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.

I have diverticula disease, it's not treatable, not classed an IBD, not classed as a disability, not taken remotely seriously by any doctor. Yet it causes so many chronic symptoms and affects my daily life so much. My diet is incredibly limited trying to manage it myself.
I also have IBS, chronic migraines, depression and anxiety.

Thanks again for the replies. There's a whole world of pain and suffering going on out there.

I'm not suicidal but in all honesty, the way I'm feeling today if I was told I had 12 months left to live I'd feel relieved. I dont know how any human is supposed to fight the same fight for 25 years and I dont know how I'm supposed to get through however much longer I've got to do this for!

I'm finding the fakery really draining. I think if i could just be my true, miserable self id manage a lot better. It takes so much energy to pretend to be ok but it's not fair on my loved ones so I fake it as best I can.

I'm very thankful that I got my diagnosis. It must feel terrible to not be taken seriously when it effects you so much.

It sounds horrible OP, I'm sorry.
I am also totally fed up of my (undiagnosed) chronic illness. I'm also autistic, which I quite like and find the good bits outweigh the sucky bits so far in life, ADHD which tbh I could do without cos it just means I'm dozy and unreliable far more than I'd like, and some mental illnesses that I'd gladly get rid of.
I use a wheelchair and I proudly advocate for accessibility, seeing as my body isn't going to suddenly start working again whereas infrastructure can be adapted, but I'd get rid of the pain and nausea and diarrhoea and vomiting and pain and muscle spasms and seizures and did I mention pain? in a heartbeat.

Good luck with your prep and scope. I hope they find some treatable problems for you.

Sorry you're feeling shit op

I'm done too. Rheumatoid arthritis. I was diagnosed at 16. I'm 32 now. I've had a hip and knee replaced. On the list for my other hip and knee, shoulder and elbow. I need my wrist fused too. I'm done with feeling shit and in pain and not being able to walk or do things on my own.

A lifetime of anxiety and depression.

l got ill health retirement in the end. I was 57 when l got it.

Yorkshire what has your workplace put in place for you ?

We have various forms we fill in and I always put "No" to disability because I don't think mine classes as one , more a Not-Improving-My-Life illness and I need to be near a loo.

Though I think I;m going to be contacted by HR and I can hopefuly discuss with them , once I know whats going on.

I've had shirty comments if I use the Accessible Toilets , but I'm not in a mood to explain .
So I don;t shout "Would you like to live with my bloody intestines " ?

I have intestinal adhesions (scar tissue) and had multiple episodes of small bowel obstructions

Surgeons seem to dismiss it and GPs not understand it so that isn't very helpful. Plus there is no cure as more surgery just makes more of it.

I reduced my hours a long time ago so I do 4 x 4 hour days, I can't manage any longer than that in one go. Flexible start time (for when I get stuck on the toilet). I've never had to request toilet access as my office is right next to one and there's lots of others throughout the building which I can use whenever I need to. I dont need to book annual leave for my hospital appointments although I do always try to work my shifts around them.

Definitely speak to HR, there might be some adjustments they can make to help.

I hear you OP.

I have a hidden disability and I feel like it rules my life. It’s consumes my
life and consumes my thoughts every day.

Im like a shadow of the person I used to be.

I smile on the outside and act like everything is okay, when underneath it’s all a mess.

To outsiders I’m happy and positive and have a great life…..but what they don’t know is I have regular panic attacks, I’m terrified to be on my own, I have had CBT, I take medication for anxiety and I’m on a waiting list for more therapy.

It sucks. It absolutely sucks.

I would give anything to be able to live my life free of health worries and when I look at people going about their daily business free from those stresses I feel like I hate them.

And the worst thing is, it’s never going to go away.

I got my diagnosis when I was 16 so I don’t really even remember what it was like to live a ‘normal life’ where I didn’t have to take mediation every day.

I’ve lived my life with my disability for 22 years now, things are currently at their worst and so here I am, 38 years old, and knowing that this is my life from now on.

Having a life long chronic condition that affects you every single day, is really, really shit.

People don’t have a clue what it’s like to have an illness that controls everything you do. It’s shit and it’s unfair.

Yes, 25+ years of poor health, it’s affected every area of my life … as in, mostly messed them up. I don’t remember what it’s like not to have to deal with it though, if that makes sense? If I suddenly had no health issues, I’d have absolutely no clue what to do with my life, I’ve sort of accepted that this is how it’ll always be 😏

Yep....stroke patient and I just want ME back

Yes - was going to start similar in the MN with disabilities section but that’s really quiet compared to the neuro diverse one.

I have cerebral palsy and hate it - people with lovely sandals feeling cool - me? Same boot and brace. Add in autism and makes life that bit harder. I need help to change a light bulb, just don’t have the courage or ability to ask for help. Then hate myself for that. 😞

I succeeded in getting PIP and I’d be happy to help tomorrow if I can.

I also helped DSS get it for a completely different condition.

It’s a truly dreadful system and the short-termism locked into it is disgraceful. But that’s how the state wants to play this, so we need to share knowledge and understanding.

I know we’ve had posters on here claiming to be PIP experts and being positively dangerous, so I do understand any hesitation.

I also got ill health retirement although I think it was called something else, this was mid 00s

DS has crohns and a stoma and we are only 2 years post diagnosis, so you have my immense sympathy, its a horrible condition and poorly understood by so many.
I have Menieres Disease and totally understand too sick to work, not sick enough not too. Thankfully had a good boss for years and how work with DH has ment work can be flexible for me, and we'll employ DS when he grows up if needed.

I have the same disorder, but fortunately more mildly. I also have had lifelong co-ordination disabilities (dyspraxia), aggravated by a fairly recent suspected small stroke - fortunately improving significantly from the stroke but obviously not from the underlying condition. I would settle for having only ONE of my two conditions!

Amen to that! I can relate to everything you've posted.

DH has Crohn’s and it has such an impact on our day-to-day life 😔 We went for a day out at the weekend, he has to get up early so he can go to the toilet several times before we leave and we still had to stop both on the way and the way back (30 minute journey).

We can’t even book a holiday due to worries about coping whilst travelling plus the added costs of more expensive travel insurance. Even for breaks in the UK he can’t swim or do water sports due to an open wound related to Crohn’s operations, so all the things we’d want to do whilst away in this country are wasted on him and I don’t want to do them on my own. The Crohn’s causes inflammation in his knees and hips so even if we did a city break the walking would hurt him 😢.

We’ve just had a miscarriage too and there’s woefully little research into the impact of his medication on male fertility. We’re just so fed up and want a little bit of happiness and normality that other people take for granted.

I have endometriosis and have struggled so much the past few years. Before my operation earlier this year I was in pain every day, now it’s about 2-3 weeks per month. The pain can be utterly debilitating and can strike randomly, leaving me rolling around on the floor trembling and sweating, groaning in agony. On top of this I’ve been feeling increasingly lethargic and achey over the last year. My dad had several autoimmune diseases and I’m starting to wonder if I’m developing one, but the GP hasn’t taken me very seriously and I feel too guilty about taking up their time to push it further.

I try to put on a brave face and tend to just suffer with it silently although I’m in touch with support groups that have been a great help. I’ve recently begun to pace and noticed patterns in my exhaustion, which usually comes on 1-2 days after some sort of exertion. .

I read a thread on here yesterday about earning 100k and it left me feeling so utterly useless and inadequate. I don’t have aspirations to earn that much, but I’m retraining at the moment and realistically I’m not sure how I’m even going to manage to work full time again. I don’t know how I will make ends meet long-term. I desperately want to get out there and live life, be successful etc… trying to accept my limitations at the moment is a sad process and I feel I’m experiencing grief in a sense.

I really feel for all of you struggling. ❤️

I recently read 'Plant Paradox' by Dr Gundry, which advises a diet low in lectins, he has been treating patients with mainly autoimmune diseases for over 30 years, by following this diet, there were a few short case studies with patients with Crohns. This is a video where he talks to a couple, one has Crohns & one RA, they also have their own channel now called A-Z life cooking to help others to stick to the diet, which isn't easy, they have a video to show their inprovements after a year on the diet

In case this helps anyone my DH has Crohn's and has found a certain med called Humira realy good. It's like an infusion you inject into the tummy.

My nephew had an irreversible stoma in his mid 20s and it has been life changing. He is skiing and swimming and cycling. Back at work fulltime. Does not have to be near a toilet at all times and has no regrets.

Very pleased for your DH. I hope he continues to improve and benefit.

Are you in the US? We have a biosimilar version of this biologic drug (generic name Adalimumab) in the UK which is cheaper for the NHS than Humira, known by brand names like Imraldi.

Unfortunately it's still very difficult to get it on NHS prescription and depends upon one's condition, NHS Trust area, previous medication pathway ...