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It said "Introduce yourself", so.... - Carers UK Forum

It said "Introduce yourself", so....

Tell us a bit about yourself here.
Hi there,

It's hard to introduce myself in a cheery manner, because everybody on this site is going through a hard time, to a greater or lesser extent, or we wouldn't be on here.

In May 2012, my wife had to get an emergency operation, after being diagnosed with Cauda Equina Syndrome (look it up). She was always very capable and did just about everything around the house up to that time. Both of us had permanent jobs after a couple of years of getting by with agency work. She was nearly paralysed from the waist down. gradually some function returned, but so did a great deal of constant pain. She can only get out on a wheelchair or scooter and can only get to the car because it's nose is against the front door and she can hold on to it. In the house, she gets around by holding on to walls and furniture and using a stairlift. She will never get better. She can't drive herself or go shopping, because she is on a maximum dose of painkillers and an opiate patch. I've had to learn to do nearly everything, except that she manages most of her own personal care, fortunately.

Since then, due to us both having to give up work, we've been quite isolated. I volunteer one morning a week helping other carers with IT skills. She sometimes sees friends and relatives, but this is her home city, not mine.

I've come to terms with her disability, but I'm not disabled and I feel it has limited two lives rather than just one. I also have a grown up daughter at home, who has health problems, including Asperger's syndrome. She needs support too.

I suppose there are people having to cope with a lot worse, but I have no friends, other than Facebook and Twitter ones, and I miss intimacy. I take anti-depressants, but, if I take the full dose I have been prescribed, I can't function properly. I find it hard to enjoy anything any more.

On top of this, I am more than aware of the machinations of the present Government towards the disabled and our NHS. So far, we haven't been affected, other than to have to pay £10 a month towards Council Tax, but I know it will be our turn soon, and dread every visit from the postman. As if we didn't have enough to cope with.

We both worked nearly all our lives until my wife's spine collapsed. We are both in our mid-fifties. The press and government talk about people like us as if we are something to be hosed off their shoes. We have very little to look forward to and sometimes wish I was brave enough to just end it. I keep going for my girls.

Anyway, I never miss BBC Casualty and there's a triple vodka with my name on. Hopefully feel a bit better tomorrow. Sunshine helps too. :D
Is there anyone there for a chat or a moan?
Sure, shoot!
;)
There is accessible and accessible - it all depends on your carees needs and interests. I'm really looking forward to heading south to the WOMAD festival in a fortnight, camping with my son: they have great disabled facilities, including loos, showers, and raised viewing platforms, but maybe that isn't everyone's cup of tea. Well, tough: it is mine! What's more, carers go free, which can't be bad.
That would be great if she could sit upright long enough. The best thing we do is the Everton match and more or less straight home again. Carers get in free there too :) When she first came out of hospital, we thought her condition would improve and bought a trailer tent. I had to sell it on. Your festival sounds great, but she needs her comforts. I'm happy to rough it. Enjoy.
John_1507 wrote: .We're supposed to be near the top of the list for a bungalow with space for her to use a wheelchair indoors, rather than grabbing hold of walls. The supply of suitable housing is dwindling, but, if we were all on one level and I knew she could get about sitting down, maybe I could get a bit of a life again. I think my patience is thin because I was brought up by my grandparents and look back with some unresolved bitterness that I had to give up my education to look after them too. I keep thinking it's about time somebody else took a turn. ;)
It's a bit frustrating to have a bit of go in me. I want to go out and have fun now and then. Is that too much to ask? My wife wants us to go out together. Yeh, if we can find somewhere accessible, I sit there without a drink and after less than two hours she can't help needing to lie down.
Liverpool has many lovely old pubs, but it seems nearly every one is inaccessible :(

All in all, with money tight, and the effort needed to go anywhere, she goes upstairs to crochet in bed watching rubbish and I sit downstairs on Facebook or Twitter, sorting out the world's problems. I suppose it could be worse, lol. Sometimes it's like separate lives.
Promise to be cheerier the next time I'm on, now I've got that off my chest. Off to watch Casualty on the Tivo box :)
Hi John hope your feeling a bit better today. Caring for a partner is not easy. Try and make some time for yourself. Sending you both (((((hugs)))))).