Anyone else absolutely done with their disability?

[Yorshiregass32]

25 years of cronhs disease. On every med available to me and I'm sitting in work in pain, nauseous and bleeding when I go to the loo. I'm so thoroughly fed up of it. Too ill to work, not ill enough for benefits. It's fucking sucks.

Kind of. Mine is much milder. But everything is harder than it should be. Pisses me off. All the planning, pacing, bollocks.

It's shit isn't it. I've missed out on so much living. I'm just getting through each day, have been for the last 18 months and I feel likeni have to fake being well in work as my colleagues wouldn't understand and I dont want to bring them down and for them to get fed up of me. It's just a shit shit existence.

Have you investigated the stress element? So many conditions are worse when you are stressed, and so many conditions make you stressed!

Yeh, this latest flare started when I was the least stressed I'd been in a long time. I've never found a correlation.

Have you been offered Surrey OP? For some people having a stoma bag is life changing. Hand hold from me, I don't have chrons but know what a horrible disease it is.

I'm autistic (recently diagnosed.in my mid 30s). I struggle with being autistic, but am pleased to know why and have a word to explain all the feelings and difficulties I face.

I don't know if I would take it away. I can't really imagine not being autistic.

Surgery not Surrey!

I have MS and I dread hot weather as it tends to trigger a flare up.

Not yet but I think that'll be the next step as these meds clearly aren't working.

I'm pleased you've found some positives.

I feel for you OP. I was recently diagnosed with crohns following emergency surgery for a bowel perforation after many years of misdiagnosis. The work element is incredibly hard, I’ve not been able to work full time for over 10 years but I can put my socks on and have a shower so no benefits or help

Sorry to hear that. Yes same here, I barely manage my part time hours, I don't have any life outside of work and resting, it's miserable but I can raise my arms above my head, wash myself and cook a meal so fit as a fiddle then!

I’m autistic and despite having a genius IQ, I’m fucking incompetent and hash my low-grade job. A trained monkey would be better.

only just off benefits though and enjoying the cash, but don’t know how long I’ll last before they fire me for being fucking useless.

As a matter of fact I happen to be really feeling it today too.

I’ve realized I have no choice but to replace one of the specialists I’ve been seeing for years because he moved to a new location that has an issue for my disability and risks my health by entering the office. It’s a ridiculously easy fix on their part, but I’ve spoken to the office manager and the specialist and they refused to listen, even after I pointed out that it was a cost free fix and they were out of compliance with disability law.

I’m just so weary. It’s always something.

It's a horrible feeling, to feel like you can't reach your full potential. I understand, keep going though.

Yup. Done with the multiple, repeated testing only to be told "we know there's an issue but we have no idea what". And now trying to accept that I may never be diagnosed properly. (which scares me - it's my vision and really quite fucking scared that I may lose what I have left)

I'm so sorry you're going through that. Having a diagnosis is so important. It took me 2 years to get diagnosed, felt like a lifetime especially when you're deteriorating during that time. Keep fighting.

I have a bad wrist. I'm classed as too well to be disabled, and I want to work anyway - but there aren't that many jobs that can be done with one arm!

The heat has been awful. My hand and arm have swollen so much I can't use it at all. Usually I can use it a bit.

I’m autistic and have ADHD (late diagnosed) and they cause me difficulties but I wouldn’t change it because they fundamentally shape my personality, way of thinking, etc.

However, on the physical side, I have fibromyalgia, hypermobile joints and PoTS and they can all get in the sea. I’m in my early 30s and I’ve finally relented and starting using a walking stick on long/particularly bad days. Fibro means I sleep like shit anyway but last night I saw every hour on the clock because I was just so sore everywhere

started using*

I have just been diagnosed with another rare condition after just about adjusting to the impact the first one has had on my life. Had to give up my career, no social life anymore…. Just doctors calls, hospital admissions to enact my protocol, more surgery ( GA no 5 coming very soon ) and just about to start another new Med today to add to the 13 I’m already on for various things.

I hear your OP. It’s fucking shit, I hate it and the impact it’s had on my mental health and self esteem is horrendous. Yet people don’t understand and I feel so so isolated at times it’s unreal. Sending solidarity.

Aww it’s rubbish I know, I try my best to keep positive and I usually do, but this heat is getting to me, another with MS here. Bladder playing up, fatigue even worse than usual and just want to shut myself anyway, which is what
I tend to do when I feel like rubbish. And thinking of Rishi becoming PM is helping my mood either!

I feel you OP. I don't understand why in a society as developed as ours, disabled people are forced (financially) to work to the point that they have almost no quality of life from being exhausted and in pain all the time. There are plenty of healthy, talented young people chomping at the bit for graduate jobs.

My friend had a stoma and is absolutely thriving. Like you had suffered for years and had the stoma about five years ago. She can travel again, keep appointments as she knows her stoma schedule. It was definitely the right decision for her

I'm so sorry you're struggling @Yorshiregass32 dh has spent so much time in hospital over the last 17 months with his colitis, work stress made everything so much worse.

Id quite like my disability to piss off too but unfortunately it's a progressive neurological disorder so even more fun to look forward too, yeehah!