Hello,
I was finally forced to take ill-health retirement this year (April), I’m feeling a combination of boredom and being trapped due to disability. I am wheelchair bound and have very weak arms so can do little for myself anymore (even typing this is difficult), my wife helps me with a lot of the essentials and the kids (2 & 4 year olds). Although it was great at first to finally recover from the grind of dragging myself into work each day, I really don’t have any clue what I should do with my life. I’m just watching TV most of the tme now and it’s getting mind numbingly boring.
I’m 36 and feel like I’ve done all I can with my life since I’m now as weak as a kitten (I think I’ve left it way too late to stop work, I can’t do the things I hoped to do when I stopped as I’m so immobile); I am trying to help my eldest who has just started school; I can’t easily get out and am not sure where to go. My job was a big part of my life and it’s now gone and I don’t want to suck up what little time my wife has left after looking after the house and kids (she works so hard and earns whatever time she has to herself 10 times over).
What do other people do in this situation as I feel very lost?
Thanks,
Hi Reddevilade,
I am now retired, the same as you. I live with RRMS & SPMS, since 2001.
Work was a main part of my life, which I was reluctant to give up. Until I was advised to take by my employer, in 2010.
I now, after having my fill of "Daytime TV !!! " volunteer for various charities, which keeps me mentally fit, as for manually I do what I am able to do. I only work for a hour or more, before I’am to tired/maybe. The charities do not complain and are grateful for my efforts. Even if its answering a telephone call or manning a reception desk.
There are still things you could do, all you have to do is find something that suits you. Try contacting your local volunteering centre they may know of a opening for you or put you in touch with some one who does.
Once you get started it might be the best thing for you, gives you a reason to get up and do things !!!
Regards, Andy
Hi Red, oh dear, I do feel sorry for any young person or family whose lives are blighted so badly! It`s an absolute chuffing chuff!
Okay, now thats said, lets see if we can come up with a better way to spend your days.
Have you thought about Direct Payments/Personal Budgets at all?
I have been getting DPs for 3 years and find it invaluable and the difference it has made to both mine and my hubby`s lives is amazing!
I`m wondering if you had them, you could employ someone to take you out…cinema, swimming, theatre or just out into the world and not stuck in front of the tv and going stir crazy!
If you are interested, please ask me how you go about it.
pollx
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If you have not already done so, might it be worth sitting down with your wife to think about how you can make the most useful contribution on the home front? Running the finances, shopping around on the Web for the best deals on utilities and other suppliers, planning food for the week and doing the internet grocery shopping, all of it takes time and mental energy but not muscle. It is always good for morale to find ways in which one can take some of the burden from the able-bodied partner.
These are just small practical points and do not address the existential Big Questions about what life’s purpose is, but small practical points can make a big difference.
Good luck.
Alison
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I have had times when I feel like you about the future. However, I find the following website very inspiring and interesting. It is written by a man who is very disabled with primary progressive M.S. and he says that he lives a very contented life:
Amily x
Look under ’ inspiration ’ on the site.
Amily x
dude im in the same boat as you im 35 have spms and i broke my back flying my bmw last april and now reliant on a wheelchair to get about and work have basically told me im going to get let go i dont have a pension so cant get medically retired.
god knows what im going to do im hoping when thay make there minds up i can clam something but with this con dem government in power i fear ill get f all and be made to jump though more hoops than a performing poodle lol
Thanks for suggestions, I’m still very aimless in what to do.
There are things I’d like I’m not able to for cost and physical reasons: would love to take an Open University degree, but they are so expensive now compared to 10 years ago thanks to fee rises and I’m not sure physically I could produce the assignments as I get really tired typing a few paragraphs.
I’ll look into charity work as @WelshPony suggested, perhaps I can find something I can do. Also thanks @Boudica employing someone was something my wife and I considered so will look into it in more depth, unfortunately the few friends I have left (most seem to disappear as I became disabled) work so I can’t impose on them for that kind of stuff regularly, but I do have Dial-a-Ride setup so perhaps I could use the two together.
Assuming I make it to 70 it seems so daunting having to fill 35 years of my life when there’s no ability to get yourself around (it scares me to think how much more disability this disease will heap on me in that time too).