I need to accept I am disabled

[LST]

I am almost 30. I have rheumatoid arthritis. My body for the past 15 years acts like I should be at least 80, and to be honest with you, my nan is in her 80s and she is in a better physical state than me. I have always tried to 'get on with it' but recently, especially with not getting out during lockdown, I have had to accept I just cannot do what others can and will never be able to. I've never considered myself as disabled. I know it's nothing to be ashamed of, but, I've never wanted to accept that I was. But I am. And it had made me so low. I can't really talk to anyone in rl. I can't open up properly. I'm always the lighthearted one that doesn't let anything get her down.

I seem ok. People see me and see my slight limp and how I hold myself a bit awkward. How I don't open doors or hold things properly but that's about the limit. The grimaces I make when I stand sometimes I hide pretty well. But that isn't me. Inside I sometimes scream. Scream it's not fair or just scream in agony. Not being able to squeeze toothpaste out of a tube in a morning or get my pjs off to change into clothes. That's me. A daily struggle I try and hide. I hide it from everyone. I don't want to seem weak. But in body I am, even if I try not to be in mind.
I was diagnosed at 16. I have been fighting this losing battle ever since. 14 long years. I look forward to needles in my knees, draining fluid that is not meant to be there and replacing it with steroids that give me a few weeks sometimes months if I am lucky, of slight relief. A hip that is no longer the one I was born with because my body destroyed the original. There are some worse off than me and I am so thankful for the support I have around me. My boys keep me going even though it hurts my heart when they ask if they are allowed to hold my hand, or if they can't because that's my poorly arm. Not being able to make their beds or get on the floor and play with them. Picking them up has been forgotten, they'd never ask me now.
The NHS has been a constant rock. One that never has given up on me, one I've relied on for 13 years. I can call them and see a consultant normally the next day for pain management. I don't know what I'd do without it.
I don't know why I'm sharing this. It's not for attention, but I suppose to show that what you see isn't always the full story. Not just me but everyone. Be it physical or mental health. Most of us put on a front to the world so others don't see the real thing.

Sorry. That is so long. Sorry.

I know someone with similar - has been in a wheelchair at times and is in constant pain. Also diagnosed 'young'.

Because it's not visible and everyone's granny 'has a touch of arthritis' people think it's just a few twinges when it rains or a bit of stiffness here and there.

I'm sure your boys are a great comfort to you and they understand how someone can be in so much pain, yet put on 'their face' to the outside world. They will be compassionate and understanding people and I know they will be in awe of their mum when they get older.

I hope you get the help you need - not just pain management. Come on here and scream and throw things - you will always find someone on there who knows what you are going through and hopefully have some good suggestions.

( I like the bear)

It's the hardest thing in the world to admit you need help because you are disabled. It's frustrating to say the least, particularly when you want to do something you wouldn't have thought twice about before. You feel a waste of space and even think that your family would be better off without you. You hate that your children have to pick things up or make their own meal because you can't. It's made worse by having to go cap in hand to get PIP, having to tell a complete stranger about the most intimate parts of your life.

It's pants!

@lordfrontpaw thank you for your reply. I do need to vent. I just find it hard in front of people. It hurts so much. Everyday. But I just have to carry on, for my boys and DP and everyone. I work FT. But it has always been office based. I couldn't do a manual job. Or anything that requires using my hands more than a mouse and keyboard really and some days even that is a push. I'm on so many meds that I have no idea what will do to my body. I snap sometimes, at those closest to me and I feel terrible after. I had a good cry the other night. DP was working late and the kids were in bed. It made me feel a lot better. I just wish I could express myself in person to people.

@witchdancer that is so true. I can't even get out of a chair some days. My DP didnt sign up to be a carer for a 30 year old. Its not fair on anyone 🙁 life can be so shit can't it. I hope that you are ok? It sounds like you're talking from experience

Yes, I talk from experience - I have fibromyalgia, rheumatoid arthritis, spondylitis of the spine, and a myriad of other conditions. I'm ok though, I have learned to accept it and manage my conditions through lifestyle. Of course I have bad days but generally am ok.

My DH always says 'if it was me that was disabled, you would be there for me'. How true is that!

@witchdancer exactly. I would be there for him. But I just feel so rubbish and useless some days. Its dawned on me most when lockdown first happened and Joe Wicks released a OAP workout that I had no chance of doing. Sad isnt it what makes it sink in

It's embarrassing isn't it! I tried a yoga for OAP's and failed miserably.

I have been disabled from birth and I don't think I've ever not hoped things would change, despite the impossibility

You aren't alone

I know how you feel because I've felt exactly the same,sadly the NHS is a huge part of why I got so ill and became disabled.

For me my 5DC and my amazing DH are what keep me going,my biggest guilt is the fact that my DD12 has only ever known me as a mummy that is very ill and disabled and I've shed so many tears over that.

I also drove my poor parents around the twist for a few years after I became disabled because I kept refusing to apply for DLA because I didn't think I deserved it and I hated the thought of relying on a benefit and not being able to work again,I know I should have done it sooner because as soon as I applied for it I was given it.

I hope as time goes on that they find better ways of helping you and your poorly body OP

I have no experience of what you are suffering but I just want to send a huge (delicate!) hug 🤗 🤗 🤗 🤗

Have they not considered giving you biologics?

Steroids are just firefighting a burning house without turning the gas off.

It's shit, no doubt about it, but if you're not receiving adequate medication/treatment, that's not right.

Thank you all for your responses.

I am on biologics. I am swipping and swopping all the time with mexotrexate. Nothing last very long to control my inflammation. Naproxen works wonders but ruins my stomach if I use it for too long.

Yep, this. I had a mini stroke 18 months ago, which led to a number of diagnoses which I cannot accept. PoTS, mixed connective tissue disease and a neurodegenerative disease. I'm 34 and my body feels more like that of a 94 year old. My DH has been my absolute rock over the past year and a half, and I'm always worrying that it's too much for him and worrying he'll leave me for somebody 'normal'. And because to an outsider I look 'ok', people don't understand what it's like to be in constant pain, or to not be able to control my tremor. It's shit and I hate it. to you OP

LST have you tried lansoprazole with the naproxen?

Op I’m sorry

Thanks so much for having the courage to share this, it’s exactly how I feel. I was diagnosed with a condition when I was 13 that means that both of my shoulders continuously dislocate (have dislocated thousands of times, and are often dislocated for weeks on end). It also causes other problems like disc prolapse and premature degeneration of my spine. I also try, and do manage to hide it really well. I got incredibly fed up of people treating me like I’m a delicate little flower, and giving me loads of sympathy - which is why I hid it as much as I could. There are plenty of things I can’t do (I can’t pick up very much, I get very hurt if someone knocks into me in crowds, and can’t use my arms fully) but there are lots of things I’ve managed to adapt with. I managed to get a distinction in a masters, have my own successful business and try and live life positively. I’m only in my mid 20’s now so I’ve got my eyes set on a lot more! I’ve realised through all of this that you only have one life, and that hey if you can’t do something there’s always something else new that you can do. I’ve recently learned that I may be physically weak, but that doesn’t make me a weak person. I used to be ashamed to be poorly, but now I’m proud, and don’t care to hide it. It’s taught me so much about myself, and has made me so strong and determined in my life. I’ve had to work harder than most other people, but it just makes me appreciate things more and has given me more resilience. I don’t feel the need to hide it anymore as it’s a part of me.

You should be so proud of yourself, and all that you have accomplished. 💐 You are fierce and strong, even if you can’t do everything that other people can. Being disabled isn’t a weakness, it’s a strength. Xx

I get it OP, it is difficult to accept. I have MS I try to keep positive, it took me along time to accept it. Life has changed so much, I try to live in the moment and not think about the future. Good luck OP wishing you gentle days ahead

I hear you OP.

I'm not in as difficult a position as yourself but I do absolutely empathise.

I suffer from eczema and thankfully I manage to keep it under control about 60% of the time.

Similar to arthritis, there's a tendency for people to "know" someone with a relatively mild version of the condition and simply don't understand that some of us are living with these conditions that are in a different league.

On a day to day basis I have to look after my skin very carefully to prevent a flare up and that impacts a whole lot of choices that most people wouldn't understand (from what environments I can be in, what clothes I can wear, how I bathe, how often I have to moisturise and being in a place to do so, what make up I can use etc).

That's a PITA but frankly tolerable.

However when I get a flare up I can be in agony with weeping, cracked even infected skin that's on occasions has led to being hospitalised.

I've been in the toilets at work in tears from the pain of gently moving arms and legs that are cracked/weeping and bandaged (and hidden under thick tights/work clothes that do a good job of hiding it but actually make it worse).

I've removed work shirts (I wear under a blazer/jacket) that are so bloody after a day in the office they look like I've been flogged

• and that's just the scabs, opening and bleeding from normal movement.

Worse it itches and hurts so much it's constantly on my mind - it's like living with half your brain engaged elsewhere and more so when you're also sleep deprived from the same condition.

Work colleges haven't a clue and tbh I don't want them to.

They know I have eczema but I think they'd be horrified if they ever saw my skin in the midst of a flare up.

I've had much planned holidays ruined/cancelled, major life events compromised and it's so damn annoying.

So I get you OP and rant away if it helps because I do have a notion of how shit it is even if I'm lucky enough to we mostly well 60% of the time.

Much sympathy OP, getting one's head round disability is possibly harder than the disability itself. I'm in my 40s now and like my mum before me, the older I get it's easier to be arsy and say 'I'm not doing that' and also not being expected to be as sprightly as when I was in my 20s, so there's less pressure on me.

Hope your boys can climb up onto your bed and give you a lovely cuddle that doesn't hurt.

Another chronic pain sufferer here. Everything that can be tried has been tried and here I am still in pain and in the main trying to hide it, I hate the fuss.
Last year, I found out about a CBT group course for chronic pain. I attended the full 12 week course and there were a few things I found useless, but some things I learned have helped with dealing with the pain and how it makes me feel about myself.
Anything available in your area? Clearly after lockdown

My life got better when I stopped thinking of myself as a "normal" person who kept failing to do things, and started thinking of myself as a disabled person who could do quite a lot.

It meant I could plan realistically, starting from what I know about my body, rather than try to do things the old way.

It also took away (some of!) the nigh constant experience of failure and the feelings of not being good enough, not trying hard enough.

I'm not pretending this works every day – I still have days where I beat myself up over the not being good enough. And chronic pain and debility are pretty unpleasant no matter how one dresses them up.

So vent away. I hear you.

I find the worst aspect being the constant split between who you know yourself to be/how you see yourself and how others view you either because of how they react to you or in the well intentioned yet upsetting things they say

Other people's response to disability (social model style) is way worse than the actual illness itself

I feel the same as you and other posters. I'm 33, I have Rheumatoid Arthritis, PoTS, migraines, Elhers Danlos Syndrome and a load of other niggly conditions.

I got diagnosed when DS was a tiny baby and my hands were so painful I could barely hold him. I'm not able to work, or have any more children. It's been very hard to come to terms with and I feel like a complete burden on DH.

Hugs you have sympathy I’m 54 soon and cropped with arthritis I used to cook but can no longer do so, in fact my arthritis has caused me more grief than my eyes due to the fact I’ve always had bad eyesight, we now have a cleaner as we can’t clean like we used to, we use our pip money for it, worth every penny.