct amount of energy, and even "simple" things like getting up out of bed become hideous challenges. Worse still, as soon as I got stressed about something (e.g. when I woke up worrying about how college would go), I'd get a massive shot of adrenaline, and then feel "fine" - would rush round like a mad thing, try to do everything at once, and then spend the next day(s)/week(s) lying in bed because I couldn't get up!

So yes this event caused me to be very stressed / on edge all the time (various mental health professionals have told me that I had/have Post Traumatic Stress Disorder or PTSD but I am not so worried about the label, I am just trying to explain the level of tension and fear that I go about my life experiencing every day!). In turn this screwed up the good work that my health regime had done, and after 6 months of college, I crashed and burned. I went back for one month (on and off) in the summer term, and spent 80 or 90% of my second year lying in my bed doing coursework on my laptop.

I have had help with getting to/from college (a taxi which I shared with another girl) which was funded by the college fund I think though not 100% sure. Then when I started to work I applied for and received Access To Work (A2W) which is a subsidised taxi really - a car door to door, but even so, by God it was expensive! But it was necessary for me to be able to continue to work, I would never have made it without that.

Then my job got CRAZY stressful, and it made me ill again, and I had to leave (my doctor signed me off sick for 5 weeks - eek!!) ... I was only on SSP for all that time so I had to take out a 0% BT deal on a CC deal just to pay bills. I was then very stressed and unwell whilst trying to look for a job, panicking about rent/bills etc.

Finally (phew!) I got a job - though only a 3 month rolling contract - and things started to improve. I've been there now for a little over 15 months and although it's not what I want to do long term (I want to run my own business in Adventure Leisure - have done since I was 13 - but gotta have my health back up to speed for that !!!) I can at least tolerate/slightly like my job. The guys I work with are great and it can be flexible too e.g. today I worked from home on my laptop - thankfully as I don't get paid sick at all (as I am a contractor) and I can't afford to lose the money!

OK this post is far too long... I'm gonna post this and start a second one... I'm really sorry to go on I just never ever talk about any of this stuff as no one I know will really understand and they all judge me except my Mum and she has enough on her plate and actually isn't very well herself right now

Jenna

Right yes what I was trying to explain was for the people who don't know what M.E. is (and I know there will be someone telling me I am not "properly disabled" or "just a slacker" etc, well I don't care I've been listening to it for 7 years and all I can say is, you bloody well try living with it!!!! And for any joker who thinks it must be fantastic to lie in bed all day - it's not - it's boring and anti-social and uncomfortable, and just imagine often not being able to see your friends on the weekend because you have to sleep!!):

The symptoms do vary from person to person but my main ones include muscle pain, joint pain, severe headaches (esp. in the morning - feels like I'm hungover despite no alcohol and drunk a pint of water overnight?!), eye ache, insomnia (speaks for itself), hypersomnia (can sleep for 12 - 16 hours a night without an alarm clock), and thinking through "cotton wool" - cannot formulate thoughts into sentences, can't navigate public transport, can't remember what I had for lunch or even if I've had lunch.

It's really stupid in so many ways - e.g. tonight I can't wash my hair because my arms ache so much. And I'm often damned if I do and damned if I don't e.g. exercising makes me feel physically worse but if I don't do it, I don't burn off any stress, so over the longer term (few weeks / months) I actually end up getting sicker.

Anyways I have been getting DLA for the last while, I am on the middle bracket for Care & Mobility I think (it's a while since I last did the forms). I am technically still entitled to A2W but cannot afford it and I now live 10-15 mins walk from my work ... as I say the exercise makes me feel terrible and often worsens my symptoms but I try to do it simply because I know longer term my health will benefit (NB: I don't drive otherwise I would prefer to drive in, of course!).

I was quite frightened by the new ads on the TV about benefit fraud, because for example, somebody could say that because I can walk 10 mins to go to work I am a fraud? Even though I feel awful for it there is no outwards sign so no one would know, and they aren't going to know that I've just spent the weekend lying in bed doing nothing but sleep either are they?! I dunno if that makes sense to anyone out there but basically yeah my symptoms are variable from day to day and in order to work I make sacrifices in my personal life e.g. not doing too much / not going out much if ever etc since I need to rest.

But yes I am terrified of someone leaping to conclusions about me and also the ads made me feel awful about myself as a person since what if I am not entitled to them, I mean it's not like I've lost a limb or something is it

And my DLA is now up for renewal in a few months, early next year in fact. And I do still have symptoms e.g. today I had to work from home whilst lying on the couch and even then I was still in pain from my muscles/joints, but I don't know what counts, and the last time I renewed it a doctor had to come out and examine me and that is terrifying as well

I feel that it would be easier to just not renew it, but I have debts because of my health being so poor (job induced stress caused a relapse in my health) and having to change jobs because of it, and also just now I'm seeing a psychiatrist (paid for with my DLA money because I can't afford it any other way) for the event that caused the supposed "PTSD" or whatever you want to call it but I get awful nightmares/flashbacks etc that certainly doesn't help me with trying to rest and improve my health.

So yes do I give it up and struggle on my own?? Keep it but use it to pay off the illness-related debts?? Or keep going to this psych? Or what?

I am currently working OT to try and over-pay my CC since I'm stressed about it but again I'm between a rock and a hard place. I can't not do the OT because then I won't see my CC balance coming down very fast and will stress about money / credit crunch etc (and my OH is out of work at this second - eek!!), but if I keep doing the OT it could start to affect my health - I really am struggling at the moment - I am just so lost it's untrue!!

Does anyone else out there have debts and struggle to balance health with paying them off?

Any ideas?

Really, really sorry to have gone on like this, once I started I couldn't seem to stop... I just don't know what to do for the best. And I'm panicking about that, which I know is damaging my health, which stresses me, which damages my health ... :eek:

Pretani

My God you just sound like my cousin who was diagnosed with a condition like ME since she was 15. She was an athletic type and suddenly would collapse when taking part in sports, she missed out her exams and hasn't worked since. She's now 34 and fortunately had 3 kids, although she was warned it could be dangerous. She eventually went through surgery on something around her back, could have been the adrenal gland you were talking about and now her condition is much better.

Jenna

I'm glad your cousin is much better and has been able to have 3 kids, that's great

I think maybe she has a very similar condition? Essentially the same as mine but also involving inflammation of the spine? I believe it's called Myalgic Encephalomyelitis (also shortened to M.E., just to confuse us all!) - and yes I have just Google'd the spelling of that :rotfl: I remember my doctor telling me something about the different variations of it or something though I was quite young at the time so I could be wrong.

Have just scanned my last 2 posts and oh my God I rambled didn't I !! :eek: Sorry ... just really upset this evening ... dunno what to do really.

Thanks for the reply it's much appreciated xx

Pretani

Jenna, you shouldn't have to pay for a psychiatrist, as far as I'm aware that should be free. It may be good for you if you ask for day releases where you meet other people with a similar disease.

Jenna

I think it would be free if I went via my GP, but the 2 psych's who work there can only make daytime appointments (and since I work FT I can only make evening ones), and they will only offer 6x appointments at a go... then they will re-assess you and offer more if they think you need it. Of course I don't want to go longer than I need to, but truth be told, I can't handle the pressure of "will they/won't they" renew me - so I just clam up and can't talk to them.

Not sure what you meant by day releases - isn't that prison?! hehe. no seriously do you mean meeting other people with M.E. - I've never heard of this - not sure how it would work?

xx

LittleTinker

I havent read all your post yet but just the beginning bit.

The illness was called M.E years and years ago but had a terrible stigma attached to it through its nickname Yuppie Flu.

People who said they had ME were laughed at left, right and center basically because there was no diagnostic criteria for the illness and it seemed to affect the Young city working types......especially after they had some type of illness such as flu.

It was seen as the illness for Younsters who couldnt be bothered to go to work....the ones who thought they ruled the world but burnt themselves out so quickly.

It more recently changed its name to Chronic Fatigued Syndrome....which is a more descriptive name for the ailment.

The thing is now, so many people are not 'happy' with this name as it does sound like the sufferer has had a few bad nights and its these people who are deciding to call it by its original name because 'it sounds more like a real illness'.

Anyone who remembers the days of ME knows that it really doesnt help you much stating you have ME rather than CFS.

Also, it is known now that many other illnesses do accompany CFS such as fibro, and I wonder if you have ever seen anyone about that possibility?
Also out of interest, how did the diagnosis come about for you?

I hope you dont take my post in any way other than the way it was meant and that is as informative and just to set straight that ME came before CFS.

Not sure how old you are, but I would think quite young. If older, I guess you wouldnt want to 'have' ME because of the hideous stigma

natzini

Hello there!
I suffer from ME. Fibromyalgia and an Underactive Thyroid and really sympathise with you. I hate having these illnesses because of the stigma. I ended up bedbound 3 years ago at the age of 23, but am happy to say that I do work full time now. Not that I don't struggle with that sometimes, but I'll get there. I found a workplace who understands (or tries to!) my condition, and I have changed GP surgeries this year due to issues with my last one. Hopefully I'll now be able to see Professor Davies, NHS or privately. I am slowly paying off the debts which were accrued whilst I was ill.

Just thought I'd let you know that there's someone here with similar problems, so hi!

hilstep2000

I have MS, and chronic fatigue is a part of that. Other people don't understand. If you say you are tired, they say "Oh so am I" But chronic fatigue is different. You can make a cup of tea and feel as if you've run a marathon!
You shouldn't have to pay for treatment if you have a dx, see your GP and demand it.
I'm lucky I have a specialist Nurse who is brilliant. Are you a member of your local ME group? If not, maybe it would help to be. Others with the same condition can often help with things you haven't thought of.
Take care,

hjb123

I too have ME/CFS, I started with it 4 years since, at the time I was working full time but had 6 months off sick before I had to leave because of it

I have a brilliant understanding doctor and am a member of the local me group and groups/websites on the internet for ME sufferers too which are great for help

The thing with ME/CFS is that people only really see you when you are fine and well enough to be out and about and they obviously think theres nothing wrong - they dont see the days when you are house/bed bound and look dreadful:D

Weve recently got a wii fit which has been great for exercise without having to leave the house, even if I dont feel well on a specific day I still do the body test

Im only on IB, I dont get DLA or any other benefits, I still live at home so get some help and support off my parents

Im still not back at work, I was meant to start a new job, a part time one, a couple of months ago but I had a bit of a relapse and wasnt well enough to and am still having to try and get back to a good level of health which I am struggling to at the moment which is very frustrating but Ive been there before and know what to expect etc

robpw2

dont feel bad about claiming dla , your entitled to it. they pay based on your worst days .