Saturday, 15 June 2013

Winning. Sort of. And why PIP fails us

Some of you might remember that earlier in the year, doctors and surgeons gave me little to be optimistic about, bowel wise.

You may also remember I said, "Stuff that" and decided to do my own thing.

I decided I would get painfully out of bed, however few steps I could stagger at first and try to build up some strength, whilst jiggling my sleepy bowels, milkshake like, into some kind of activity. Hopefully.

Yesterday, after a month or so of determined arse-shifting, I managed to walk a few London blocks to my favourite cafe with the help of my stick and teeth so gritted, casual passers-by may have concluded I had rigor mortis. But I made it. Triumphantly, in the celebratory June sunshine.

I decided I would not live a life reliant on opiates, sweating and itching and vomming my way to a miserable world, where my bed was the centre of everything. I actually had to persuade my doctors to let me cut down so drastically!! After all these years of fighting for adequate pain relief, I now have to fight to shun it. Funny how when doctors run out of ideas, they get so much more prescription-happy - must be a guilt thing.

Now, I just sort of put up with the pain mostly, managing it with the oddest diet/not-eating combo, but it seems to work for me.

Finally, they suggested I be fed through a tube. Now roll me over and call me Alfred, but if I can't eat real, yummy, delicious, tempting, appetising food, what on earth would mean nightly drip-drips of gloopy, synthetic amino-acids would stay down?

I decided I would manage my own diet - but it meant I had to put on as much weight myself as they might have managed with the gloop. Bearing in mind that I disappeared entirely if I turned sideways at that point, and my own children couldn't tell if I was lying in bed or not, I had a long way to go.

Well Hoorah and Huzzah! It's working! I've put on nearly half an agonising stone, I can walk a bit, I'm not spending all day every day in bed bombed out of my head, hating everyone and I'm eating whenever I can.

Now here's the point : (I always get to them in the end) I'm not better.

It still CHUFFIN hurts.

I have the unpleasant habit of vomming mid conversation with absolutely no warning at all.

For everything I manage to get in, 73 x as much seems to come back out (**This is crohn's law)

My legs are quite unhappy about the forced labour and often just say "Nope, I don't think so" and I have to sit on a kerb or post box til they stop sulking.

And did I mention it CHUFFIN hurts?

BUT In DLA/PIP terms, my Herculean effort to be better, to live better, to love better could well mean I would be re-classified as not disabled. By trying harder, I make it LESS likely that I get the support I so desperately need! If I get out of bed at all, my local area believe my needs are not "critical". If I walk more than 20 mtrs, trying desperately not to waste away altogether, I may not qualify. If I eat rather than accepting a permanent feeding tube, no matter how much it costs me, I discard the one automatic qualifier those with bowel disease might rely on.

Remember, I'm not any better. I'm in no way cured. My Drs are still convinced there's no hope for me. I'm in no less pain, I am vomiting just as much. I'm as ill, as disabled, as generally screwed as I was before.

But by trying too hard, by being strong and determined, by doing the best for my children, my husband, my Mum and my friends, I can be cast aside.

THAT'S why Personal Independence Payments are a very silly idea and why Disability Living Allowance was more in tune with real illness, real disabilitty.


  1. exactly.
    penalised to struggling on despite everything, but not the money to make struggling on possible. Endless cycle of try hard, get no money. Get defeat, crash and burn, get money. Build up again, lose money.

    What is the point of it all?

  2. We've made a rod for our own backs by being stoical and making light of our problems, but people don't want to hear the truth when they ask how you are

  3. I agree, but we must be careful not to play into the Govt's hands by 'deliberately' misinterpreting the criteria. To take one with which I'm all-too familiar, a claimant should only be considered able to walk more than 20 metres if he or she can do it safely, to an acceptable standard, repeatedly and in a reasonable time period. If he or she cannot do it in a way that fulfills these qualifying adverbs, they are to be considered unable to walk that distance at all.

    But I agree with your basic premise, Sue, that the way the benefit is set up discourages claimants from trying to overcome their difficulties. And anyway, even more to the point, do we trust private sector healthcare professionals to apply the criteria properly? I certainly don't!!

  4. I know you get this a lot, but you are amazing. And so right about all of this. I'm worried about all the people who are now going to be left attempting dangerous everyday tasks like using the shower or the cooker by themselves. It's not just independence or lack of it, it's life and death and yet again that point gets lost by the media and politicians.

  5. THAT'S why Personal Independence Payments are a very silly idea and why Disability Living Allowance was more in tune with real illness, real disability.i agree sue my weight is low at 110lbs and will never go up because of the consent stress by the DWP placed upon me

    i was 200lbs back in 1980 when i retired and their grip on me since then has taken it's toll oh well i only have 9 years to go till my retirement and have said only then will you be free

    so all in all i will have been with the DWP from the 1980 till 2022 42 years

    if i live that long that'll be a miracle and if i did i would deserve a knighthood

  6. Amen. I am trying to work, desperately trying, forcing myself to stay a "productive member of society", working out five times a week, spending a fortune on driving lessons, and fully aware I am utterly screwing myself by doing so. I'll be about 50% financially worse off doing this than if I just gave up. This is just generally WTF.

  7. personal independence payments is patronizing in my case; i'm a full time wheelie- i have no independent movement. i can t into or out bed by myself, i cant get into or out of my wheelie by myself, i cant get onto or off the toilet by myself, and the best bit ? i cant even wipe myself after the effort of trying to toilet! dont start me on get washed/dressed even this has taken near 40 minutes!
    personal independence is a memory from years gone by

  8. I understand completely where you are coming from, Sue. I'm on my third attempt to get DLA or whatever the fekk it's called now. Trying too hard to be 'normal' will probably disqualify me again. The system is brutal, unfair and completely anti-disabled.

  9. The thing is, there are so many unemployed 'able-bodied' people who want to work, that the government doesn't have to make any 'disabled' person even think about working, let alone worry them to death with threats of no money, etc. The government has been tackless, thoughtless, pathetic, unkind and disgraceful in making such an issue of a few people trying to claim disability benefit when they are not disabled. They have made a mountain out of a molehill, whilst ignoring positive, constructive chances to change Great Britain into a better place for us all to live. May God never forgive these nasty politicians responsible for making so many people unhappy.

  10. Yes, PIP fails badly. In my case it seems a stark choice, use my p/chair permanently, or lose my Mobility car. I have been told that nerve damage to my spinal cord means I must walk a little every day or every other day at the least, or I will lose the use of my legs, which don't work properly as it is. But if I do walk, just a bit, I will probably lose my car, which is my only means of independence, the bus stop is just too far away.
    I know the rules say 'repeatedly, reliably, safely' which would help me a lot, but I simply don't trust ATOS to take this into account. My neurologists understands my condition, but would an ATOS physio or a nurse? Maybe not. I decided, if I have to choose (realising that I am lucky to have a choice, which so many don't have) then the car will go, as I don't want to lose what function I have in my legs.
    What a ridiculous situation.
    Buses aren't w/chair friendly around here, and the shops are miles away, I can't imagine life without my car.
    And for anyone who says 'you can appeal', well, I just don't have the necessary energy. Just living takes all my energy.

  11. All ATOS need to do is to apply common sense. you should be allowed to take your clothes off which in many cases would do the trick as by removing your clothes the ATOS assessor will be able to see crystal clear on what you have wrong with you and why you have pain on movement or whatever underweight /overweight their is normally a body impediment to look at

    for those with mental illness a good look through the history of the claimant is all that's needed to determine what help that person needs are

    it's all very simple i cant be the only one that grew up looking after disabled people if could do it as a kid it's about time ATOS stopped playing the devils advocate and telling people there fit for work as all that does is lead them to an early death or is that David Cameron's master plan ?

    If it is then we all know where we stand but if not then just shut up and let the doctors decide on what's best

  12. Equality Act 2010
    Guidance on matters to
    be taken into account in
    determining questions
    relating to the definition
    of disability
    for most of us here we are disabled so you should tell atos to read this document as all is explained

  13. I can't decide whether government disability policy is Catch 22, Kafka, or Catch 22 meets Kafka.

    And then again it might be one of the circles of Hell from Dante's Inferno, Which would probably fit with IDS's tough-love-Christianity...

  14. well done on your achievments but yes we know whot they give with one hand they will take away with the other but its bloody madning that being sick and disabled we are going to get better by their standereds but even like you fighting back leave ones self open to their terms that we are ill and disabled its just so that you get sick and tired of staying in bed you fight to do smoething normal sorry spelling bloody mind gone agin jeff3 keep fighting