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

LittleTinker

Jenna wrote: »

Wow so many replies, thankyou guys, I'm touched there are people out there who not only understand but have bothered to reply to me :A xx I'm going to reply to each in turn as there are so many different points and stories

LittleTinker ~ It was called M.E. before, but this abbreviation referred to Myalgic Encephalomyelitis, which also involved inflammation of the spine. When they discovered that not everyone actually had this symptom, they decided it was medically incorrect, so changed it to CFS. The new term of M.E. that I am referring to stands for Myalgic Encephalopathy which is medically descriptive of the condition.

The condition can be brought on after having a severe illness such as flu (and I am referring to real flu, e.g. the sort that has you in bed for 2-3 weeks, not the sort that lots of people get for 1-2 days :rotfl: !)... personally I had Spanish Flu and was in bed for a month, took closer to 2 months before I felt normal again. But I don't believe this was what triggered the M.E. - it was at least 6 months prior to my diagnosis - maybe it didn't help, I guess, but according to my doctor the cause of my condition was around chronic stress and adrenal fatigue.

It's not so much that I'm not "happy" with the name, but that a panel of experts have decided this is the best name to use (if you want more details go to www.afairname.org) as it is the best fit for patients and is respectful of the condition.

I haven't specifically asked my GP whether another illness accompanies the M.E. but given the number of tests I had at the time, I am sure they would have found any other issues if they existed! As to how did the diagnosis come about - not sure what you mean really? - I was diagnosed by my GP after seeing various specialists etc.

And just one other point ... I am sure you didn't mean the statement below to sound offensive, so I am not going to take it as such...

"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"

But all I can say is:

1. My age is quite immaterial. There is no less stigma attached to the condition today than 20 years ago.

2. I don't want to have M.E., it is a horrible condition which has messed up and is messing up my life and is stopping me doing so many things, and I am puzzled as to what part of my post implies anything other than this...

Oh Dear.....i do get the sense that I have upset you somewhat and that certainly was not my intention.

Your explaination to me of the difference between ME itis and ME opathy is pedantic to say the least. They are both referring to the same thing.

Also, you seem a little confused as to the meaning of the sentence you highlighted.....notice how I wrote the word 'have'?

Nobody wants to 'have' this illness but for those who do it seems that today, 2008, it is much better to 'have' CFS than it is to 'have' ME especially if they are over 40 simply because of the terrible stigmas attached to ME.

I am sorry I didnt explain that well enough for you to understand first time round.

As for your post implying that CFS messes up your life, no, I didnt get that, sorry. You seem to be managing so well holding down a full time job and taking on other activities on top. Good for you.

However, its the people who cannot work, cannot drive, cannot go out of their homes, cannot even get out of bed and who cannot form normal relationships due to the many social restrictions that I feel the most for. Now THEY are the ones who have really got "messed up" lives.

sleepymy

Oh gawd, it looks like the disability board won't even be immune from the 'not disabled enough' nonsense :rolleyes:

LittleTinker

sleepymy wrote: »

Oh gawd, it looks like the disability board won't even be immune from the 'not disabled enough' nonsense :rolleyes:

The only nonesense is from comments like this.

There is no need for you to say such a thing as I didnt mean 'not disabled enough' at all!

I know perfectly well how this can affect people and that good days can last long enough for a full time job but often the jobs dont last long.

I was saying that the ones who cannot even do that must have a really hard time of it because it cuts them off a whole lot more.

Perhaps you ought to consider that disabilities CAN also affect how people word and express things...(ask anyone with Fibro or Dyslexia, eg, if they have ever been misunderstood or 'taken the wrong way')

Your comment on its own is nothing more than a slur.

sleepymy

I know very well how disabilities can affect how people word & express things, I've had severe to moderate ME for over a decade along with chronic migraine (including classic). I've also done volunteer work for most of that time & was training to work with disabled youth when I had to give up my degree due to my illness.

I also know when someone is spoiling for a fight (first with Jenna, now with me) so I won't be entertaining you. I'm sorry you feel the need to post with such criticism and hostility over something which is really only a matter of personal opinion.

Ames

I haven't read all your thread (yet) because I just wanted to jump in and post. You sound so similar to me - I was diagnosed with ME when I was 14 (twelve years ago now), and I have mental health problems (different doctors give different names, I was happiest with bipolar, but the current psychiatrist says it's not). And as for other people's attitudes, they just don't get it. At all. I can't use my stick around dad because he gets embarrassed, as far as he's concerned ME doesn't exist and neither do mental health problems. And it doesn't help that my sister had ME and recovered and therefore I can't still be ill with it.

Because of the combination of things I can't work, never have been able to.

I've finally (after 5 years of asking) been referred to a psychologist, I can't wait, hopefully things will start to improve. Last time I was referred they said they wouldn't see me because I had to go to the ME clinic first, but the ME clinic wouldn't see me till I'd seen a psychologist..... Hopefully it wont be like that this time!

I also get DLA - higher rates for both, last time it was awarded for 5 years, I was stunned, but it's been great not having to worry about that.

I'm also in debt. Long story why, a lot of it down to the mental health problems, and a lot down to the rubbish benefits system that took a year to sort out my housing benefit claim. It got so bad that CAB told me to go bankrupt, but I've managed to avoid that.

It's interesting what you say about the names, when I was diagnosed it was always ME and now the doctors always put CFS, so I thought it had changed that way. I agree about the name though, people always think that it means just being a bit tired. As you know it's about so much more than that.

You were lucky with college. I tried to go to uni a couple of years ago but they just refused to make reasonable adjustments. I'm with the OU now and they've been great, although I missed the exam last week because I had a cold. That was one of the problems I had at uni, I don't think they understood how a cold could mean I couldn't make it in to seminars. But for me (I also have immunological problems) a cold doesn't mean curled up on the sofa with a lemsip, it means bed ridden.

Anyway I've waffled enough, it was just so great to see someone else in the same position (well that sounds awful but I hope you know what I mean).

Right, off to read the rest of the thread now.

Ames

Right, now I've read it all..

I like the wii fit idea, I thought about getting one (if I can every afford it) but wasn't sure if it'd be too much for me. I might start saving for one though.

I agree about the stigma then and now. When I was first dx'd everyone thought it was just being lazy, or in some cases 'trendy' (?). Now there's a lot more understanding. I prefer the term ME just because it sounds more medical, and cfs can be misinterpreted so easily. It's the same reason I say I'm disabled rather than ill, if I say I'm ill people think it's something that's not very serious and it'll go away in a few weeks.

sleepymy

Ames wrote: »

I agree about the stigma then and now. When I was first dx'd everyone thought it was just being lazy, or in some cases 'trendy' (?). Now there's a lot more understanding. I prefer the term ME just because it sounds more medical, and cfs can be misinterpreted so easily. It's the same reason I say I'm disabled rather than ill, if I say I'm ill people think it's something that's not very serious and it'll go away in a few weeks.

I think one of the problems with the term CFS is that many people get diagnosed with the state of chronic fatigue which really translates into long term fatigue at any level. People can confuse this with CFS and not realise that it's a whole different animal with so may other unrelenting and serious factors.

There's a huge difference between someone with low energy levels and someone like me who has to spend most of the day with my feet propped up or lying flat because my body doesn't have enough energy to pump the blood through my heart properly. It's one of the reasons why I (and so many others in the ME communities) prefer to use the title of ME or ME/CFS.

zzzLazyDaisy

I agree about the stigma - when I was first dx'd with FMS, by my rheumatologist, my GP said that she had felt for a while that I had ME tendencies, but referred me to a rheumatologist because she did not want ME on my medical records as there were doctors in the practice who were less than sympathetic to a DX of ME, wheras they accepted FMS as a 'genuine illness'

Fortunately for me (in a strange way) I have other long term chronic illnesses, so I tend not to be sidelined as easly as some PWME.

Mind you, thinking about it, that could also have something to do with when medical professionals ask me what I did for a living before I had to give up work. When I tell them I was a solicitor, their demeanor invariably changes noticably. Strange that :rolleyes:

bails

Have only skim read recent posts (will catch up properly soon) but just to say, definitely look into Working Tax Credit. You would be assessed as part of a couple as you live with your OH and one of you needs to be 25 or older(I think)? I've just filled in my form as my OH just turned 25 so I can help you with that if you like? It's worth looking into and even if you're not eligible right now, it's definitely something to plan in for the future.
Try this link to see if you're eligible at the mo.
Take care hun, will empty my PM box so you can message me if you want xx

chunky79

Jenna wrote: »

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

Uhm very interesting.

I have mentioned many times to my BIL that he may have ME. He also had a pituitary tumor 25 years ago resulting in the gland being removed. i wonder if it is an adrenaline issue with him i looke dat the ME site and foudn i could tick almost every box but as he has suffered fromt eh tumor alot of the doctors are reluctant and just blame that but that was over 25 years ago and surely its not just come about. he has suffered like this for about 8 years.

Does Anyone know a good doctor they can recommend?