The Wheelchair Question...

[BEG]

I love my Jazzy Select powerchair. I recently had a power lift installed on our SUV. I just made two trips on my own in the last 2 weeks. I loaded Jazzy on the lift, secured it, and drove in 4 lane traffic for approx. 20 miles. I visited my granddaughter and "walked" with her for the first time in her life (she's eight).

The second trip was to meet my girlfriend at a restaurant for lunch. There were no handicapped parking places near the restaurant so I had quite a ride to the door where the hostess let me in. I was really nervous being on my own, but everything went well. I can't wait to go to the museum, and I am amazed at the amount of "paved trails" near us.

Jazzy comes in very handy in the house, too, when I am too weakened to walk. I've put a clothes basket on my lap and carried it to the laundry at the other end of the house, for example. It will fit everwhere on the bottom floor of my house.

I believe quality of life is much more important than what anyone thinks. Go for it!

 

[Sallysblooms]

Neat! Yes, once I was able to start getting out more, it was great. I bet you really enjoy your Jazzy w.chair. I will have to Google it. I can walk into a restaurant, but not Target, church or places that are large.

 

[Mithriel]

More than half of the people who use a wheelchair can get out of it. MS users often get out and walk about a bit to stretch their legs. Because they have an accepted illness they don't feel embarrassed.

Chairs and sticks are just tools. Healthy people use a car for distances they could walk in an hour. It would take me that long to get to the end of our street so why shouldn't I use a chair?

I'm not really well enough to use my power chair now, but I had a wonderful time with it. It meant I could go to art classes on my own and I went up the park with my kids and to the pictures. It was almost as good as walking.

Mithriel

 

[Dainty]

Excellent point, Mithriel.

 

[justy]

Thank you for that Mithriel, so well explained. I know for example that i have no problem walking short distances and could probably push myself to walk further, but for days after i would pay. I can manage around small shops or example but can doa day trip with the kids (or afternoon trip) i would love to go with them to a museum or something just or an hour or 2.

I suppose i am afraid of making myself seem more disabled than i am - no just to others but to myself also. I imagine people who cant walk at all thinking i am mad to get in a wheelchair when i can walk. But on the other hand i cant tolerate being stuck at home for much longer all the time. My family are still waiting for me to get better, so that we can all get back to normal. If im lucky that might happen, but i am too afrid to tell them it might not.

 

[Sallysblooms]

After a while, you stop worrying about how it looks to other people. Whatever helps us have a great life is good. If your knee hurts, you use a cane. If being upright for hours (POTS, Dysautonomia) or not enough energy for long periods of time with CFS cannot be done, we sit in a w.chair. I think it has helped me go forward with my healing. Being out is good and you can do it for often and in more places if you have a wchair.

 

[Mithriel]

Justy, it is how you are now that matters. Your family will not want to think you are that bad, it is natural, but the fact it that you stand a much better chance of being better in the future if you do everything to protect yourself now.

I was lucky, really. I was very self conscious when I started using a walking stick but by the time I got the wheelchair I had been stuck in the house for months and I was so excited to be out that I never gave a thought to being in a chair even when I met people.

Your children are growing up and your time with them is limited. If something as simple as a chair will let your share time with them you must get one. They will be adults and gone before you know it.

Fact is, we have a very serious illness. We can hide it, but denying that fact doesn't do anyone any good. Decide what feels best for you and don't worry about what any one else thinks.

Mithriel

 

[LaurelW]

This discussion has been really helpful for me since I've been struggling over this issue for months. I finally decided, with the help of my understanding fiance, that I should go ahead and get a wheelchair. I want something pretty inexpensive and light since I only need it for trips of further than one block, that can be pushed by someone or that I can push myself. Can anyone give me advice of what to look for, things to watch out for, recommended brands, etc.? Thank you so much!:wheelchair:

 

[Mithriel]

I think they are all much the same, unless you want a special type. You measure your thighs when sitting for the depth you need and side to side to get the width. Normal chairs are fine up to about 17 stone, 230 pounds, though a cheaper one may take slightly less.

Big wheels are better even if you don't push yourself as you can turn the chair slightly as you will never be looking exactly where you want even with a very good carer :Retro smile: Being able to get into a toilet yourself is much better and don't be embarrassed to get out of the chair to go, strangely, toilets for the disabled can be a nightmare to manoeuvre a chair in.

Best thing is to google for wheelchairs. Some are relatively cheap and are probably fine for occasional use.

I never use a cushion because I need to be low enough for my arms to be supported.

You get very wet sitting down if it rains, but wheelchair covers can be difficult to put on and off. The best thing I have found is a poncho type thing for hill walking which is easy to put over me and is big enough to cover my lap and knees.

Hope you get something that suits and start getting out.

Mithriel

 

[LaurelW]

Thanks so much for the advice, Mithriel.

 

[Sallysblooms]

If you want to try one out, just rent one first. We rented one that was really nice at first, then bought it. We bought the other one that we keep in the car. It is really nice once you get used to using it. I get in and out when we are out in a large store or church. It really helps you feel better and have a good time at the larger places you can't walk in or on walks. My hubby pushes me for our walks. I walk our little dog in my chair. My little dog LOVES to ride on my lap! Cracks me up!

I have no ideas for brands.

 

[LaurelW]

So I went ahead and got the chair and used it to go to lunch with family and go grocery shopping. I couldn't believe how much easier it was, not having to stand up, and how much longer it took to get really tired.

My problem now is that some people in my family (who have always been sympathetic, esp. since my mom also has CFS), and particularly my daughter who is a nurse, just don't understand, and think it will lead to me getting more deconditioned. I have a nephew with cerebral palsy, and he is always in a wheelchair, so that is what they are used to. I've tried to explain how debilitating orthostatic intolerance is, and just how limited my energy is, but I don't think they get it. Perhaps they have never really understood just how disabled I really am and this makes it real to them. I don't know. Anybody got a clue how I can get them to be more comfortable with this? I think that this is partially why I waited so long to get the chair in the first place--I was afraid of people's reactions.

 

[Sallysblooms]

I think you will just have to concentrate on how it helps you. I am sure your nephew needs his chair of course, but that doesn't mean you cannot use one, just because you can walk. Have you told them it helps you to do more? Do they understand exactly what is wrong with you? My family has all had to take care of me. This time last year my hubby had to get us moved into a new house and unpack. Movers moved us, but he did the rest of it. I stayed with my parents and a sister cared for my pets.

I could NOT lift my head or walk. They REALLY knew I was sick. NOW, I am so much better, but I need my w.chairs. I also have a cool cane/chair! I am SO OVER caring what others think. Tell them it is like you are going to faint and it is not safe or smart to keep walking! The BLOOD does not go to the brain, it is really simple. Complex, yet simple. More symptoms and problems, but the main thing is lack of blood in the brain!

It is SO much fun when you can go out and feel more normal. Otherwise you stay at home.

Wheelchairs are not just for those that cannot walk. As far as deconditioning, some people do think that. VERY odd and it bothers me to hear it. Do they think staying in a chair or bed at home will NOT do that? I have heard it too. It is the opposite. A wheelchair gets you out of the house. You can sometimes push it and sometimes sit in it. Safety net as you get better and a wonderful thing while you need it more.

Can you print out some information about OI and ask them to read it? There are some great websites. I think they just don't understand. It is really impossible to understand until you feel it. I bet they will get used to it if you are happy.

I am SO happy to hear that you got one!!!!! We need to take pictures of our chairs and be proud!

 

[Dainty]

Hear, hear!

Excellent post, Sally. I think you've just encouraged and inspired more than a few people. :victory:

 

[Sallysblooms]

Thank you so much. I think people should lift others up and not hold them back from healing! I also think we can have some lighthearted fun about being ill, well, on the good days anyway. I have come so far and I just don't have time for negative people at all. Life is too short. Lets just help each other heal!!!!

I decided to add some pictures after replying... I think I look fab in my chair! This one is the one we take for long walks, to church etc.. I have one in the house with wheels I can turn myself. I can use a chair and I can walk. The chair is so helpful!

 

[Mithriel]

If you keep using it, they will see that you are not getting deconditioned or giving up or any of the myths associated with wheelchairs.

Don't get into arguments about it just say firmly that the chair means you can go out and have fun. Don't be defensive. Ask them if they would like to be stuck in the house all the time. Turn the discussion to why they want to hold you back.

Family do not want to think you are very sick so minimizing it makes them feel better. It is a natural reaction, they are probably not aware of it and it doesn't mean they don't care about you.

Now they are having to look at the reality and it is hard so they turn it onto you. Basically, everything has been shook up and has to settle down into a new pattern. Wheelchairs are a potent symbol of ill health and difficult to cope with when our illness is so easily hidden.

You are doing great and it will be better for everyone in the long run if you do what is best for you.

hugs

Mithriel

 

[JAXintheCity]

Thank you so much. I think people should lift others up and not hold them back from healing! I also think we can have some lighthearted fun about being ill, well, on the good days anyway. I have come so far and I just don't have time for negative people at all. Life is too short. Lets just help each other heal!!!!

I decided to add some pictures after replying... I think I look fab in my chair! This one is the one we take for long walks, to church etc.. I have one in the house with wheels I can turn myself. I can use a chair and I can walk. The chair is so helpful!

I love this wheelchair pride!!! BTW, you look FABULOUS!!!

I keep joking with my husband -- okay, I'm sort of serious -- is that if I'm going to be in a wheelchair, I want it to be BLINGED out!!! I really want a sparkly wheelchair to reflect my fun and flirty possibility.

I don't think it's too easy to buy one of these online, but my hubby is pretty handy with the tools so maybe I'll get lucky.

 

[JAXintheCity]

If you keep using it, they will see that you are not getting deconditioned or giving up or any of the myths associated with wheelchairs.

Don't get into arguments about it just say firmly that the chair means you can go out and have fun. Don't be defensive. Ask them if they would like to be stuck in the house all the time. Turn the discussion to why they want to hold you back.

Family do not want to think you are very sick so minimizing it makes them feel better. It is a natural reaction, they are probably not aware of it and it doesn't mean they don't care about you.

Now they are having to look at the reality and it is hard so they turn it onto you. Basically, everything has been shook up and has to settle down into a new pattern. Wheelchairs are a potent symbol of ill health and difficult to cope with when our illness is so easily hidden.

You are doing great and it will be better for everyone in the long run if you do what is best for you.

hugs

Mithriel

This is so, so true. My family completely believes in CFS...but they don't like to talk about it. I think it hurts them that I get so sick and there's nothing they can do to help. When I mentioned a wheelchair, one member was like, "That's giving in!"

 

[LaurelW]

Thanks so much! You guys are really, really helpful. I think I need to keep on working on myself too, because I have years of conditioning by the psych lobby and people in general. Now when I go out in a chair, I LOOK disabled, and people don't question it. Says a lot about how people with invisible disabilities are treated, doesn't it?
:wheelchair::wheelchair:

 

[Sallysblooms]

Laurel, I had a neighbor in a wheelchair with a broken foot. There are a million reasons to use one for a month or years. Giving in to me means not using all of the great tools we can as we get better.

Jaxinthecity, I looked for a w. chair in a pretty color. They are really expensive.