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.

Yep.

Been put on a med that has made me put on 3st (I was already huge but managing) and develop lymphedema.

That combined with the knackered shoulders which due to covid, weren't treated at all (should have been surgery, instead just pain meds to mask the burning fucking agony), means my last scraps of mobility are gone, and I can't deal with personal hygiene... meaning I cannot go anywhere I may need the loo without someone who can help and the number of people in my life who will do that or who I would ask to do that is.. 1. (Ok 2 but one is a paid carer who is marvellous but also lives 300 miles away).

So I now can't travel, can't go out without person 1, can't go anywhere that won't fit two people in the bathroom or where I don't want people seeing that both of us need to go (and person 1 is male so it will be commented upon)...

Yeah, pretty over this now. Had enough. Am still not brave enough to explain to those wanting me to deliver seminars or attend their conferences etc, why I can't come either (person 1 is my OH and if im away he has to be home for our dogs).

I don't have chrons but uncontrollable IBS & fibromyalgia. Early 30's & also fed up. Can't manage part time work so have agreed a 6 month career break to give me space to focus on health. Not sure if I will manage to return at all tbh. I'm also disabled but not disabled enough for benefits - last time me working part time & driving went against me. Don't think I have the energy to go through the process again.

+25 years of Crohn's here too and this last 5 years has just been utterly exhausting. So fed up with it, can't go anywhere or do anything and the tiredness and pain just suck all the time. I feel for you. My only positive is I've managed to get a part time job working from home who seem to have a lot of sympathy for my condition and make lots of adjustments to my hours etc as required but I know that's incredibly lucky. Stress is the worst for mine. A global pandemic and shielding has not helped at all. Sending you hugs

I have ME/CFS, Fibromyalgia, Arthritis, peripheral neuropathy & I'm autistic, most days are like wading through treacle, I hate it & the heat isn't helping.

I hear you all! It's a pile of poop dealing with disabilities, pain, lack of empathy & a crappy welfare system where people with one leg, one arm, wheelchair bound, spectrum disorders etc get refused benefits due to nasty Atos or Capita or whoever does the assessments. They get bonuses for failing people & are forced to do this by their bosses! Any Gestapo benefits assessor's on here care to refute?!! I should claim PIP but I know it will be refused, go to appeal & then tribunal. Most of us are too ill to function let alone fight the system.

I am fed up of people not understanding or even trying to, or dismissing you as if you are making things up.

Also done with it for today. I'd agreed to walk my neighbour's dog this evening and the pain has descended and my mobility is sliding away.

Today is another day of shite. I think I have yet another micro fracture in my vertebrae (can’t honestly recall how many I’ve had) and the cyst that is the utter bane of my life on l2-3 is being an arsehole. Osteoarthritis at the age of 19. Woo. I can’t even have any more surgery to stabilise anything as it crumbles into dust (or wasn’t there to start with, lovely birth defects). 30 years of sciatica & a consultant who shrugs & says it’s buggered. My sciatic nerve is split & half goes through a muscle it’s not supposed to. Lovely.

So today I’m on the big girl medicine (so probably writing nonsense), brain is confuddled with today’s top whack of pregabalin (it’s not even 5pm yet).

And then last month, in testament to the shocking crap heap that is my wretched carcass (and exactly 1 month from my dad’s death with this on his death certificate), my 6 monthly medication blood test shows I’m diabetic.

No warning, just plop. Dia-bloody-betes.

I’ve just titrated onto the highest dose of metformin yesterday so to be frank, I’m not gambling on any farts. Even with all the opiates I take that slows my IBS (another teen discovery, lovely), the Met plops are just adding to the joys of today.

On the upside, I’ve just lost a stone (possibly mostly through my bumhole) in the past 3 weeks. That, and any oral pleasure has been sucked out of my diet.

I’d cry, but it’ll make me hotter, so bugger that.

And I had my smear test this morning. Bah!

Very fed up today. Work is being particularly irksome. The heat doesn't do much for MS and I've been very tired and unsteady and this evening I have to go to an event even though I'm not physically up to it and shouldn't be doing it because I'm immunosuppressed. So I shall be publicly crap instead of being quietly crap at home. I really do have to go though.

Yep I hear you. Always tired, ibs, skin issues, brain fog. It's really no way to live and no one understands :(

I’m the same with Crohn’s. I’m constantly anaemic because I’m shitting and vomiting so much blood. I can barely function day to day I’m so exhausted. I can’t look after my children properly, I can’t climb the stairs to grab something I’ve forgotten without having to sit down for 10 minutes to catch my breath.

I used to get blood transfusions every 3 months to manage the anaemia but they’ve changed how it’s done and I now can’t apply for a blood test until 3 months after my last transfusion. I then wait 3 weeks for a blood test, another week for the result, a week for the hospital to call me after being forwarded the results and then up to a month for an actual appointment. I told my doctor I felt suicidal as I am so anaemic that I’m sleeping 18 hours a day and essentially neglecting my children. He prescribed me antidepressants rather than getting me a blood transfusion 😭. I cannot keep doing this for the rest of my life. Im too tired.

I hear you all. I'm so sorry so many of us are struggling. Thankyou all for sharing though, it does help to hear that you're not the only person out there suffering in silence.

I was born with a disability and it peaks and troughs most days I'm ok other days it just passes me right off , we are expected to "be brave" etc etc but sometimes it just sucks ! I'm assuming you have looked into benefits ?

Pisses me off ! Autocorrect didn't allow me to swear 😃

So sorry OP. Crohns is a really horrible disease. It sounds very difficult for you.

That’s so awful for you.

Chrons disease sounds awful. A neighbour had it I used to take her dc to school when she wasn't well enough to get out

OP I am so sorry and I understand.
I had UC for 16 years before I had stoma surgery and it changed my life. I was so poorly and miserable I practically skipped down to the operating theatre!
My life improved 100% and I am so thankful.
Unfortunately I now have long covid and associated problems but my stoma isnt one of them!

I follow the Crohn’s and Colitis Facebook page. I have learned such a lot about it and understand how hard it is to never have any relief from the pain, tiredness and symptoms.
Threads like this do a lot to improve people’s awareness and understanding OP. Thank you.

Crohns is awful. I think a lot of people just think it's an upset stomach but its so much more than that. The psychological impact is devastating too. Its relentless.

Fellow crohnie here! I definitely feel your pain. All my bloods / stool etc coming back normal but I'm struggling like mad. I think my bowel may prolapsed again but colorectal team won't touch me until the IBD team have checked what is going on with my crohn's, so waiting for my next colonoscopy. I just tell people I'm ok now as get fed up of hearing myself moan.

OP so sorry you're finding it so hard, I've got RA and chronic pain and would love to wake up one day and not be in pain. I've just finished work and in agony as always, it's so wearing.

I have been chronically ill all my life and am having my pain meds stopped because of the new government guidelines. Since covid I have been 100 times worse. I can no longer repeat or drink am tube fed due to the lack of painkillers. Life is over well and truly.

My partner had a stoma due to cancer and the only issues he has was bags leaking or coming off which meant we ended up putting puppy pads under the sheet on the bed. There are some good groups on Facebook you could join if you wanted to talk to people that have a stoma. I think the benefits outweigh the bad points. My nephews girlfriend has one and she is happy to walk about in a bikini etc, it’s quite a normal thing now. I hope you get some relief, it’s shit being in constant pain x

My diverticular disease is usually manageable with the inevitable flare up.
This flare up has lasted over 7 weeks ( I was still going into work till 2 weeks ago) I have passed bloood for 12 days , then a Day Without Blood <hurrah> then...back to the blood .
I feel nauseous , I've only been out for 2 medical appointments
And tonight I start the Moviprep so since lunchtime (after a very sparse breakfast) no food

I am dreading the colonoscopy in case they find nothing (how mad is that ?)
There must be all sorts going on in there , if I could disembowel myself , I'd be sorely tempted .

And I'll be up all flipping night sipping the prep , sitting on the loo and looking forward to my next dose <sigh>