Sunday 24 October 2010

Share your story.

In the two weeks since I set up my blog, it has become apparent that there is an enormous sector of society who are frightened, indignant and angry, just like me. Some estimates say that 1 in 10 people live with a chronic illness or disability, others put the figure closer to one in three. Either way, millions and millions of UK citizens live daily with pain or suffering and many, many of them do not claim any benefits at all. Those that do are totally reliant on them to get by.

For years, sometimes decades, we have fought with every ounce of our strength just to survive. We've often faced ignorance and abuse, we've known desperation most of society will never know, but somehow, we've found the strength to carry on.

Some of us have found effective treatments, others have simply searched in vain, but we've all found ways to cope, or we wouldn't be reading this today.

Today, I'm asking everyone who lives with an illness or dsability to share their story. 

I know it's hard, I know it can be embarrassing, but testimonials are a very powerful way of really explaining HOW incapacity benefit, ESA and DLA improve our quality of life, why we rely on them and why we couldn't do without them.

Similarly, those who DO manage to work have an important story to tell as it helps to show this government that by no means everyone with an illness or disability is a "scrounger".

I already have a few, but we need hundreds and then we need thousands. If we present them to Mr Osborne, it might just open his eyes and show him why his reforms are callous, thoughtless and cruel.

Please do this. Stand together, Fight together and Be Heard!


  1. Blog is up

    Forum built


    Please share far and wide. We need stories (and I need all the admin, PR & tech support I can get!)

    Thank you, BendyGirl
    "You Cut. We Bleed"

  2. Hello!
    I'm Rhiannon. I'm a student nurse, but struggling with it due to my (currently undiagnosed) health problems.
    I have been suffering with joint pain for a year and a half, though originally it was just in my hips. Gradually the pain increased, and paracetamol just wasn't cutting it. I started taking diclofenac (voltarol) and was put on physio waiting list. As the pain worsened I began taking 8/500 co-codamol as well as the diclofenac.
    I had 2 months of physiotherapy at the beginning of this year, which literally changed my life. A month later as a I started another placement (13 hour shifts, barely stopping etc.) my life changed straight back, overnight. The pain also spread, so it was in pretty much all of my joints, not just my hips.
    I now get pain in my hips, knees, ankles, back, neck, wrists and sometimes in my elbows.
    I also began losing weight, noticing mucus in my stools and feeling sick/abdominal pain a lot. I've also had a temp of 38 for about 4.5 months. After seeing my GP I was referred to a gastroenterologist who queried Crohn's. One very painful endoscopy later Crohn's and ulcerative colitis were ruled out. More blood tests (standard ones - FBCs, Us&Es, LFTs etc) have come back normal and so now I'm waiting to see the gastroenterologist again.
    My health problems make work really difficult - I'm just so exhausted all the time, and I was put on codeine phos. as pain was too much. People who don't live with a long term condition don't understand. People don't understand the pain, and I get funny looks due to the amount of pain killers I take daily.
    I liked your post talking about pain scores. Mine has completely changed since living with the long term joint pain!
    If my problems get worse I think I would be unable to work full time, and it worries me to think that I might be thought of as a scrounger!
    I'm glad you found a sympathetic GP who gave you some decent analgesia!

  3. I know this is a bit late but I only found this blog today!

    I've never worked. I've had M.E since I was 11 and the last few years whilst my M.E has improved immesnley 9though I am still not 100%) I have developed 'moderate to severe' depression. The last 4 years I have been at uni doing a degree I never thought I'd do as I was refused a statement for special educational needs as I was 'too ill' and as a result was inelligible for support after I turned 16 and considering I was only well enough to do 2 GCSES in year 11 I was left stranded. I did some GCSES an AS level and an access course at college over a few years at evening classes.
    I am currently on incapacity which i was able to claim whilst studying as I was only in uni for 8 hours a week. To those who assume that as I am capable of getting a degre I can work I'd like to point out a few things. I was only in 8 hours a week contact time, I missed many lectures and had to catch up. I relied on my parents to help me take back heavy books to the library. I would come home from an hour or two of uni and go to bed. had to repeat a year as my depression worsened and I could not cope with exams. Library and revision etc could be done at my own pace at whatever time I wanted, I was able to access many ebooks and journals at home so could study without wasting the energy to go into the library, I often had library fines on short loan books as I couldn't manage to return them on time.
    In short in now way was my degree comparable to a 9-5 job, and belive me it was a struggle. I'm still not at my fittest now after suffering a mini burnout and resurgence of depression after finishing.
    My conditions fluctuate wildly, for every time someone may see me looking 'fine' there are 10 times I am at home too tired or depressed to go out. I live at home, I get my meals cooked for me and I don't have to do housework. When I lived in a hosuehsare and on my own I'd often end up eating horribly bad microwave food or takeaways as I didn't have the energy to cook and I'd still get help with shopping etc from my Mum who lived nearby.

  4. second half of comment as I went on too long!
    I am not a scorunger, i desperately want to do a postgraduate course but unless i get funding I canno afford it. I am trying to earn some money with freelance work writing and doing grpahic design but so far no luck, and I don't have the energy to do enough of it full time to push me over the incapcity hours/money earnt anyway. I wish I could but I know my illness after so long (i'm 26 now and is topped counting how long I'd been ill at 21 after 10 years... so I just say 'a long time' now.)
    If i push myself too much I am in great danger of relapsing, I volunteered half days at an archaeological dig as part of my course requirements and I was left utterly wiped out, I had to schdule in a 2 week break between the weeks I worked to recover. So whilst i could technically 'manage' there is no way I could do it full time. I occasionally volunteer at a musuem, based in an office sitting down all day and I am utterly wiped out after a not quite full day a week.
    I really fear that becuase my disabilities are invisible and I look fine and that yes sometimes I can walk fine, or turn on a tap or whatever little tick box tasks they have that I will be declared fit to work. yet what job would let me rest in the day if I needed to, would let me take days of at short notice because I know I just can't cope when I wake up in the morning? Why should I seriously risk my physical and mental health pushing my body and mind the the limit when I know the likely consesquences are dire, ie bedbound and suicidal.
    In short, I know my illness and my capabilities more than some assesor with a form and if I am declared fit to work and put on Job seekers I know I cannot possibly bet fit for work 40 hours a week. If my benefits are cut (and I'm only able to surive as I live at home, no way I could afford rent now , I do pay keep to my parents so I don't totally scrouge!) I will have to surive on the generousity and kindness of my parents and what little I can earn doing part time work (not that there are any part time jobs going round here I stand a chance of getting, the massive gaps in my C.V and no previous work at the age of 26 really don't put me ahead of the game, espcially when I'd have to admit at some point that I have 'mental health issues', I've been rejected from two jobs I could have done becuase of 'lack of experience'). My parents are both retired and aren't exaclty rolling in it!
    Sorry this is a bit of a long , epic rant but it's a subject close to my heart and I am so utterly angry about it all. Ironically I missed a big demo against the cuts here as I was too ill...

  5. The comments above really touched me.

    I have M.E. too but I'm not nearly as bad as described and I'm recovering. I've been like this since 2006.
    I am often tired and don't have much energy. But with the little strength I've got I'm going to fight to ensure that disabled people are looked after - nobody should have to suffer the fear of having their income cut off when they're this ill. The government should be ashamed.

  6. I am another with ME, which I have had since a bout of flu over Christmas '95. In the summer of '96 I thought I was better, and got a job. Then I relapsed and had to give it up, and got Fibromyalgia Syndrome to add in to the mix. Again I thought I'd recovered in '97, and again went back to work, part-time. I lasted 18 months of 'pushing through' until I collapsed and had to give up that job. 9 months later I also had to give up the part-time (1 afternoon a week) course I had been doing, so I'd be able to earn 'proper money' having accepted I could never return to my original career as a nursery nurse. I haven't worked since. I have been in pain since. I have been tried on almost every pain killer there is, found myself unable to take many of them - NSAID's gave me stomach ulcer symptoms, which would wake me screaming in the night (inside at least, I never complain out loud), codeine gave me excruciatingly painful trapped wind (which would also have me 'silent screaming' in the middle of the night), Fentanyl patches made me sick, because I'd overheat in the night and effectively overdose on the drug (they are heat activated). I ended up on sublingual buprenorphine, which made me constipated, so I had to take lactulose to counteract that, and nauseous, so I had another drug for that.
    One day I sat back and took stock. I was taking a painkiller that reduced my pain score by one or two points, but was having to take two more drugs to counteract the effect. Was it really worth it? I decided not. So I cut out the pain relief. Since that day I have had pain constantly, in my back and my hip, and any other joints that get used more than a little that day. Mostly I don't do much. I lie on my sofa for most of the day, because that hurts least. But I don't want to become deconditioned, so I walk to my neighbour's each day for a cuppa and a chat. Once a fortnight I might drive my motability car to the high street, park as close as possible to the shop I need to visit, using my blue badge, and go into one or two shops. If the shops are too far apart I have to move the car to get from one to the other. It's a rare day I can manage to walk the up to 50 yards between. Once a month I drive to another town 20 minutes away to meet up with some friends for a cuppa. I walk maybe 10 yards from the car to the coffee shop. After each time I've been out, to the shops, the coffee shop, to a medical appointment, I get home and collapse on my sofa for the rest of the day, too exhausted to do anything else.
    No-one sees the effect any activity has on me. While I am out I look fine, I seem to walk fine. People don't see the pain I feel. I can't use a walking stick because it makes my shoulders and wrists hurt, so I have to walk unaided. I can't use a wheelchair, because I can't get it in and out of my car, or push myself about. So I have to walk. Yet I get glared at for having a blue badge, because I don't look disabled. This is just one problem with having a hidden disability.

  7. Thanks so much Tree Hugger.
    You explain very well how inadequate pain relief can be. I'll be writing much more about it! Thanks for sharing your story.
    Do you mind if I share it with another site, Broken of Britain? They are collecting all these stories on that site?