To think people like me should get some sort of financial help

[Shimmershine819]

I'm at my absolute wits end. Crohns disease for 25 years. I work part time in the NHS (25 hours per week). I cant afford to drop any more hours. I've done the calculations, we'd get no help as a family. We can't survive on DHs wage alone.

No more accommodations can be made for me. I'm so ill. I've just finished a 4 hour shift, 4 short hours and they felt like an eternity. I was in so much pain, nausea, sweating. Trying to put on a brave face.

The multiple treatments I'm on don't seem to be making a jot of difference.

I think of all of those out these like me, with chronic illness, quietly struggling through each day with no help. Not ill enough for PIP, too ill to try and live any kind of normal life. My life is now work and bed. Thank god DC are older now.

Just needed somewhere to offload.

I was like this. Tool unwell to work, not unwell enough to claim benefits.

l got I’ll health retirement ( was a teacher)

100% this. We as a country, for some reason, only consider (non-disabled) kids to be vulnerable and therefore in need of support. They are, but they’re not the only ones.

I'm very sorry you and others with IBD are suffering, @Shimmershine819. Although my contribution is not on the topic of financial support I wanted to strongly encourage those with IBD (as I have myself) to look into the Specific Carbohydrate to significantly improve your health. There is an increasing evidence base for it (i.e. a number of research articles now) and following it for 7 months 10 years ago, significantly and permanently increased my gut health for the better; from being hospitalised yearly I have rarely gotten sick since, and it's been much milder and reversible. I have friends with IBD who had similar experiences. Wishing you all, all the best.

Specific Carbohydrate Diet, I meant to write.

Reapply for PIP - even if that means taking it to appeal and / or tribunal. I'm not suggesting that it will be easy, or quick, but you'd be surprised. Collect as much paper evidence as you can, give yourself the best chance from the get-go.
They will also backdate payments if / when you're successful.

Good luck

This does seem very unfair. Have you explored all avenues for meds? I was v ill with Crohn's for a few years but tried lots of different things and finally found one that worked for me (azathioprine). Friends have had success with Infliximab etc too. I presume as you work for the NHS you have tried everything out there though. You poor thing, I know how unremittingly miserable it is when you feel like this 💐