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here I go again...on me soapbox

Allo dear friends, from the title of my post, some of you will yawn and say, Whats Boudica on about now?`

Honestly, I really do mean this with the kindest and most caring of intentions.

There have been several posts lately from some of our members who are having a worse than usual time with their decline in mobility.

My own decline happened rapidly and I went thru the angst of using a wheelchair for the first time.

In fact the true first time I acquired a wheelie, was when we were on holiday. I was falling every day, dragging myself around, feeling rubbish and hating myself.

I went to a Red Cross office and hired a self propel chair and it was put into my car boot for me.

I got back to the campsite and my hubby saw the wheelie and we just looked at each other. He looked annoyed somehow, so guess what? That chair never came out of the boot all week and I took it back. It was never spoken about.

12 years on, I`ve gone thru quite a few manual chairs, power chairs and made mistakes…expensive ones.

Now I have an electric tilt in space, reclining wheelie. it`s good, but is costing me £102 a month on Motability. The local Wheelchair Services had such a massive waiting list, that I couldnt wait for an upgrade on the last one they gave me, and I kept slipping out of it!

So guys, my message here to those of you at that horrible crossroads of shall I? or shant I, go for wheels? is do it, it`s tons better than falling, using precious energy dragging your selves around and missing out on so much.

I promise you, you`ll be glad you did in the not so distant future.

luv to all,

your gobby mate Polly aka Boudica…you can see how I got that nickname, eh?

xxxxxxx

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Ahhhh Poll. What a lovely thread.

I am at that stage like a lot of us here it seems.

I am missing out on loads at the moment. One thing I miss so much when we are away in our caravan is walking along with hubby and Charlie on the beach and watching him run and chase his ball (Charlie, not hubby!!!). Hehehehe. Couldn’t resist that one. Also, falling when trying to get to the car when I can’t make it.

I am definitely gonna invest in a little wheelie to keep in the car. I will have to bling it up though.

Thanks lovely Poll ((((Hugs))))

Shazzie xx

yes time has come for me too but its got to be the hardest thing to admit to yourself that you cant manage without some help anymore ,i went from stick to walking frame and can only really manage 20 yards with that , so if i wont too still have some enjoyment outdoors i need to give in and let the wheels do the walking .

Take care all .Katy

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Hi Polly

You’re so right!

I started using a wheelchair Very early on because it enabled me to keep doing things. At first it was just on long, strenuous outings but I’ve come to rely on it more as the years go by. I can still walk but I get short circuit fatigue and my legs and back, apart from feeling painful, become unable to hold me up!

I sometimes think of all the things that I would have missed out on without my wheels and my very kind husband and sons. I’ve a self propelling wheelchair as, even though I’m not strong enough to wheel myself, I can manoeuvre my self a bit so at least I have some control over which way I’m facing when we stop!

My big hurdle is being brave enough to hire a Shopmoblity scooter so that I can go shopping with my sister when my husband is at work. I terrified that I’ll run someone over

x

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Poll I have an electric wheelchair after I developed rheumatism in my wrists fantastic it enables me to join in family stuff and much to the annoyance of my family tell them my Jokes

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good post Poll,once you get over the pride thing,a w/c or scooter enables you to get out there,and not miss out anymore,thing is i cant even do that nowdays as just going out tires me too much,even sat in a w/c you use energy,and i just dont have enough energy to sit up.

J x

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Hi Polly

A well thought out post, I agree with you that to get around with others is a priority, my mum only used wheelchairs on holidays and once on a seaside trip, memorable as it was the only time she didn’t stay in the car.

I have one large and one small buggy, a manual wheelchair and an electric wheelchair, I am determined to stay independent and using a machine that will enable me to go shopping and on outings with others meant that a decision was easy to make.

One of my friends is in his late 60s has had ms for well over 30 years and has just bought his first buggy for outings, he can walk but it means he won’t have fatigue following a Sunday outing that affects him the whole of the next week.

Wendy x

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Thought I would bump you back to page 1 Poll as this post will be a massive support to others.

I am gonna go out today to look at little buggies for our hols to the seaside in 2 weeks!!

Shazzie xx

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hi poll.

yes a well though out post.

for me its made me realise just how isolated i am from these boards nowadays!

thats not so bad because we are all trying to deal with our own issues in our own way-i have always said that!

but reading through the replies you all seem to have the choice. that was removed from me. within 48 hours i was doubly incontinent (had previously had bladder issues), unable to communicate, total right sided weakness, lost sight in left eye and the worst ever emotional lability!

am sure others may have experienced similar and have made drastic improvements as is the ‘normal’ nature of relapses. however that was 3 years ago and i now have no driving licence, cant volunteer as i previously did,have carers in to help with basic stuff-total change!

please dont think i am bitter! cos i def aint! i have been told (by several!) that i am annoyingly positive! as far as i am concerned its the only way to be. being positive doesnt make ms go away but it def helps my frame of mind to cope with it all on a daily basis.

i have managed to type this using one finger and one eye! i have laughed and cried throughout typing this-not because i am upset but thats the way it is and i accept the uncontrolable emotions, let them go cos they are not my fault.

i would suggest that folk try a wheelchair-especially a powerchair-it does take some practise to be confident in public!

i can understand the questions of when to use one-the reasons are clear in the replies.

try it-theres worse things-like incurable ignorance

ellie

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Well, thank you all so much for replying and saying my post was well received.

Choco…I know you’re not bitter hunny.

Here’s a funny wheelchair story for you.

A few years ago, I was going to the pictures with my sis and I was in a manual chair.

We got into the building OK and sis sat in her seat, a bit puffed from pushing me. She smiled and said how much she was looking forward to watching the film.

I left it a few minutes, then said to her, ‘Yeh, me too. But do you think you could turn me round to face the screen, please?,’

True story!!!

Luv Poll, enjoy wheeling around everyone xxx

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Sorry to be late to the party Poll but I’ve had trouble posting.

you know I will join in any thread that puts a positive spin (excuse the pun) on wheelchairs.

There is a common feeling that using a wheelchair is giving in to MS. I don’t wage war with my MS but I do try to live life despite it. To me NOT using a wheelchair would be giving in. I would be giving in to a life behind my own front door, accepting that reduced mobility and crippling fatigue had all but finished me off. I have powerchair from wheelchair services that allows me to get out on my own. Meet friends at the pub, go to visit my daughter, go shopping, get involved with local community groups, go to yoga…the list goes on and on. I don’t have a mad social whirl, much of the time I’m at home nursing my fatigue but I get out once or twice a week.

Before I got my chair I used to worry endlessly about simple things like drs visits. Could I get from the taxi to the door? Would I fall down and make a ninny of myself etc etc. Now I just GO!

its not an easy decision to use a chair - I understand that but my beautiful forthright daughter summed it up so well:

“Mum you’re not fooling anyone into thinking that you are not disabled. You walk like a disabled person, you might as well go in a wheelchair and be comfy.”

There are no medals for struggling on crutches, you won’t make the disease go away by falling down and you sure as heck won’t live a full life on the sofa wishing you were out and about. Believe me it’s better to glide than stumble.

Jane

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Hi all

It’s great to know there are people out there with such healthy outlooks on things.

My story was very similar in that I first got a manual wheelchair to get to the pub more easily (priorities) but I only used it out and about. Somehow in my head using it indoors seemed like some kind of giving in.There is definitely a balance to be found between not using your leg muscles while you can and doing more in a chair. I did eventually start using a chair inside when I was falling far too often and barely moving, but I was not happy about it. Then my wonderful other half pointed two important things out to me.

a) it’s not walking from A to B that matters; it’s getting from A to B

b) knowing what a slob I’ve always been ( can’t blame the MS for that - it’s always been true) he pointed out that in the wheelchair I was more mobile and could leave a mess in more places!

Sam

X

p.s. I love the cinema story

Hi Jane and Sam, your stories add weight to my endeavours in trying to get folk to understand the benefits of getting personal wheeeeeeeeeeelies.

Thanks.

pollx

Poll,

Love it when you’re on your soapbox, means you’re up and about!!

Started using mobility scooters about 2 years ago when in different cities to where I live ( didn’t want to see anyone I knew)

Bought a little scooter a year ago but hardly used. Think I’ll have to start using it as I can’t walk very far and I need to get out.

Last week I arranged to meet a friend for lunch in town. Hired a mobility scooter, bit nervous as to what she would think or say. She thought it was fantastic and encouraged me to whizz round the town looking at all the new shops. Which I did.

Think we’ve all got to decide when and how much help we need. It’s not giving in it’s living!!

Loved Jane’s comments, my daughters are the same. ha

Jen

x

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Jen i am just the same i wont use my scooter locally at all,i dont want anyone who knows me to see me,it doesnt help that my daughter in law looks down her nose at my stairlift and scooter,she makes me feel like i shouldnt be using either,but she is a snooty one lol.

J x

If those people you don’t want to see you on a scooter or wheelchair or whatever aids you use and need, were asked which they would rather see eg you in a heap on the floor with nasty injuries, or your smiling face, relaxed and enjoying an outing?

I bet I know which answer they would happily give!

Come on guys, lose those self damaging thoughts and get out there…life’s too short etc!

Pollx

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Hi Poll - please stay with your soapbox, it cheers us all up.

Sadly last year I had to sell my beloved Saab convertible as the ignition key was down by the handbrake well, and had not been able to start it with my left hand for a while. Then embarrassingly, I was often having to ask neighbours or even guys at the supermarket to turn it for me, as my right hand was also failing.

My wonderful son had been threatening to buy me a mobility scooter for ages, so I made a huge positive out of selling Julie (the car) Firstly I bought two new sets of bedding (have to change the sheets a lot - sure you know why) really expensive 600 thread, love sleeping in such luxury. Then bought a second hand mobility scooter. I am a bit off the wall so had it sign written all over with ‘La Rubia Peligrosa’ (The dangerous blond) - Love it, can get a full shop on it. Go to the disabled gym twice a week (4 miles each way) as the nearest bus stop is too far for me to walk. Off to the MS society in Southwick, (near Brighton), it takes me over an hour, but heck the fresh air is good for me. Even passed my test to take it on the buses, bad sadly they are usually pretty full by the time I get on.

Regularly go by Train to the hospital, Southern rail are brilliant. pre-book and they have a ramp ready and waiting both ends. Even taken it on Monarch when I went on holiday for free.

So if anybody is in doubt - just go for it - keeps your independence.

Take care one and all - Mary x

Thankyou Maryrie, for your lovely reply, full of positive thoughts, after having to say tata to your beloved Julie!

It is refreshing to hear about all the places you are getting to. And re taking a scooter on a bus and train…good for you! I take my wheelchair on, but didnt think scooters were welcome…obviously they are where you go…great news!

I am flying Monarch to Barcelona in September and taking my self propel…dont trust `em with my expensive electric chair.

luv Pollxx

you are so right Poll,and i wish i could think like you, but i cant as much as i try it annoys me that i cant,i wish i could say to hell with what others think,maybe one day… eh lol

J x

Mrs J, dont fret about it hun. Ive always been gregarious(ooh, thats a posh word for a chilly Tuesday afternoon and I`m noshing on a magnum ice cream).

as you say, maybe you will one day, not worry what others think.

but study this thought of mine;

these other folk you think are judging/watching you…what are there lives like? Do they enjoy life doing what they like, going where they want?

Or are they too blighted by self consciousness and only half living?

Please dont take any offence at my words. I just wanna see folk enjoy their life as much as poss…afterall, we`re only here the once.

luv Pollxx