Hi everyone, it's been ages since I last made a post.
A lot has changed, I now have a wheelchair to help me get around though I only use it when I need to. My dad understands I only use it when I need to but his partner is very much against it. But all I say is that if I have a bad day it's safer for me to be in it then to keep having falls when I'm out or when I'm around my flat.
So I have used it in my local town. I laugh when people give me funny looks as I just make it fun, going down a ramp arms out like a aeroplane and I sing to my friends I believe I can fly!!
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It sounds to me as though your are being really sensible it is much better for you to use it on your bad days than risk a fall and if it makes the difference between you being stuck in your flat or going out I think it is a really good thing. Sounds as though you are having great fun when you use it. x
Yeah, I have just rang my GP as I have a lot of lower back pain at the moment as it's very sensitive to any pressure, even standing and sitting is extremely uncomfortable so I am going to go in my chair and put a cushion behind my back to see if that helps. not having much luck at the moment
Yeah when people say I'm disabling myself by putting myself in a wheelchair, I say Aww right that's your opinion. I think I no what's best for me thanks. xx
I think it's brilliant your using it just when needs must and positive about the situation.
Be careful that it's not the chair hindering your back though. Self wheeling a chair can put strain on areas of your body (presuming not electric wheelchair) & be prepared for your Dr to consider this.
I use the wheel chair sometimes at the hospital when I need to get a long way to the department I'm going to. My body won't sustain any distance like that.
Yeh. I have just been to the doctors today as I have a bad back and he has told me that if nothing comes up on the MRI scan then he isn't going to do anything else about it
He isn't a very nice doctor. So I'm going to speak to my dad about it tonight and I'm going to see what happens after and if I'm still in pain I'm going to keep nagging them until they do something about it. As I saw someone a few years ago and I remember him saying that I needed to lose weight on my back before he would do surgery. So I'm in pain and he won't do anything what's so ever. I think from now on I will just avoid seeing him all together.
He was questioning me who have me my wheelchair and where I got it from!
Xx
I love my wheel chair, no more sitting in the car while my family were enjoying themselves.
A trip into town is possible now even though some shops dont have access.
I have battery powered because of the pain in my arms and back dont allow me to use a scooter or self wheel.
whatever it takes to take part in everyday life. so dont let anyone put you off, and yes i get funny looks when i go` wheee` down ramps or round corners,
Haha yeah it's fun going down but not so fun going up hill.
The only concern I have is if I don't use my chair all the time they might not allow me to have an electric wheelchair. So that's my only problem and concern. As if you have to buy them I don't think it can afford it.
I could always ring my local wheelchair services up and ask for some advice and see what they say?
Hi. I rang my local wheelchair services and I mentioned to them I have really bad back pain when pushing myself and mentioed a back support. So they said there going to pull up my file and get me in for another assessment.
Do you think I could ask about a electric chair? Though I'm not sure if
No harm in asking. My opinion is you should get one even if you use it part of the time. You wont be expected to use it in bed and if it helps quality of life I can see no problem. As a non user my opinion is just that.
hi, ive just started to use a wheelchair sometimes, i got it a couple of months ago. i still feel a bit self concious in it but then il think to myself why? if it means im able to go round shops & on family trips then that's fine. as long as i have someone with me as it makes my arms, shoulder & neck ache. it's so good to go out & not get home with agonising back, legs & feet then being laid up for a week. x
Yeah. I no I have that same problem especially with the pavement not been very straight.
As I have found with my chair of my wheels can't get over a bump I stop dead and slide forward in my chair.
I think what I might do is wait to see if my bad pain continues and if it does I might ring the wheelchair services up and ask if there is any back support I can get for my chair to see if that helps.
As I have also seen people in self propelled wheelchairs but they have what looks like a little motor on it to give them a little bit of extra help xx
i know it's embarassing at times lol. i nearly went into a low market stall a few weeks ago! the pavement was slanted. i think i got the wrong chair tho as the one i bought said lightweight & easy but its ok in a mall but a lot harder for me to do myself outside. if i get my dla tho im going to get a little scooter for shopping trips etc. im sure you can get a support cushion for your back, i know you can get cushions that cover the seat & whole back of the chair. mines self propelled but i havn't seen any motors for them only on electric wheelchairs? xx
So? I know so called "normal" people who walk into things . No prob there with you. When I see people manoeuvring trollies in a supermarket I sometimes think "they must have driven a car here - gulp"
Aww right thnx I'm currently stuck in bed cause of the pain :,(
I'm thinking about mentioning a electric wheelchair in my next assessment as I rang wheelchair services yesterday about a back support as I'm getting a lot of back pain xx
I sincerely hope that you are feeling as well as you possibly can be today? I think it is a good idea to be aware of our limitations and have health and safety close to heart. I normally use my tri-walker to go out but if I am feeling particularly tired or weak then I use my electric scooter.
I want to wish you all the best of luck and I hope that you enjoy your wheelchair and have good fun!
Yeah, I am feeling a little better but no matter how much sleep I get I am feeling extremely tired when I wake in the morning. Which I think is related to FMA?!
I am having to reorganise my flat so I can get my wheelchair thru to my bedroom. The only problem I have now is that I got a dryer for Christmas/Birthday and because of where we have put it I can't get my wheelchair into my kitchen anymore. So I'm thinking about putting it in my sitting room once it's sorted
But I can only do little bits at a time. But now I have a bad back I can't do anything at all I took my pain kills last night and they did nothing for my back pain and my GP who I saw yesterday is refusing to give me anything else. But he is the one who has also changed my medication for my CPKD (Chronic Polycystic Kidney Disease). He took one of my fentanyl patches off me and is refusing to put it back on my prescription. So I am going to ring my Kidney consultant and ask for some advice as I feel like it's a punishment because even tho im in pain with my back to the point I when to my appointment in my wheelchair cause walking is too much and I had a fall trying to walk to get up from my bed. He isn't a very nice or helpful understanding doctor.
He even questioned me on who gave me the wheelchair and where I got it from. I was like the OT from Sunderland. So I hope he doesn't try and take it off me... Can he do that?
Hi Ken, can you get access to that leaflet on expert patients etc? I cant get into the mother site (probably dodgy internet - so everything about Badger is dodgy)
There is an element of "disabling yourself" but honestly I cant go with that. If it means you get our more and live more then surely it's liberating. I don't use one but have had my moments on crutches and in a cast. I've had to plan even short walks to coincide with seating and have wished for a strategically place seat somewhere, so I can understand a little. There's a guy near me who does the aeroplane thing on a path by our supermarket. He gets up quite a speed and actually if he came a cropper he'd be really hurt. However that risk is really low and well worth it.
Yeah I used to use crutches but then I would get a lot of pain in my wrists and found out it was carpal tunnel, so I had to stop using them for the pain in my wrists.
But my dads partner is trying to get me to use a walking stick but I'm trying to explain how is that going to help me if/when my legs give way, surely I would hurt myself more with that in my hands.
But I have found standing and walking to be very painful in my lower back when standing and walking. But I'm concerned because my GP is sending me for a MRI scan and says if nothing shows up then he isn't going to do anythin else?!
So if nothing else is done I'm going to have to nag the hell out of them I think
Keep nagging but gently. Make it plain that you are engaged in your condition. Drs usually react well to that. I cant find the link for Fibroaction's information on expert patients. I've asked Ken if he can see it. There's a lot on the mother site but for some reason I cant get into it. With your multiple conditions whatever you do will have to be tailored to you, and some (like carpal tunnel) just complicate things. We'll get you there - somehow. I would normally remind you we are not health professionals but it looks like you don't have a lot of confidence in your GP.
I think I had the back pain before I was diagnosed with FMA. As I remember him (the consultant) saying that if I lost weight on my back that they would do something about it. But it was such a long time ago. That when I told my doctor he just gave me a look as to say what ever
The pain in my back is getting a lot worse to the point I have pins and needles at down the leg and to my foot and my medication isn't working. I can't go to my doctors as there shut all day for training xx
My doc asked me the other day if I take paracetamol I was like yeah he said well I'm not giving you anything else.
As I'm on 900mg of Gabapentin a day, 8 500mg of paracetamol a day and 25mg fentanyl patch. I used to be in 12mg fentanyl patch too but my doc is refusing to put me on it. I was furious when he took me off it as the fentanyl is what I take for my kidney disease and he is changing it without consulting my kidney specialists xx
We all need a little help, I think your attitude is great. If the wheelchair is what keeps you going and out if the house! Go girl, just watch where your flying, lol
I do the aeroplane thing too! I've decorated my wheelchair too, so that it also makes people smile as well as the loony driving it!! It helps people to realise that you're not some alien being who requires their sympathy, but a normal person just like them who happens to use a chair.
We were doing the flying thing in a huge shopping mall in America and a man stopped us and said, I don't know who you are but I like your attitude. Its the only way to be really ... you can be sorry for yourself or get on with making the best of life.
It does take time but the people around me now understand that, while I CAN walk, if they see me in the chair it means I'm having a lot of pain that day. Maybe your Dad's partner is one of those people who see a wheelchair as "giving in"? I did for a long time, and tried to keep walking because I was afraid if I didn't I'd lose the ability, but its not like that is it?
Incidentally I have a chair with a special memory foam seat and back, because its the only way I can be completely comfortable. Sitting in my manual chair always hurts after a short while.
Yeah she must think that. But then if I say I'm bringing my chair out with me she sometimes refusing to come out with me, it's as if she is embarrassed to be out with me while I'm in it :s
No I don't believe I've lost any ability at all with using it. I have just rang PIP yesterday to let them no I have a change in my circumstances, so they will know I used a wheelchair that my mobility has changed and is getting a lot worse like, I have a bed leaver to help me out of bed, I have a higher toilet seat, bath lift handrails in my bathroom and at my front door, higher sofa, purtching stool for when I'm in the kitchen and a little trolley on wheels so I can put my stuff on that and wheel it to the room I'm in so I can't have to carry it. I think they gave it to me incase I was carrying something hot and my legs gave way I don't seriouskt hurt and/or burn myself.
good for you susan!! ( perhaps you can get someone to adapt it like chitty chitty bang bang!!) I have a wheelchair too it is a manual one though as I have a damaged rotator cuff on the left so if I had one you self propel I would be going round in circles!!)
I have wheelchair since 2003 , I don't care if people stare, if they are staring at me (or you) they are leaving some other poor sod alone!!
I also have had a mobility scooter since 2005 ,and wouldn't be without it
don't take any notice of what your dad's partner says ,this is not their illness it is yours!! his partner should be thankful it isn't them who have to try to cope with this, so you go girl ,you fly!!
I can see you doing it now , you could end up on the "your so money supermarket" advert ,flying along with your arms stretched out!!! I shall start watching in the ad breaks for you on the telly!!!
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not having much luck at the moment 
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