[*~aurora~*]

I was just wondering if many people with lupus used mobility aids. Especially those without hypermobile joints and neurological symptoms... I know there's a lot of overlap/comorbidity with fibro in lupus, so is it pretty common?

I have been using an aid of some kind for the past year to year and a half and I feel totally weak and hypochondriacish for it. Today I left both my walkers and wheelchair behind when we went for lunch and the chiropractor, but my mom and aunt surprised me by going to the mall and doing a lot of shopping (for us on a lunch date, I mean).

It was fun and I enjoyed it but I was absolutely nauseous from pain and fatigue by the time we hit Claire's. I ended up sitting on the floor leaning against a display and then spread out on a bench. By the time we finished lunch I had to put my legs out on the backseat of the car and couldn't buckle in fully from nausea. I feel like such a loser. :lol:

I have a feeling this is like a year ago when I was beating myself up for 'spazzing out" at a rave I threw. I was trying to talk and walk around dance and enjoy the rave, but I couldn't. Turns out I kept falling down and "shaking" and gasping and all that because I was having focal seizures from the loud music and flashy lights. :rotfl: I know this now, but I really beat myself up for it then! Probably six months from now I'll find out I have like, necrosis of the legs or something and that's why I can't walk much. (God forbid, but you know what I mean)

Anyways, I didn't mean to make this about me... I'm just in a talkative mood. Anyone use anything to get around?

 

[cad]

HI Rachael,
I am 34 and have a ocuaptional therapist coming to see me at home tommorrow to discuss mobility aids.

I saw a soacial worker a couple of weeks ago who did an assessment of my care needs and said that I do have them which I knew already although I have been fighting and struggling on as best i can.
i am a very strong person and although have spent a lot of my life dealing with illness have carried on and not let it stop even if I should have at times.

In the last year though my mobility has been severly affected and i have managed by staying at home most of the time and when I do go out going with my husband and I have a son in a buggy so use this to help me getting around. Although this has been very difficult.

The social worker I saw talked to me about having a walker or another sort of aid and if I am honest I felt so awful, not because I think there is anything wrong wth using the aids for anyone else, it just made me feel like this is a very clear determination of how bad my mobility is which is very hard to come to terms with.

I have also had experience aswell when I am out as I sure you will understand of people not being able to help themselves form staring. My Husband says that this is just because people are not used to seeing someone so young with mobility problems. I do not understand this personally as I am the kind of person who might notice someone with a disability but then I just think oh that person has a disability and carrries on about my business.

My husband says it might help if we had a wheelchair for me when I am worse as it means that it would make things easier for both of us and it would mean that getting around would not take so very long and be such an effort.

I can understand for anyone though that this is not at all easy to deal with and is not just one of those things that you can just except without a struggle and constant questioning of yourself.

I think though my feelings about my own situation aside that if for you it means that the experince of going out can actually be a pleasant one because you need to use a chair or other aid instead of a battle to succeed that leaves you in an emotional and physical mess then it is obviously for the best. Going out and about shouldn't be something that leaves you suffering should it, and if using aids pevents it from being like that then I think that it is good thing.

Take Care

Cassie

 

[*~aurora~*]

I have also had experience aswell when I am out as I sure you will understand of people not being able to help themselves form staring. My Husband says that this is just because people are not used to seeing someone so young with mobility problems. I do not understand this personally as I am the kind of person who might notice someone with a disability but then I just think oh that person has a disability and carrries on about my business.

YES. I get that all the time, it just depends on where I am. People in major cities I've been to like Atlanta and Toronto might glance at me and look away, or they'll look when they think I'm not looking and I'll catch them and they'll smile embarrassedly and immediately look away. In the more rural parts of southern US though??? oh boy. I have strangers walking up to me and asking me 20 questions about why I use it and what's wrong with me! I've developed some witty responses, but I'm usually too tired and foggy to use them so I say something along the lines of "something's wrong with my muscles and joints, they hurt a lot and I get weak easily." Not that it's any of their business, really.

My husband says it might help if we had a wheelchair for me when I am worse as it means that it would make things easier for both of us and it would mean that getting around would not take so very long and be such an effort.

I looove my wheelchairs... it's possible to get very lightweight wheelchairs for under $300 (I had one that was under 25lbs I think, but I'm selling it since I have one that I can push myself in now) and they really do help a lot. You're totally right... it should be fun to go out, not a nightmare!

You could also get a walker with a fold-down seat... this is what mine looks like:

http://www.1800wheelchair.com/siteimages/large/invacare-rollite-jr.jpg

very handy I've found, good for sitting and having someone push you, or for setting your backpack and groceries. cheaper than a wheelchair too...

 

[cad]

Thanks for the info!
I am not sure here in the uk if the ocupational therapist will lend me these aids if there is a need. Thats the other thing isn't it, paying for them!!

I just simply could not afford to do it, what the current financial climate and kids and things, its a nightmare.

So I am hopeful that she will say that they can loan them, that is certainly what I've heard.

Its really interesting to talk about though because adaptng to mobility problems is not easy at all.

Good luck with everythngs

Take Care

Cassie

 

[onetay]

Rachel,
Hon does beating yourself up inside make you feel better? I am betting the answer is no. You are going to have to find a way to deal with your limitations as we all have had to do. You need a chat room theraphy session badly lol.

Ok, now that is said, I am Tammy and I am 41 (for a few months longer so I will enjoy it) and when I go shopping Yes it is often very important to use aids to get around. If I don't it takes a lot of energy to walk a mall or super Wal-Mart store. There is no shame in getting aided when you need it. My doctor has given me a parking plate so I can use the handicap parking spots and I get some really bad looks but I don't mind as I need it as badly as anyone else that has one. It is important for you to understand that these things are to improve your life not make it worse. I know you are only 19 but lupus and other diseases like lupus don't see age, race, or ability to handle it. For once there is no discrimation (wish it for something good and not a disease). I use to laugh at my mom for using what I call an old fart cart (only because she never had a driver's lis. and ran into everything, I really had to watch her with them), and now at 41 here I am using them but at least I know how to drive them lol. I remember the first time I used one the lady at wal-mart told me those were for people that needed them and I would need to use a reg. cart for my shopping. I asked to speak to the store manager and told him I have ra and lupus and do not think one should be judged as they walk thru the doors if they need a cart or not. He was wonderful about the whole thing and told her that she was out of line and made her tell me she was very sorry for what she had done. When the public and general population don't understand it is hard for us but with our help they will see that there are times that many of these aid are for us also.

I hope this helped in some small way and it is not ment to be an attack on you but if you are not on something to help you with the feelings you are having, I am hoping soon you will talk to your doctor as you are much too young to be beating yourself up for a condition you have no control over. I am hoping that this post finds you feeling as well as you can and hope in your next post you are laughing and happy.

 

[chel]

walking assistance

Hi all,

Yes, the funny looks are something and can get annoying. This year I've had to use a cane while teaching on certain days. That freaked out the kids at first but I just kept teaching and they didn't say anything and slowly were able to re-focus.

A few years ago the arthritis was so bad I got a temp. handicapped parking permit. Since I was in my young 30s it was difficult for me to accept using it but I did. And yes, the looks at first were horrifying until they say me try to walk. Then the on-lookers just looked confused.

It would be so much easier if LUPUS looked like a disease on the outside. I say that and yet know better. I suffered with discoid lupus for several years and my step-daughter has the butterfly rashes and patches across her face when she flares and I wouldn't wish either on anyone.

Just do what you need so you can enjoy life. Aurora, I've struggled and lost the "I can still do it all" phase. Now I know, if I'm going to exert myself I either have to do it in small ways or plan on being down for the next 2-3 days recooperating. Explain it to your friends and family and then they won't be shocked.

Best wishes,
chel

 

[Katharine]

This is indeed a tough one and one I have grappled (and sometimes still do) with.

The thing is, I feel that it is daft that someone who looks perfectly normal, (as I do) and who can actually walk, should need such a thing - this is the conversation inside my own head, I have never given a second thought to anyone, young or old using a mobility aid.

I can walk and can even (on good days) walk my dog relatively energetically for about an hour in the woods. However, I can't stand. That might sound funny but the pain in my feet at times, including right now, really means that I can't stand for more than about 5 minutes, so any stop/start type of walking, or SLOW walking like one does in shopping centres, museums, parks, standing in a line at the cash desk...just kills me both pain wise and exhaustion wise. At one stage it got bad enough that even hubby admitted that we'd need to take a wheelchair with us to go on an outing with the kids but, in the end, we went somewhere else with far less walking.

Being completely knocked out by such trips plus the pain puts me off doing them at all yet I want to. I've always been pretty much get up and go and hate the family having to stay at home because I can't do something.

I think I'd find anything but a wheelchair easier to accept/ get accepted but as I have severe tendon problems in my wrists, elbows and shoulders I could never use a stick (and in any case a stick wouldn't relieve two very sore feet :lol.

At one stage I actually looked into mobility tricycles but I've never seen anyone use one around here and I bet every darned shop would want me proving my right to use it in the shooping centre.

I'm still stuck on this one and haven't actually been on a day out shopping with a friend for so so long. I think if the doc said I needed it, I'd find it easier but I don't think that the doc, who sees you for an appointment, realises how bad such things can be unless they actually see you hobble and I have to admit that I haven't yet brought it up properly.

Katharine

 

[cad]

Katherine,
I think you are absolutely right about dr's not really realising the level of disability that people suffer, maybe over time and many consulations but I know for certain taht my rheumatologist does not clearly understand the level of my mobility problems. I think my gp definately has more of an idea as he sees me more and i have given him quite explicit examples of how things effect me.

Re the stick or walker versus wheelchair issue, I am in the same predicament as I have fixed flexor deformities in my wrist, shoulders and elbows, which basically means that they are restricted and do not bend as much as they should, so when i have thought about the range os motions needed to use those things i feel that I probably couldn,t manage or atleast it would cause a great deal of pain. Not to mention my hands! I do really struggle keeping my hands in position to push the buggy for even a short period of time.

It is a prediactment isn't it especially when its more than one part of your blessed body that doesn't work!!

What a bunch we all are!!!

Take Care All

Cassie

 

[*~aurora~*]

Thanks for the concern Tammy, but no worries-- I laugh at myself for how silly I am for beating myself up for something like being sick! :lol: I know it's silly but I do it anyways. The funny part is I constantly encourage people to be nice to themselves when they're sick, even if it's just a cold... I had a dream one time that Cameron had cancer and was still trying to work and I was apparently Cuddy and I told her to "USE THE ELECTRIC WHEELCHAIR or I'm firing you and making you go on disability." :rotfl:

Anyways, Cassie, one of my friends modded her walker so she can just sort of lean on it without using her arms! If I remember how she did it I'll let you know, because I think it could be really helpful for some people.

It's really nice to make simple DIY changes to mobility aids. ^_^ and a lot cheaper. For instance, I am going to sew some rubber exercise bands together and wrap them around the handrim of my chair to make it possible to push myself easier. Someone even suggested cutting the bands in half so I need half as many! for $10, that's much better than $70 minimum for the cheapest wheelcovers otherwise which don't even fit my size wheel! Plus I get to pick the colors.

 

[momof2boys]

I was actually going to start a topic on this very thing today. I have struggled with this for so long, as most of us it is more stubbornness than anything. Right now I am dealing with headaches and CNS problems, but I have knee pain and knee joint problems most of the time. I usually get around just fine, but when I have a flare or a problem I really struggle.

My friends, family, and husband have asked me about getting a cane but I've balked at the idea telling them I don't need it.

Well, I really started having knee and hip pain Thursday. My joints are inflamed and in so much pain. This morning I fell in the bathroom. It was like my legs just couldn't hold me. You should see me, my back is really bruised. I guess I need to get one for days like today.

 

[Sage Hen]

I have a wheelchair, in the trunk of my car. I seldom have to use it, but when I do need to use it, I do.

Try not to feel bad, for things that you cannot help. Just the fact, that you asked, shows that your not the type, to use aide's, unless you really need them.

Love,
Sandy

 

[LolaLola]

Yes, there are snags with mobility aids but they are still worth having even if you don't always use them.
Because I have other health problems including Ehlers Danlos syndrome I am quite weak and cannot push myself in a wheelchair.
I muddle by with any or all of these, Folding cane, (wrist splints help with this),
one crutch with ergonomic handrest, or the pair if needed. Three wheel Rollator,
Four Wheel Rollator, or Attendant Wheelchair.

Of these, none are perfect, the three wheel Rollator is quite good,but a struggle to fold or lift. I got stuck on the second floor of a Hotel recently when the lift broke down and carrying the thing downstairs was too much, even though most people would find the thing lightweight.
The Four wheeler with seat is really too heavy for me. Crutches are a reasonable choice. Either crutches or a Rollator tend to help preserve your joint spaces and stop those dreadful mangled up feeling on walking. They also give people the clue that you are not likely to enjoy being squashed in a crowd, so they often mean people try to give you a bit of extra space.
Overall, for me they are worth having but not perfect. The bag on the Rollator is quite handy too.

I am fairly young looking and feel a little self conscious, and my Husband now has Arthritis in his knees so I don't like him pushing a wheelchair. I have a relatively small teenage sized one,so it isn't too bad.
As I said for me none of these things are perfect, but they are some help.
x Lola

As to the Blue Badge parking, it is a Godsend.No one has ever challenged me, and I am afraid I would probably be rather rude if they did.

 

[jellyjazz]

I use crutches for going around town or days out with family to stop the pain and lessen the fatigue. But i've also started using an exercise bike regularly to build up my muscles in my legs and my stamina...that has really really helped me and i don't find myself using my crutches as much as i was...but they are always with me in the boot of the car just in case!

I am aware though that what works for one doesnt work for others

 

[cad]

Hi All,
I saw the ocupational therapsist today, she was a lovely lady!!
She has ordered me a shower stool, perching stool which I think is a really great idea and a 4 wheeled walker with a seat. Just like the one you posted Rachel, I think.

She said to give them a go for about a week and then she would call to see if they were helping. In particular the walker as I think the others will be really really useful.

So here we go time to give it whirl!!

Take Care All

Cassie

 

[*~aurora~*]

I'm super happy for you Cassie!!!!! I really hope this gives you some freedom and happiness back when it comes to going out. I really adore both of my walkers, and the one I posted is great for shopping. One thing to be aware of is that it's a bit hard to carry up steps for me.... but compared to your other options for a place to sit and have someone push you it's definitely the lightest! It's still less than half the weight of my super duper lightweight wheelchair!

I really hope it works out for you Cassie. I'm really not sure what I'd do without my aids at this point! Let us know how they work out for you.

 

[lin]

Cassie yes we can get here on the uk from the OT, dont know what we would do without them.bed rails anoither thing we can get as well as grab rails, stair rails, yes splints, perch stools, bath seat, when i was in hospital in october the ot came to see me, they now take you to a room and access you and give you a prescription to go able world and pick up what you need, was easy too.


glad thingsa are helping you all Lin x

 

[cad]

Hi All,
yes what the OT said was that she wil go back and order the items, then the company who deliver them will call me to arrange a time to deliver them. Then when thay deliver they put them in the appropriate room so you don't have to manouver them around!! Its really great.

I must say I ma so looking forward to having the shower stool!!

Take Care

Cassie