Hi all,

[Susan20067389]

Over did it last week and now suffering

I have found getting out of bed a difficult and dangerous, keep losing my balance and falling over. So when I go to get out of bed I have to sit on the bed for a bit then get up.

Went out with my friend to the metro centre, to have a look at the shops. I was going to higher a scooter but couldn't afford it £30. So get a self propelled one instead, it wasn't very good rather poopy if I'm honest. Low down no cushion, heavy and when I was pushing myself it veered off to the left. Ended up jamming my thumb between the wheel and the brake "ouch"

So going to demand for a manual wheelchair from my specialist iv seen one I can get from wheelchair services. 'Quickie Aaron 2 wheelchair' lightweight.

I'm try to lose weight aswell on slimming world. It's hard tho.

Problem is my dads girlfriend has FMA and all she keeps saying is if I lose weight I won't have the problem with my hips, even my dad is telling me and I'm trying to tell him not every FMA sufferer is the same. So I'm letting them get on with it and do what I think is best for me!!

My boss and CSW (Communication Support Worker) at my volunteering thinks a wheelchair would be better for me. I can't do my dishes without being in extreme pain.

Once I have the wheelchair I'm then going to apply for high care and mobility. As my flat is aided, bathlift, high toilet seat, bed leaver, hand rails in bathroom and at front door and heightened sofa. Then maybe I can apply for a bungalow

Xx

[Hidden]

Motorized wheelchairs cost that much in a shopping area? Wow..that's

robbing you. Not a good alternative either, hey? Your incident sounds like

it would hurt. I live in the USA..our cities have rehab equipment to rent..for

a nominal fee..Is it possible that your town would have the stuff to rent

to you? I am not familiar with the charity groups there. .maybe they can

find the medical stuff on the cheap. I hope so. =) May I ask what a bungalow

is? Is that a housing unit? In America, it's a two story A frame house. =) xx

[Susan20067389 in reply to Hidden]

Hi Yikes,

We have the NHS in the UK, where sometimes you don't need to pay for equipment from the hospital, if you want a pacific wheelchair there is the voucher scheme where that you can get and it will cover the full cost of a wheelchair.

I'm not sure if we have a rehab over here, we might but I have never heard of it.

The scooter was £30 to hire/rent ($48.48 in dollars), as I didn't have that much on me I went for a self-propelled wheelchair as I get the £10 back.

A bungalow is a low house having only one storey. So everything is on the same level, making easier if your in a wheelchair.

Xx

[moonstonebright]

Hi Susan, yes we are all different in how our pain affects us so you are right to do what's best for you. my condition affects me in similar ways to the sounds of yours and I had to resort to using a wheelchair more and a perching stool to sit at the sink to wash up etc. My OT helped me by giving me a bed rail and a raised loo seat etc which helps and rails etc. I also have a disabled daughter so cant go out much because she uses a wheelchair too and we can't push each other. You have to ask for all that you need to help you and don't worry about what others say because everyone is different. Good luck!

[Susan20067389 in reply to moonstonebright]

Thanks, moonstonebright,

I might ask for a perching stool to help me, might make it easier.

What type of wheelchair do you have?

Why don't you get an electric wheelchair for your daughter? Then you could ride along with her, while in your chair xx

[moonstonebright in reply to Susan20067389]

we are investigating that but her Nerrurologist has to give her agreement as they don't want her relying on one of she doesn't need it yet. They don't think about what would be easier! it would solve lots of problems x

[Susan20067389 in reply to moonstonebright]

Try suggesting it and maybe explain the problems

Did you ask your rehumtology for a wheelchair? Just I'm waiting for my appointment and I'm going to ask for a wheelchair assessment but have told peope I will cry if I have to!

What kind if wheelchair do you have? If you don't mind me asking

Xx

[jillylin]

Hugs. We all have FMS but it can affect us all in different was so it's rather naughty of your dad's GF to say what you need to do. You know your own body best and should do what works best for you.

I was shocked at the scooter hire price, that's horrendous!

Gentle hugs

Jillyxx

[Susan20067389 in reply to jillylin]

Hi jilly,

Yeah, I think it is wrong but I just smile and don't say anything. As I would get in serious trouble off my dad if I upset her in anyway.

I no I have put on weight and need to lose it but it's really difficult with Slimming World. But when you have a bad day all I want to eat is bad things, like them new crisps called Philpeas flogs the cheese ones are so nice they melt in your mouth, so bad but taste so good :/

I was chatting to her daughter the other day and she even agreed that if it make my life easier and safer then go for it, the wheelchair that is.

Xx

[sue32]

I too know the difficulties in trying to get about. My balance is getting worse all the time and I shake a lot too!! I have a bed lever that helps me get in and out of bed, but I always sit on the side of the bed in the mornings. There's no way I could just get up straightaway!! As for losing weight, in my case, I lost quite a bit of weight a few years back, and my pain got worse!! So losing weight doesn't help everyone. Take care XXX

[Susan20067389 in reply to sue32]

Hi Sue,

Yeah my balance is going but I can't tell if it's to do with my hearing loss or not? But I have asked my friend to ring them tomorrow and to see if I can push for an appointment.

If I'm honest pushing myself yesterday in that bad horrible wheelchair hasn't hurt my arms at all I thought is be aching and I'm not, so in happy with that shows I could push myself in a self propelled chair I'd rather have a self propelled then a electric has I think I'd gain more weight that then a self-propelled as I would be losing weight as I would b using my arms.

Xx

[Hidden in reply to Susan20067389]

How do you get into the water? Is it hard for you to do?

That would be so ideal for you..the warmer water helps

you to stretch and it's relaxing. You could hold onto a

swimming ring or a life jacket even...the pounds will

continue to just melt away...and your joints will feel better.

[Susan20067389 in reply to Hidden]

Hi, I went to turkey in august and the heat didn't bother me but I could walk for miles without joint pain.

I'm going to look at hydrotherapy sessions to see if I could do that to help me.

Pools usually have lifts iv them so I can use that x

[Hidden in reply to Susan20067389]

You went to Turkey? I'm jealous. It's amazing

how we go from walking, running and then suddenly

we go down...I haven't had that in a long time. (taps on wood) Some of you ladies sound like you have some RA going on or if not that, Osteoarthritis.. If both fibro and ra have the same symptoms..ugh..

[Susan20067389 in reply to Hidden]

Yeah turkey was great fun, some people like going to hot countries as they don't suffer with joint pain. As it's the cold and weather change that can usually lead to pain and flare ups.

I have had a flare up this weekend, as I did too much last week, plus standing for 5-6 hours on Wednesday and Thursday baking didn't help either, but it was worth it as my cakes were gorgeous

What is RA? Is it rheumatoid Arthritis?

All I know is I have fibromyalgia and hyper-mobility. Along with other medical problems:-

PCOS,

Chronic Polycystic Kidney Disease, I'm hearing impaired in both ears and I have mild learning difficulties

Xx

[Allpainedout]

Hi all , I've had mobility problems for yrs as well as balance problems I get so dizzy !! If I use the escalated in a shop when we get to the top my hubby has to hold me up I get so dizzy and feel sick !! I can't go out without my husband but when we go to park in the disabled spot the looks we get because I look ok !!!! But hubby has to help me in and out of the car and hold me up all the time even then after just 30mins I've had enough and can't wait to go home !!! The people who gave me the looks are able to stay out as long as they please !!! I only walk into tesco and the sheer thought of walking around finishes me and I wait in the car with hubby doing the groceries !!! Sorry if my spelling wrong I ask my husband if I really can't think of how the word starts but the Easy ones !!!!??? I try myself but I honestly can't tell if I'm right or wrong ?????

There are so many parts to this fibro !!!! And every one is different !!! The more people talk about this illness the better it will get for us !!!! Good luck to you all !!!!

[Susan20067389 in reply to Allpainedout]

Thanks Allpaundout

Ignore that people do, ignorance is a big problem with people these days xx

[RIBBONPINK in reply to Allpainedout]

Hi i know about dizzyness just been put on medicine for it cant walk far.i use wheel chair but cant move it around, my husband does it .i get the shakes and the pain and fibro fog.weak muscles.i am on my own as my husband works long hrs my pets comfort me.i have strong faith. and try to keep positive thinking going.we are all so lucky to communicate in our group arnt we all x

[Susan20067389 in reply to RIBBONPINK]

Yeah I think if it wasn't for this website I'd b completely lost.

Xx

[Hidden in reply to RIBBONPINK]

Shaking legs and weak muscles sound like vitamin D

deficiency. Also I bet it's the B12..but maybe it's just

fibro...Our doctors have to start with the basics..the

testing is cheap.. Ribbonpink, I had the shakes from

pain after my leg broke 2 yrs ago on the soccer field.

[RIBBONPINK in reply to Hidden]

hi yikes/i get shakes after walking,pain every where,had fibro for four years now.going for more physio soon.i use wheel chair cant walk far.are your gps good in states?

[Hidden in reply to RIBBONPINK]

Oh my gosh..I cannot believe that you have to

live like that in that much pain...

Our doctors are numerous over here..we can

see pretty much any doctor who is willing to

take on more cases..We have our clinic doctors,

grocery stores have doctors on duty, there are

specialists all over the place..We have it good

at the moment but the big question comes into

play when Obama care gets going...I am going to

keep my private insurance..there are too many

unknowns yet...everyone ends up going to physical

therapy for all of these kinds of diseases..I don't

think that anyone who has any insurance for health over here would put up with that much pain..they do take the human rights to live pain free pretty seriously

over here...doesn't mean that narcotics are easy to

get, it means that the doctor will not put you off until you are living at a comfortable pain level which is

below 3 or 4...to live with more than that seems like torture..I am so sorry for you..My hugs don't seem very helpful...come over and I will adopt you as my sister..?? I feel so bad for you right now. Please get some rest if you can..<3

[sue32 in reply to Allpainedout]

I empathise Allpainedout!! Walking around a supermarket fills me with dread, even with a shopping trolley!!

[Susan20067389]

Hi,

Yeah iv seen on tv shows that USA have houses with basements, I watch 'extreme makeover home edition', love that show.

But I don't think many houses over here have basements.

We don't have insurance for our family as our medical bills are covered by the National Health Service, if your on certain benefits the you don't pay for prescriptions, Optinions and dental care, but if you are working then you will be charged. But going to the hospital doesn't cost.

I'm not looking forward to winter it's only autumn at the moment and it's already cost me on my gas, I have a card that you put money on, it's good but I will have to put more on as I seen to be using more gas the colder it's getting :/

Xx

[Gramma]

Just like to share, I visited an outdoor museum last week and was offered a motorised buggy to get around for free!! Didn't use it as it happens but it's nice to know.

(Hutton le Hole, North Yorkshire Moors).

[Susan20067389 in reply to Gramma]

Thanks for sharing x