Should I be using a wheelchair?

[ElyseK]

I currently have scleroderma, migraines, and peripheral neuropathy. On most days my knees give out on me and I'm in extreme pain when walking on my feet. I usually end up limping and grasping onto furniture or people. I'm only 15 and the doctors think I also have rheumatoid arthritis and lyme's disease. I always have muscle soreness and being up and about makes my pain unbearable, even with a cane. Generally I can't walk for more than 2 minutes without extreme pain and being out of breath. Most of the time my whole body is feeling like it's asleep and I sometimes wake up with bell's palsy on the left side of my face. I'm getting so tired of always being tired and in pain, I've wanted to use a wheelchair. But is it necessary? Or am I just not trying hard enough?

[Hidden]

Hello Elysek.

I am so sorry that you have so much to deal with at such a young age as well as GCSEs.

I use a wheelchair as a result of Osteoarthritis in my hips, back and other joints as well as having Fibromyalgia. For me, I always expect some nurse or doctor to say, "what the hell are you using a wheelchair for?" However, I suspect that it is my own inner voice speaking.

I went from walking with a limp to using a stick and now using a wheelchair in two years. All at the grand old age of 48!

An Occupational Therapist explained to me why a wheelchair was such a good idea. If you have limited mobility, suffer from pain and fatigue then why waste that energy moving around on your own legs when you don't have to. You can use your chair and then save your energy for a task that you look forward to as opposed to being totally tired out before it. It is a 'mobility aid' so you only use it to aid you when you need to. There are no rules, it is your life and therefore up to you to use it to best suit your needs.

It helps you to get places. I have travelled to the USA and just got back from a week in Italy. I get very well looked after by the cabin crew as well as the people at the airport who help me to get about in my wheelchair. My wheelchair enabled me to sightsee and ensured that I always had a good seat in a restaurant! You get special treatment when you go and see shows, go to the cinema or go to gigs as your carer will get in free.

If you have not done so already, please get referred to an Occupational Therapist via your GP. They can then measure you up for your NHS wheelchair and get you referred to your local wheelchair team. Different areas have different policies but it seems that most will only provide you with an electric one if you cannot self propel or you use one indoors as well.

There may be other things that they can do for you as you will be growing and therefore need to change your chair every so often.

Being in a wheelchair is not the end of your life, just the start of a different journey. Remember the paralympics with the wheelchair football and athletics. You can drive a car from your wheelchair and fly a plane. You can travel the world. I am doing a Psychology degree with the Open University so you can study as well if you want.

It is your decision about a wheelchair but don't be scared about making it. On another note, not a good idea to spray it in different colours or get your friends to sign it as someone else may get it after you have grown out of it!

Good luck!

Dave

[ElyseK in reply to Hidden]

Thanks so much. I've also developed balance issues and I've been falling so a wheelchair is likely necessary. I've been referred to an occupational therapist and I'm excited that I will be able to do more. I'm no longer doubting that I need it because my family doctor brought it up before I even did haha. My joints are getting worse so I hope that the wheelchair will be a new start for me.

[Hidden in reply to ElyseK]

It will definately be a new start. Do have a think though about whether you need a manual wheelchair or electric one. I would advise an electric one as they are so much easier to use especially if you are going to go out a lot. Ones which have small wheels at the front and back with big wheels in the centre are really good and stable.

Ask the occupational therapist whether you can go somewhere and try some out. That's what I did and it was great to feel what different ones were like.

Let us all know how you got on.

All the best.

Dave

[ElyseK in reply to Hidden]

The only issue with a power chair is that I'd need a wheelchair van. I'm hoping to get a lightweight manual chair since I can take it apart easier.

[AndyWheels]

I dont think its a matter of being hard enough. IF using a wheelchair is going to make your life easier then why not do it???

Andy

[Hidden]

I have a wheelchair and I brought a mobility scooter that can be taken apart to be put into the car boot. This combination seems to work for me.

[JoA143]

Just started using a wheelchair due to fibromyalgia and it's made so much difference to going out!

My husband pushes me when needed and when not I push the empty chair which helps my walking!

Been borrowing one from Shopmobility but buying one today!