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Does anyone else feel low about having disabilities

(7 Posts)
Medicaltextbook Wed 13-Jun-18 17:10:08

This is a bit of a rant. Also asking whether anyone else struggles with having disabilities and prospects for the future.

I do count blessings, particularly my parents and the NHS. I know these are first world problems and how much worse it can be in other places.

I've broken another bone due to cerebral palsy. Back with my DParents. They are great but horrible being dependent and away no privacy which is hard to deal with due to autism. I hate my disabilities and my body (brain too - autism and epilepsy) and beginning to feel low. Need to look at safer flooring for my bathroom. I hate admitting my disability even though it can be obvious but it's depressing because the websites are so clinical.

(BTW I know many people don't regard ASD as a disablity - this is my take on my own ASD)

SandysMam Wed 13-Jun-18 17:12:59

I don’t have disabilities as such but do have a degenerative chronic illness. The problem is...I look fine on the outside so it can be hard to explain when I feel horrendous. It’s such a cliche but I try to count my blessings. I still totally get where you are coming from though and hope things improve for you flowers

SandysMam Wed 13-Jun-18 17:14:08

Just seen you already count blessings! Sorry...i’m not very helpful grin

Medicaltextbook Wed 13-Jun-18 22:20:31

Sandys At least I know I'm on the right lines. I really want a new body. I'm frightened what happens when my parents aren't around- I don't have a good friendship group.

ohtheholidays Wed 13-Jun-18 23:08:46

Yes I do,I became disabled 9 years ago because of an infection I caught in hospital whilst I was in labour with my 5th DC DD10.

Being disabled does really suck,the having to take thousands of tablets every year,the side effects from the medication can sometimes be almost as bad as the conditions you have to take them for.

The not having full control of your body and mind for me(it caused serious brain damage in my case)the worrying about my poor DH having to do so much and the worrying that my 5DC are now missing out because I'm so ill.

The realization that the conditions I got diagnosed with weren't the end of what was going to happen to my body,they know think I'm showing signs of ME on top of everything else.

The fact that it's 2018 and we as human beings should be getting better yet I've been shouted at,accosted,insulted and threatened and all because I'm disabled and I don't look like people's idea of what someone disabled should look like,which is a very much double edged sword I've found.

The constant pain and the painkillers not touching it,the constantly having to change plans at the last minute,I ended up missing out on an old school friends 40th birthday party that we were all really looking forward to,we'd bought new outfits for all 5DC,my DH and myself and bought my friend lovely gifts and cards and with a couple of hours to go I couldn't go,the worst one was missing my BF's 40th we've been friends since we were 4 so 40 years of friendship next june,both friends were brilliant about it but I know how upset and sad they were that I couldn't make it.

The positives I try to take from it all(Lol I know it probably doesn't sound like I have any short of a body swap which the body shop have told me numerous times isn't going to happen/selfish sods wink )is that my 5DC are FUCKING AWESOME and so is my HUSBAND and so is my BEST FRIEND and many of my other FRIENDS.

Without them and our lovely pets I know I would have given up years ago and I would have missed out on seeing my youngest DD(who is also asd by the way and has some physical disabilities)gaining her junior blackbelt in judo and becoming one of the most caring,funny,loyal and popular little girls you could ever hope to meet,I wouldn't have seen my DD15(she has epilepsy)become such and amazing artist and have such a way with horses and people,I wouldn't have seen my DS16(also asd)become such an amazing artist and get accepted at college,I wouldn't have seen my DS19 grow to become so protective and supportive and caring around me and his siblings and the fact that he's gone on to do well in work and I wouldn't have got to see my first born DS22 pass his CBT first time,to see him ride his motorbike and take on a buisness turn around it's income and be running it on his own.

With every cloud there is a silver lining,
With every storm the chance of a Rainbow,
With every day the ability to make a memory.

Medicaltextbook Wed 13-Jun-18 23:30:39

Ohthehidays don't think any body shops would want mine either - part exchange, might get something for my heart which touch wood does a good job, the rest probably scrap value. grin

AbsentmindedWoman Thu 14-Jun-18 00:55:48

Yes, I get pissed off with my chronic illness portfolio at times. I'm very lucky to be as well as I am, and I know that, but at the same time resent how much time, mental energy and effort is needed to attempt to keep it that way and manage everything - and acutely aware there are no guarantees. For all the effort I put in things could get worse.

Usually I'm pretty cheerful and shrug it off and go about my daily living, but regularly I feel pissed off, resentful and downright scared. The burn out for me is worse when I'm having a rough time with fatigue, because it's like I have so little energy I get frantic at the idea at having more complications to juggle and pain to cope with. I worry that all my time will gradually be sucked away by dealing with health, and life will whizz by without being able to achieve any goals.

My (wonderfully supportive) partner observed that it's like I'm living with one hand tied behind my back.

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