Adjusting to life in a wheelchair

Dreannz

Hey, I am looking for some advice. I am just getting used to life in a wheelchair and it's quite difficult.I just avoid going out now. How long did it take you to adjust or do you ever fully adjust to this new way of life.
I find it extremely frustrating trying to do anything.

RainyDay

I'm sure it is a very difficult time for you. Unfortunately, there isn't a huge amount of activity on this forum, so you might not get great responses here. There are a few disability activists on Twitter and other social media who might be worth hooking up with. Or you could contact the Irish Wheelchair Association or perhaps an association specific to your disability to see if they have social or mentoring programmes.

martingriff

Dreannz wrote: »

Hey, I am looking for some advice. I am just getting used to life in a wheelchair and it's quite difficult.I just avoid going out now. How long did it take you to adjust or do you ever fully adjust to this new way of life.
I find it extremely frustrating trying to do anything.

Hey Dreannz I was in crutches until I was 13 and then detoriated into a wheelchair. I am now 33. Few a few years I was just like you not wanting to go out felt people were being friendly as I was in the chair (just started secondary school) I was like this really untill I was 18. Not saying it will take you that long. Adjusting can be hard. Can I ask why you are in the wheelchair. I remember I was determined I would just be like everyone else and not be like a person in a wheelchair. Do not fall into this trap please.

Look up the Wheelchair Association and find someone to talk to. Even if you do not feel like going out sometimes you have to force yourself you be surprised and how you will feel. You can PM me if you want to ask anything

Dreannz

Thanks for your replies.
I was on crutches for a few years and only needed the wheelchair for long distances but I have to use the wheelchair full time now.
Sine Christmas I have only left the house for hospital appointments , I have three to four a week I have been avoiding social situations where I need to be in the chair because I haven't really accepted it.
I am in my Late twenties I have a progressive illness and multiple secondary illnesses, I was doing well but I had a setback in November and my condition has deteriorated rapidly since then.
I have an occupational therapist but I am waiting an appointment with the crc too ,I hope they will be able to help as well.
I must get on to the wheelchair association too.

martingriff

Dreannz wrote: »

Thanks for your replies.
I was on crutches for a few years and only needed the wheelchair for long distances but I have to use the wheelchair full time now.
Sine Christmas I have only left the house for hospital appointments , I have three to four a week I have been avoiding social situations where I need to be in the chair because I haven't really accepted it.
I am in my Late twenties I have a progressive illness and multiple secondary illnesses, I was doing well but I had a setback in November and my condition has deteriorated rapidly since then.
I have an occupational therapist but I am waiting an appointment with the crc too ,I hope they will be able to help as well.
I must get on to the wheelchair association too.

It will take a bit of time to be comfortable do not rush however push yourself a bit everyday be it going for a coffee in a local cafe or going out to a friends for lunch or something.

danidanu

Dreannz,
It will literally take years to adjust. Unfortunately if your condition is progressive, like mine, I find I just get used to the way things are then they change again. But to give a time frame I think it took 4 years for me to wrap my head round the fact I was a wheelchair user. That's not to say I didnt go out for 4 years it just took that time to accept I could never go back to the way things were. Get on to your local IWA they may be able to help. Learn to use your chair correctly and to the best of your ability because if you don't you will further limit yourself. Try not to concentrate on the things you can't do rather the things you can.

Good luck

Dani

Dreannz

Thanks Dani,
That's a good point about having to constantly adjust when you have a progressive condition. I was only told I had a progressive condition a year ago so it is a whirlwind since then.
At the moment I have been to unwell to go for coffee or lunch but even if I feel ok somedays I don't ask a friend to take me for a walk or outside cause I feel like they might not want to push me in the chair.
Some family and friends have seen me in the chair and have gotten upset.

Johnboy1951

Dreannz wrote: »

Thanks Dani,
That's a good point about having to constantly adjust when you have a progressive condition. I was only told I had a progressive condition a year ago so it is a whirlwind since then.
At the moment I have been to unwell to go for coffee or lunch but even if I feel ok somedays I don't ask a friend to take me for a walk or outside cause I feel like they might not want to push me in the chair.
Some family and friends have seen me in the chair and have gotten upset.

You will need to get into your head that you have no control over how others view you using a wheelchair.
If they have a problem, it is their's alone.
It is not up to you to make any changes to ease their discomfort.
You have to adapt to your new situation ......... well tough, but so do they.

When you need assistance - ask!
If someone does not wish to help they can refuse ...... and if they do, accept that as graciously as you would if they helped .... and ask someone else.

We are all different and we all deal with life's hurdles differently.

Concentrate on dealing with your own specific hurdles and let others deal with theirs ..... unless they ask you for help in doing so.

Divest yourself of outside worries and concentrate on doing what you want ...... and getting any help you might need doing so.
Once you are comfortable in (accepting of) your situation, those around you will sense that and they too will become comfortable.

I wish you luck into the future.

fergal.b

Hi Dreannz My wife is in the same situation as yourself and also suffers with MS if you want to PM me I can put you in contact by FB or phone it might help to talk to someone going through the same things and how you each overcome them.

Best of luck.




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Dreannz

Thanks Fergal and everyone
Sorry it took me so long to reply. I was back in hospital again, just home for a few days and I will be going back in tomorrow.
Once I'm out again I'd like to talk to your wife,thank you.
I had a call from the council yesterday in relation to wheelchair accessible housing, I was told there Is just none available.
If my house was accessible I'd feel like I'd have more independence.
At the moment I'm spending a lot of my time in hospital but I'd like to think that I will get managed better and plan for being at home more and I need the house to be safe for me and my son. It's things like that I never even thought of.

fergal.b

Sorry to hear you are back in hospital I hope they get you sorted out soon. You would be surprised what the council can come up with when the right pressure is put on them so don't give up hope, there are also lots of adaptations you can get for your own home to make life more accessible. We also have a son that is wheelchair bound with cerebral palsy but we seem to manage to get by, try not to worry too much about things as this will only affect your MS you will hopefully get things worked out soon and with the help of your OT be able to carry on with day to day life even though it will be a bit different.

Hope you feel better soon "MS can be a bitch sometimes"

I will PM contact details and you can get in touch when ever you feel like it.

Best wishes.




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Mental Mickey

Dreannz wrote: »

Hey, I am looking for some advice. I am just getting used to life in a wheelchair and it's quite difficult.I just avoid going out now. How long did it take you to adjust or do you ever fully adjust to this new way of life.
I find it extremely frustrating trying to do anything.

Contact these guys: www.sbhi.ie

RainyDay

Dreannz wrote: »

I had a call from the council yesterday in relation to wheelchair accessible housing, I was told there Is just none available.
If my house was accessible I'd feel like I'd have more independence.
At the moment I'm spending a lot of my time in hospital but I'd like to think that I will get managed better and plan for being at home more and I need the house to be safe for me and my son. It's things like that I never even thought of.

Are you currently in Council housing?

Remember you have some legal entitlements to 'reasonable accomodation' relating to your disability.

Mental Mickey

RainyDay wrote: »

Are you currently in Council housing?

Remember you have some legal entitlements to 'reasonable accomodation' relating to your disability.

What if you're in private accommodation?

Dreannz

I am not in council housing but am on a list to be housed.
I am on RAS but when I first got the house I was privately renting and my mobility wasn't as much of an issue as it is now, I just need parking.
Now I need total wheelchair access.