Part time wheelchair use.

[justy]

Hi, this summer i decided to get a wheelchair for going out and about on a short trip with my family. It was so marverlous that i decided to ask my GP for one. Now i use it if i go out on day trips with my family or for shopping. I have had some issues with feeling weird about getting out of it and walking and my kids find it a bit embarrasing too! I push it around until ive had enough and them jump in and my hubby pushes me. Until i could do this i hadn't been out on a trip with my family in 2 years.

I stumbled across this great article on the INvest In M.E website about part time wheelchair users and the challengfes we face and thought others might be interested to read it.

http://www.investinme.org/InfoCentre-Library-JIiME-02-02-Wheelchair Use and Attitudes.htm

How do you feel about being a part time wheelchair user? how do your family and friends cope with it?

All the best, Justy.

 

[taniaaust1]

I found it felt weird too and I was embarrassed at first when I first started using electric scooters (not sure if I have to right word, those little things one can ride in). After being mostly housebound for a very long time and not having any outtings, I got dropped off at the zoo and hired one. I had such a wonderful day (I took a picnic rug with me and also had a sleep on their lawn there in the middle of the day) that I then started to ask to be taken to others places where I could hire one and have an outting.

I hired one for a public garden outting .. I also used one in IKEA and done a shopping trip like I hadnt been able to for years (except I still did end up collapsed in IKEA and they were going to ring ambulance, my orthostatic intollerance was so bad at that time I couldnt even sit long). But neitherless.. I was so happy to be getting out and doing things. It was like being free again.

If I got worst then I are now again.. I would go back to using one when I can hire one. (for me wheelchair not suitable as my arms tire out almost right away).

None of us should be ashamed of using aids like this if we are needing it and it can be a massive relief to do.

 

[justy]

Hi Taniaaust 1, your story of hiring the mobility scooter really brought back memories of how great it felt the first time i used the wheelchair - the feeling of being able to go out and be free! I have to have a manual wheelchair -unlike the woman in the article who uses a self propelled one, it would make me too exhausted to push myself along - although im considering after reading her article that it might be possible with a light weight one. That means i cant really go out on my own and i have tpo say it does make me feel like a child being pushed around. Its amazing how nice people are to you as well - everyone smiles and says sorry if they are in your way - i bet their faces would soon change if they saw me get out and start walking!

 

[SOC]

I use a manual wheelchair when I go out and about with my family. I couldn't go shopping with them or to any event where's there's much walking without it. My daughter never had a problem with it, but then she's older -- in college -- and has ME (although in remission now). My husband insists on the wheelchair because he's seen the results if I don't use it. I still walk around the house and from car to restaurant if the walk isn't far. When I was teaching some after school classes the kids got a big kick out of pushing the wheelchair through the building -- control and power, what more could a kid ask? Maybe your kids could learn to look at it that way.

There is no way I could push a manual wheelchair by myself. That would be worse than walking. I rented a power chair the couple of times we went to Disney World. The sense of freedom was glorious! I could go wherever I wanted on my own! I could be out and about for hours! **sigh** I loved it. It's not as convenient at home, sadly, because it wouldn't be useful around the house (and I don't need it), and to use it out and about I'd need a wheelchair lift for the van, which the insurance company won't pay for. Even so, if I could get the insurance company, the doctor, and the wheelchair distributor to cooperate with each other (a seemingly insurmountable feat), I'd probably get one anyway.

I read somewhere that the majority of wheelchair users are capable of walking some, just not enough to get about bigger locations. That seems likely given how often I was asked asked, "Can you transfer?" at Disney World. Still, people are surprised if we get out and walk a bit (although they shouldn't be) so I don't do it much. Just another one of those unfair judgements people make about us.

IMO, a power chair is one of the best quality-of-life improvers available to us. Wish I could manage to get enough organizations to cooperate so I could get one.

 

[justy]

Thanks for telling us about your experience SOC, a power chair sounds great. I really hate being pushed because i feel so out of control (im a control freak!) also my husband loves pushing it really fast while making stupid car noises (lol)

My kids are O.K with it - they are 11 and 8, the 8 year old has said though that it embarrasses her when i get out, but i think they do see the value and are learning to live with it - my older kids ahvent seen me with it yet, but i have a fiarly lighthearted atitude to it.
Justy.

 

[Sallysblooms]

Wheelchairs are great. I need mine less now but I see them as a great tool. I use one (hubby pushes) in large stores, or we use the elec. ones at Target stores etc. I don't worry about getting in and out. I sure don't worry about what others do in a w.chair so I don't think anyone cares about what I do either. With POTS, there is no choice. I am so much better, but on a bad day a wheelchair is the difference between going out or staying home. Going out to eat, to church, shop etc is great.

We bought two w.chairs. We may buy a scooter, we will be looking at them soon. I also have two folding chairs that are great in shops where a w.chair is too bulky.

To answer the question, my friends and family just want me to get out and do things and be happy. I would feel that way for them too. It is all about freedom and saving energy and for POTSY's, keeping BLOOD in your head, ha.

Oh, my POTS has improved so now, I can push this wheelchair when we take walks in the neighborhood and then sit and rest, then walk more. I also have one with the manual wheels on the side. This is lighter for trips. Hubby pushes. Making progress! Not overdoing has been good.

 

[justy]

Tht's great news Sally, that you are feeling so much better and getting out and about. I think a lot of people stay at hoem and dont have more of a life because of how other people view the idea of a chair. It took me a long time to realise that it was ok to use one as an aid to getting out and having a life. This morning i spoke to my daughter who lives 5 hours away about going down for her 18th birthday in January. She wants to go ice skating and then out for dinner - now i have my wheelchair and my valium to dampen down the overstimulation i can look forward to it without the kind of worry i used to have - i spent too long waving everyone goodbye at the door, while they went out, because i didnt realise how much the wheelchair would change my life.
Of course i still cant go out too often or i crash, but i can have some life outside the house and jpoin in with my family, whioch means so much to me.
Take care, Justy.

 

[Sparrow]

I feel self-conscious about walking in front of people too. Feels like they're going to assume that I don't really need the chair then.

I do, though, and it's been a great help. My POTS is pretty awful, so we got one with a back that folds down almost flat so that I can lie down if needed, or in waiting rooms, etc. I also find it helps me a lot if we put the feet up so they're sticking out straight in front of me. Keeps more blood where it's needed, I think. My husband pushes me around. We've even tried going for walks around the neighborhood with the back reclined so I'm pretty much lying down (I can't sit up for long enough to ride in the chair for longer periods without lying back yet). That's been great. Tough the first couple of times feeling like people must be staring at me wondering what that monstrosity is all about, but worth it.

 

[justy]

Yes Sparrow, i agree that it IS worth it - your solutions are ingenious. I dont have POTS and so dont need to lay down as much but i do feel the need to put my feet up and have been wondering how to do this in the chair, hadnt thought of putting the feet bit higher up and straight out!
Thanks, Justy.

 

[Calathea]

I don't use my wheelchair much because my flat is up a flight of stairs, but it gets trotted out occasionally. It was supplied by the NHS and is a standard assistant-propelled wheelchair. Recently I requested that they exchange the front small wheels for large wheels, and I wish they'd supplied it to me like that. It's easier for someone else to push now, especially with kerbs and the like, and it also means that if we're in a shop or similar and I just want to move myself about a foot closer to get to something, then I can do so. Plus it can be handy for wiggling around tight corners, although I still haven't quite got the hang of which wheel to use for turns, especially when reversing. I wouldn't want to self-propel for more than a foot or so, however, even on a completely flat surface.

One of these days I will have a nice ground floor flat and a powerchair, and I will be able to zoom off on my own!

 

[justy]

Hi Calathea, i didnt know you could do that with changing the wheels - do you know how i get that done? i also have a standard NHS one. It would be good to be able to move myself a few feet in a shop, like you say it's frustrating if you are in the chair and just want to move slightly nearer to something, ive found myself trying to push myself forwards but its too hard!
Take care, Justy.

 

[Calathea]

I honestly can't remember, but it was pretty simple. I think I rang the local hospital which deals with loaning equipment and such to start with, and then got passed around a bit, and once I had the right people, it was easy. I explained what I wanted, no one queried it, and a week later someone came and exchanged the wheels for me. They should really do it as standard, as it makes life easier for both people involved, but I reckon it's more expensive so they don't. It does of course make the wheelchair a smidgen heavier, but from what I've heard it's more than compensated for by being much easier to push.

Bear in mind I'm in Scotland and you're in Wales, so things may be different there, but it's certainly worth a shot.

 

[justy]

Thanks Calathea, its so annoying how heavy the wheelchair is allready. If my mum wanted to take me out for example we couldnt do it without my husband as neither of us can lift it in and out of the car, but a little more weight wont make any difference to my husband, hes pretty strong and fit.