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Discussion Starter · #1 ·
Hi there,

Well, I posted before about trying to balance ups and downs - seems like I'm not managing very well as have had a very busy couple of weeks, launched my website amid fanfare, got loads done... and am now in bed unable to move. So it was stupid, and predictable, but also kind of unavoidable. You guys know better than anyone how it is. I have to admit sometime that this variable state IS my life.

What I'm wondering is whether anyone has any suggestions for mobility aids for the short term. When I'm ok, I don't need anything to help me walk, but at the moment I am so slow and sore and stiff that I find just taking my daughter round the corner to her playgroup really difficult. Having to stand (eg when picking up my son from school or at the playground) is also really hard. I get really dizzy and just so exhausted, apart from the pain. I have a 3-wheeled bike which is great for the school run, but only for use on a road.

When I'm on an up I don't need it, but when i'm on a down I long for a mobility scooter or a frame or something. Any ideas of something small that I could tuck away when I don't need it? It would have to be easy on the hands :)

xHatty
 

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Hello Hatty :)

Sorry to hear that you're feeling those aftereffects of being so busy. I'm in the same situation today after a more "normal" day yesterday. Now by normal I mean I got up at 10AM, drove my car the the garage at 1PM (did nothing in between), went on with hubby in his car to do a weekly shop (been about six months since I could last do one) and then came back and collected my car before going home. The dog had shed bucketfuls so I had to sweep the floor (even while doing it knew this was going more than a step too far), then had to walk the dog... Today I got up, stayed roughly vertical in the sofa for three hours before falling back into bed and into a coma-like sleep for three hours :(

Anyway, that's all slightly irrelevant to you other than, yes, we do understand and even those who pace a lot (like me) get it wrong.

As for mobility aids, I have the same problem. I can walk OKish most of the time but really can't stand at all (yesterday was the first time I managed a cash desk wait). I haven't really found an answer as I can't quite get my head around using a rollator thingy with a seat when I can actually walk... I think that would be what's easiest on hands, easier to use on your own than a wheelchair and still has a seat.

hugs :hug:
Katharine
 

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Discussion Starter · #3 ·
Dear Katharine,

Thank you for your answer, and poor you! I have definitely got a lot to learn about pacing myself: and yet sometimes I suppose it is worthwhile. I don't feel grown up enough to be sensible all the time, somehow. The hardest thing is with my friends: I have some who see me at my worst, but many of them only see me at 'good' times so simply don't understand the variation in my life, or the choice I am making when I do something 'energetic'. When I'm bad, I'm inside and invisible! I think your disease level is more serious than mine, but I'm sure you know what I mean.
A suppose a rolly thing is the only option, but somehow it's rather horrible. If only they made pink and silver ones, now that would be nice. Maybe you can customise them, sort of 'pimp your rollator'? Hmm. They do now make crutches in red here, which is great, but crutches and small children do not combine!

Here's to recovery!

xHatty
 

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Sounds like a good idea a "pimped" :rotfl: rollator

As to what my disease activity is or isn't like... these things can't and shouldn't be compared. Everyone's suffering and problems are important.

hugs again :hug:

Katharine
 

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There is such a mental stigma about rollators, but I love mine. It really helps with my balance, I always have a seat, and it also has some storage. It is the best purchase I have made to make my life easier.

Mine is a pretty royal blue. Most of my clothes have blue in them so people tease me about even color coordinating my rollator :lol:.

Take care,
Lazylegs
 

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I agree with Lazylegs that the roll e thing a ma giger may be best for you.

I am sorry your having a tough time but know that your not alone.

If I have a busy day then I am not good for days after that.

Gently hugs to you hatty.:wink2::wink2::wink2:
 

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Katharine;549553 said:
I can't quite get my head around using a rollator thingy with a seat when I can actually walk... I think that would be what's easiest on hands, easier to use on your own than a wheelchair and still has a seat.
Katharine, I have one and thought it would be great, but my hands and arms get so painful and tired using it that it isn't as much help as I thought it would be.
 

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Discussion Starter · #9 ·
Thank you everyone!

It seems you can indeed 'pimp your rollator' - I've discovered a site here with pink ones, and sparkly ones. I've also discovered you can buy them really cheaply second-hand. Unfortunately my husband point blank refuses to let me have one. I do see his point, of course: he doesn't want me to look or feel disabled. I think he might accept me having an (elegant) stick, but not an 'old person accessory'. He is lovely, by the way, so it is with the best intentions. Oh well, here's to hobbling around. As if that were glamorous. It's always that thing with lupus, that on the outside I look really well (esp when I have a malar rash, lovely 'pink cheeks' :) ) however sore I am on the inside. I can see that he doesn't want me to wear a badge of disability, but still. Poor man, he married someone 10 years younger than him, and she's longing for a rollator :)

xHatty
 

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Brenda
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Take this in the nicest way, please, but if a rollator would help you... does it matter how you look to other people? When you see a "healthy" looking person using a walker or wheelchair do you judge them? I doubt it... so don't worry that they will judge you. Please use whatever you can to make you feel better.
 

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Thirty years ago I was told that "within five years you will be in a wheelchair for the rest of your life." I replied that if I must use a wheelchair I want it to have "racing stripes, tail fins, and preferably a V8 engine!"
No wheelchair yet but if the time comes... beware my 1959 Cadillac fins!
It's all in the attitude.
That's why I have such beautiful walking sticks.
All the best,
Douglas+
 

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When I was 43 I had to break down and get a walker. I decided that if I needed one then, I was NOT going to use a "nursing home" type. I got one that is blue, had the seat to fold down, a basket to hold things, and I always had a chair at hand. I used it for a few years, but then improved enough that I didn't need it. The quad cane I got is a nice bronze color, not the silver usually seen. I got that from a physical therapist I was seeing at the time. I don't often need help anymore, but if I do, will get the walker out and use it.

I don't understand why your husband would object to using aids to help you function properly. It does not make sense to me. I celebrate that there are aids to help us make our lives as normal as possible.
Sally
 

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hiya

my sons girlfriend has a walking stick which opens up as a seat so she can sit down to rest. not pretty but Im sure you could spray paint the seat pink :lol:

I have a stair lift which helps when Im bad.

Its weird how u have to think things like how far can I walk and are there seats to rest at places.

Do you have a friend or mum at the school who could pick your child up when you are bad?

Take care

dixy
 

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Discussion Starter · #14 ·
Compromise reached... I have a really great walking stick, sort of curved with a cushiony top. It's hard on the wrist but ok as long as I swop sides often and wear my splints. Gives me the confidence (although no seat, at least I can lean on it) and a bit of extra support, without being too conspicuous. Husband happy with it too :)

x Hatty
 

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I have a shelaleigh, hubby saw One in Ireland many years ago...so when I started having trouble he went online and ordered one...it's really beautiful...all crooked and knobby, with a nice finished ball at the top (he put some moleskin on it so I don't bruise my hand leaning on it.

At times I kinda wish it had a seat...LOL but leaning works most times.

I understand where your hubby is coming from, mine was the same way, but did agree that I needed whatever I needed to have a better quality of life, but that it should make me feel special not invalided. If I ever need a wheelchair (please not for many years) it too will be a hot rod, maybe with a side car for the dog...teehee...

Stephanie
 
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