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.