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

bails

Hi Jenna (I'm over from the 1k challenge)
First of all, big hugs :grouphug: I know EXACTLY how you are feeling, everything you posted is something I feel/have felt over the years, so you are not alone. I understand the 'guilt' you feel about whether you are really entitled to your DLA (lots of us have this) and you most definitely are! Go to your local CAB and ask the Disability Advisor to help you fill out the DLA form, based on your worst days. If you didn't pace/look after yourself, every day would be like this so it is perfectly valid. I'm not sure but Action for ME might have some guidance notes on filling in the form too. I'm about to renew mine as well and I am just as scared; it's 37% of my income and without it things will be awful. I also use mine to see a therapist, which has been the best thing I've ever done to help me come to terms with the loss of life ME/CFS has brought (I'm not too bothered what it's called, I don't want to waste energy getting upset about it :rotfl:).
As for the OT/money worries issue, I guess this is a question only you can really answer. My personal thoughts are that your health must come first, above everything else, so which one would be the greatest help? ie paying off the debt or not working OT? Can I ask how much debt we're talking about (perhaps PM me if you want). Can the debt be frozen and only minimum payments made until you are well enough to pay it off? I used to spend all my time fighting my illness determined to go back to a job I adore (and to a much better financial situation of course) and yet by doing that the very thing I wanted so desperately just got further and further away as I became more ill. Allowing yourself to do what you need to do to get well is the greatest gift you can give yourself, and will ultimately get you out of your situation faster than anything else.
Please PM me if you want to chat, and do take up the suggestion of finding a local support group - however much someone loves you (and my partner is fantastic), it is impossible for them to completely understand (just as it is impossible for us to truly understand a different illness). We have a lot of laughs at my group making fun of our illness because we know everyone there understands just what it's like; laughter really can be a great medicine.
Take care hun xxx

Gemmzie

Jenna, are you getting working tax credits?

Mumstheword

I was diagnosed with ME about 11 years ago, following a long period of seeing different specialists who all decided 'their' bit of me was fine. I eventually got to a specialist in ME who recognised the classic symptoms, and tested me for the Epstein Barr (glandular fever) virus. As he exppected, it was in my system, and probably the cause of the ME.

My employers were awful. They repeated hounded me on the phone toresign, until one day I felt a little better and dug my heels in. I insisted on everything in writing and decided there and then that they had acted so appallingly that I would remain on their books for as long as I possibly could lol! Eventually when they were about to sack me, I did resign, but worded it very carefully to acknowledge that the resignation was at their insistance. Made no difference but I felt better!

After about 9months off sick and lots of attempts to get rid of me, they admitted (accidentally) that I had PHI insurance, which should have paid me about 60% of my wages til retirement date!!!

That lasted maybe a year or two, before an 'independant' doctor (hm, paid for and chosen by the PHI company) reported that I was fit to work.

The IB did the same. I took them to tribunal and was awarded 1 point for 'mental' health issues. In other words, it is all in my mind (if only I'd known that 11 years ago.....sigh!)

All these years on, I am still not fit to go out to work a proper job. However, the interrogations....sorry, helpful doctors assessing me....and the tribunal had a disastrous affect on my health and I took the decision that even though I knew I was entitled to every penny, my health had to come first. That was the last I claimed.

Since then, I've worked part time from home. It's hard to find that kind of work and has taken years to build up for myself, but I've done it.

I just couldnt get it thru to any of them that the only reason I was seeing or speaking to them was because I was on a good day; that if I was on a bad day they wouldnt have even seen me, at their offices or in my home, because I'd have spent the day in bed. All they saw was a normal looking young woman. And that's one of the biggest problems. There's no outward sign of illness, so you are almost 'persuading' people you aren't well!!!

Anyway, I'm happy with my choice. I'm better than I ever was healthwise, and altho I can't live a 'normal' life, I live my life within my own limitations, and it's ok.

And another thing....I certainly wouldnt think twice now about shopping a benefit cheat!!!! If I can't get anything even tho I'm entitled to it....I'm not going to feel guilty stopping a scrounger lol!!!!

maytaurus

hjb123

maytaurus wrote: »

that is great and sooo true:D

seven-day-weekend

maytaurus wrote: »

You get this with depression too.

If you are not in bed with a temperature and coughing and sneezing, or in a wheelchair, people don't think there is anything wrong with you.

I have Restless Legs Syndrome. I don't normally say much about it because it's not life-threatening, but sometimes it is so bad I get NO sleep at all. This is because the feelings in my legs wake me up and I have to get out of bed and stay up until the symptoms improve. Unless you have had this condition it is difficult to appreciate just how much it can impact your life when it is bad. If I was working full-time and my legs were so bad I was getting no sleep, I would HAVE to have a day off in the middle of the week through sheer exhaustion! (RLS is normally symptomless in the daytime so I could sleep then).

The amount of people I have mentioned it to who say 'oh everyone has a sleepless night sometimes', 'why don't you go to bed later' (answer - because it's worse between midnight - 7 am so I go to bed early to try to get some sleep before midnight if I can), 'why don't you have a sleeping tablet' (yeah right. The RLS would still wake me up and I'd be up all night and even more tired than usual!), 'don't sleep in the daytime' (when do you suggest I sleep then?).

I know it's only through ignorance of the condition but it can be most annoying!

It is not always this bad, in fact last night I slept from 10 till 1.30 and then 3.30 to 5.30 which is a very good night for me. I may get another hour between 7-8. Luckily I am early retired so don't have to get up early.

Anyway, thanks for leting me rant. It really was just to say I understand what it is like to have a condition people can't see and don't understand.

GlasweJen

I got a diagnosis of CFS last year but it was a side effect of the heart tablets I was on. They moved me onto new tablets but it took a good 4 months to shake off the "run a marathon" feeling I had every time i did something small.

Horace

There is a chap that I know who has ME - there are days when he is literally exhausted and can barely walk. He has recently set up his own business building websites etc, a benefactor gave him some money to set up so now he has a nice office with 24hr access so that he can work when he chooses. He is feeling a bit more in control too because he sees an occupational therapist each week who gives him exercises to do.

I have every sympathy with anyone who has this condition because I have seen how debilitating it can be.

For those thinking about not renewing their DLA remember you are entitled to it if you were well enough you wouldn't get it. Also remember that you are covered by the Disability Discrimination Act and you can contact Access to Work who will pay for a taxi to get you to work so you don't have to walk. If you have only just started working at a company then if you claim in first 6 weeks then all adaptions are free, after that your employer has to contribute. It is called 'making reasonable adjustment' something that your employer has to do by law.

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

tom9980

Hi Jenna i wanted to respond to your posts earlier but ive been busy, frankly overdone it a bit to be honest and just now have the time and energy to reply. Everything you wrote in your posts is pretty much the same experience as most other M.E sufferers and believe me there is nothing wrong with any of those worries or thoughts you have, pretty much every one of them i have thought myself during the last 12 or so years.

My story is a lot like yours when i was 15 i had barely missed a day of school in my life, our family had always worked hard my dad often worked 60-100 hours a week 7 days a week sometimes when he was busy. I had what we assumed at the time by the Doctor a chest infection in early 1996 and it returned (or maybe never left) a month later i only took a week off sick for this and continued with school in preperation for my exams in 1997. My health wasnt too bad during this period everyone was noticing i was a bit unwell but i was managing to go to school and still had a good attendance record but i was finding it more and more difficult by Christmas 1996 i wasnt feeling that good at all i was having stomach and lower intestinal pain. In jan 1997 i went to the Doctor again and he was thinking virus or exam stress. To be honest i wasnt worried about exams at all but i struggled on and completed my exams and got good results some better than expected despite the fact i found revising hard in some cases i barely did 3 or 4 hours worth for a subject.

During the summer of 1997 i was finally admitted to hospital for a week and i was subjected to a lot of tests mostly to do with the stomach problems i was suffering from nothing was found wrong at all and a few theories of "its all in your head" were begining to surface. My Doctor sent me to see a physciatrist at this point which is fair enough it wasnt a pleasant experience the first guy i saw barely spoke to me and declared after the first session i was "never going to get better" i refused to see him again and was sent to see someone else who actually was human he quickly realised i wasnt making anything up. At this point i was supposed to be going to 6th form with a bunch of my friends from school but after a few weeks the 2 hour travelling and work load was too much and i had a major relapse which ended up with me being pretty much housebound mostly stuck in my room from the age of 17-21. Ive barely seen my friends and have mostly lost touch with them. I only went out to go to doctor or dentist appointments during this period it was a real nightmare time for us as a family. Also at this time my Dad had a bad accident at work and he hasnt worked since its pure willpower keeping him out of a wheelchair. We also moved 10 miles from what was the family home for 80 years and my mum changed jobs. I kept sane by talking to others on the Internet, playing computer games and learning whatever interested me mostly anything to do with computers.

1999 was spent fighting the DWP for benefits while my mum was sorting out my dad's IB claim she was made aware that i was entitled to claim as well we never knew because nobody tell's you do they? i never met or even spoke to that lovely old lady from DIAL but she really knew her stuff and sorted out things for Me, my dad and my grandad who was having care needs. I still use her hand written notes to this day to help me with my forms.

1997 to 2001 i was in and out of hospitals and doctors doing tests trying to figure out what the problem was i think it was 2001 when i was told i had a minor heart problem and the doctor said he thought i had M.E. 2002 and 2003 were not bad years i was begining to figure out how to deal with my illness much better, i learnt what worked and didnt for me and i managed to in sept 2003 start a 2 year college course in IT. I was lucky one of the lecturers had a daughter who had M.E quite badly and everyone was understanding about my issues, its here i met my partner. The last 3 months of my course i just couldnt do anymore i stopped going but managed to complete all my coursework and got a double A award for all my hard work. It was yet another setback but i wasnt anywhere near as bad as before so i took it easy a bit and learnt to drive while doing some courses once a week in the evening at the same college.

In October 2006 i moved 20 miles to a flat with my partner so she could go to University, its perfect for me right by the city center with parking so when i am able i can easily walk a few streets to do a bit of shopping then come home as soon as i feel tired again. I also recently managed to do a year of volunteer work once a week ive stopped that now for awhile because im too ill but i do hope i will be able to work part time sometime in the next few years as we will lose any entitlement to benefits when my partner is working anyway. To be honest this annoys me why give people who have kids they choose to have so much money yet make it so hard for people who are ill/sick.

I hope to claim DLA sometime in the near future i was entitled obviously years ago but couldnt face claiming it and again lately my condition has worsened a great deal so much so ive been pushing my doctor hard to do more for me. I am determined to get the help i feel i deserve if not for my benefit then to open doors for others who suffer. I am finally being refered to a M.E clinic at the moment, they didnt have them when i was first diagnosed and i never went and asked before because frankly i dont trust doctors much after my experiences with them but i feel i need to be formally diagnosed to get DLA.

Not that i expect anything from a clinic that is mostly told to offer theraphies by the NICE NHS guidlines like Graded Exercise theraphy (yes lets force people who get tired after exercise to do too much) and Cognitive Behaviour therapy which really is more for those with depression and other mental health issues. When will they wake up this is a Neurological problem as defined by the world health organisation in 1969!!!!

There actually is a lot of cloak and dagger stuff involved in M.E/CFS its very politically and finacially motivated with Doctors advising the government who also advise Insurance companies none of whom obviously dont want to be paying millions to sufferers. A lot of the problem is ignorance for 20 years this group of doctors have been saying this illness is all in our heads and they advise the Government, NHS and DWP on all of this while ignoring all the other physiological evidence that is now coming out. Most of the research money for M.E is spent not on physiological research but on psychiatric studies. Not that much money is spent anyway recently the government gave about £8million for research most of it isnt going to the right areas its a bit of a scandal. Some of this can be seen in the case of Sophia Mirza who unfortunatley died in 2005 from complications caused by her M.E

Ive rambled enough and its taken me 2 hours to write all of this but there are many of us out there you are not alone.

Jenna

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.

From my experience, not much has changed since the original name - people still judge you and still don't believe you are "really ill". That there are no specific diagnostic criteria is correct (although there are a common set of symptoms) but this is because the condition is diagnosed by exclusion e.g. they test you for everything under the sun first - I had to visit loads of specialists and have loads of blood tests, no fun at all!

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...