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JellyJazz
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Discussion Starter · #1 ·
Hello all,

I was just wandering how many people with Lupus use mobility aids? I use crutches and a walking stick because of leg weakness and arthritis pain and sometimes i need to hire a wheelchair for day trips/going in town.

It's a bit of a funny one because of the whole "you don't ill" thing but also because i'm 22 and have had some trouble adjusting and accepting that i need these aids to give me a better quality of life.

Anyonw else use mobility aids? (Just to make me feel like i'm not the only one!):rolleyes:
 

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You are definitely not the only one. I have an entire arsenal of mobility aides. I have forearm and underarm crutches, a cane, a walker and wheelchair. If I get any more they are going to need a room of their own :lol:

Take care,
Lazylegs
 

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Hi Jelly,

I have a wheelchair that I have to use sometimes. I get real weak when I flare, and this is sometimes the only way, I can leave the house.

Most of the time, I don't have problems getting around, though.

Your not alone at all. :) I do understand how you must feel, because I feel like people are looking at me wondering what is wrong with me. I am sure, it is only in my own mind, however. ;)

Take Care,
Sandy
 

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elisabethm
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Hi Jelly i also use cruches but only if i really need them.As i hate when people ask o whats the matter with you.But if needs them i use them so no you are not alone on that front
Take care Elisabeth
 

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JellyJazz
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Discussion Starter · #5 ·
ahhh this really made me smile!:)

I have a question for you all - is it easier to have your own chair or is it easier to rent? Money wise and convenience?

Last weekend i had to go into town to do som bank things and i went to hire a chair at 11am..they were on lunch until 2pem so i had to wait or just go for it...me being me i thought i could tackle the town. The result was my bf catching me as i went down onto the floor and then i spent the rest of the day in bed missing out on a lupus meeting i wanted to go to.

That turned into a rant...sorry!:(
 

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Hi there :)

I too wrestle with this one. Really for longer trips out I need a wheelchair as simple exhaustion is just too much even when my feet are behaving. The problem is I never know beforehand how things are going to be (just that day trips definitely require it).

The trouble with the chair (I rented one for a low monthly fee - ended up giving it back when the dust got too thick and then regretted it almost immediately)... anyway, the trouble with a chair for me, is I need someone to push it. I don't have the upper body strength to self-propel for long and then only on nice flat floors.

I think the walker with a seat would actually be the best for me for shorter trips and the kindest to my very bad wrists. I don't really need it to "lean" on, more to sit on occasionally as I can't do standing in super market aisles waiting for hubby to decide what type of potatoes he wants :lol:

Sticks don't do much for me as my problem is getting weight off my feet rather than balance.I would imagine that crutches would be very hard on either wrists or shoulders depending on which type (all my tendons in joints are pretty bad).

I don't think I've answered your question really but you're not alone. I need to do something about this and am having terrible trouble bringing myself to actually DO something.

Katharine
 

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Hi Jellyjazz

Yes I have a walking cane that I sometimes have to use - its helpful to assist me getting up from a chair when my knees are bad for example. I use it an odd time when walking but I find it does put a strain on my elbows (I have tennis elbow in both arms) and can be quite uncomfortable.

I also have an electric recliner for the house which I find myself using more and more at the moment. Its great for keeping my feet up (I have very swollen feet and legs) and also for helping me to a better standing position. Here's a picture of a similar one:



You could try getting an appointment with an occupational therapist and you might be entitled to a wheelchair without cost? It would certainly be good to have one on hand when you need it:)

Luv n stuff
Joan:rose:
 

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Joan my mom has the same chair and loves it. Push a button and it lifts you to a standing position or a seating position. Also moves the feet up to recline them or down just by pushing the button. I think it is a great invention for those who need it.

Also, the walkers that also turn into seats are used here a lot and folks seem to really like them. They provide stability from falling and offer a place to sit when you get tired of walking.;););)
 

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I have crutches, quad cane, and a walker. I got the more expensive walker which has the flip down seat and a storage basket under the seat. The only times I have needed a wheelchair have been at fairs where I could not do all the walking needed.
If I needed one more, I would seriously look into the little scooters. They run on rechargable batteries. Most break down so you can put them in a trunk or the back of a station wagon.
Sally
 

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I use a walking stick, mainly because my balance is poor, but even this is a bind when my feet are bad, as they are currently.

To enable me to get out and about more, I know I really need to consider a wheelchair, I had cause to use one 2 years ago when I broke my foot, and I hope I dont upset anyone by saying this, I hated being in it, the world took on a whole new meaning, and peoples reaction to me changed, even though I had a cast on so they could see what was wrong. Shameful of me but I was embarrassed.

My mother was here with me yesterday, very tricky, as she does not 'do sick people', very much a mind over matter lady, she had not seen me for several weeks and said she was shocked at just how poor my mobility is just now, she said you need to do whatever it takes, so if that includes a wheelchair do it, and get out there!

She is of course probably right, but I am not quite ready to accept that this is a road I may need to go down, the stubborn streak in me I guess, wanting to hang on to the shred of hope I have that things will improve mobility wise.

Vanity on my part, probably? Crutches or a walker I struggle with because of the pain in hands and shoulders, but even with a chair like someone else has stated, I have no upper body strength to wheel myself along, which then means relying on someone to push me, again, stubborn streak, I dont want to rely on someone that much!

I appreciate I am cutting my nose off to spite my face on this just now, but this thread has forced me to do some serious thinking, thank you.
 

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I found that people's reactions to the chair were fine but then again, I'm very "silly" in a chair and hubby and I raced down carparks with it. It's also great for kids, they suddenly all smile at you as you're down at their height. But yes, despite all that, I still hate it too and there is that self-propelling issue which is important.

Katharine
 

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Howdy Jellyjazz,
I was twenty-nine or thirty when I got my first cane and the specialist told me that within five years I would be in a wheelchair for the rest of my life. I am now almost a senior citizen and still using only my canes/walking sticks. Next year I am hoping to get a new sword cane - pardon me! *not* sword cane but "trash picking tool", my wife being Commander in Chief of the Trash Patrol in our neighbourhood and sword canes of questionable legality here.
When/If the time comes for a wheelchair I will stick to my requirements laid out all those years ago: tail fins, racing stripes and a V8 engine!
Douglas+
 

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My mom had a very hard time dealing with the idea of needing help. She fell a lot and I was finally able to convince her that she needed something! So we started with a cane (it was purple and fancy) and scooter. Her arms and shoulders were bad enough that she could not use a manual wheelchair. But when I bought her the scooter, I also got a lot of Harely Davidson stickers to put on it so it was her personal harley. That made it more fun and easier for her to accept.

She wasn't able to use the scooter too long and had to go to a full on power chair, and she again struggled with that so I found a way to make that fun as well - mostly bumper stickers that said things like "I'm not SPOILED!!" and along those lines. Both the scooter and power chair I bought used and we got more then our money out of them!!

When Medicare and Medicaid paid for her last power chair, we were able to donate her old power chair to someone who really needed it and it had plenty of life left in it.

We laughed about how people would look at her, and I almost kicked some guys behind once because he stepped over legs!! I couldn't believe it!! I almost got my butt kicked once because I said something rude to a couple who took the last handicapped space when I was waiting to turn into it (cut me off to get into it) and they both BRISKLY walked into the store. I pulled up in front of the door to get my mom out and then went to park the van. I was sooooo mad!!! LOL

I can understand how it must be hard to have the need to use mobility aids, but try to make it fun and make it personalized. It really seemed to help my mom not be so self concious about using them.
 

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JellyJazz
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Discussion Starter · #15 ·
Thanks for all the great replys!

What did you look for when you bought a wheelchair? (for those who use one..)

I don't have a big budget and i don't plan on using it all the time...just for day trips and in town when im more lupie then usually but still want to get stuff done!

Thank you!
 

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I most often use a chair when on holiday and on a tour (museum etc). My husband doesn't mind as it's the only time he truly can "push me around" :lol:
We have fun with it and when I do get up occasionally we pretend that I've been miraculously cured!

Tammie
 

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I needed a wheelchair that could be used both indoor and outdoor so that was the first consideration. Since I am so klutzy I looked for swing away foot rests. One I had rented had armrests that could be lowered which made it easier for me to have my arms at a better angle when maneuvering the chair by myself so that was on my list. The width of the chair matters also if you will be maneuvering it yourself. A good medical supply store will be able to help you choose the appropriate size. Seat comfort and back height is important also.

My husband was more interested in the ease of folding and how it would fit in the car.

It is a big purchase so you should really give it a test run to make sure it is the right one for you. If you can rent one you are interested in first that would be even better.

Take care,
Lazylegs
 

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Hi think we all need aids to help at some point, i have a stick, OT ahve put up aids to help in and out of shower, commode for when im on my own,

the list can go on, its all part and parcel i think ,Lin x
 

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It took me months to come to terms that I needed help with my mobility, but I now use a stick when we do long distances and when we go out for a day I have a scooter. Believe it or not its amazing the difference it has made to our social life, we can now go and do things that we used to do within limits of course, one of the best things we ever bought, my scooter.
 
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