Would it be giving in or up?

I've had Fibro for 20 years now, and coped with it as best I could, worked until a few years ago when everything just hit the fan and I couldn't cope any more and was always ill. Since then I've been on IB and now ESA and receive DLA, and I liked to think I was coping pretty well. Lately I've realised that my life is incredibly limited, but thats at least in part my own fault!! I rarely go anywhere, but always with my husband when I do because he can drive me, and I've lost confidence in walking on my own. Anyway it HURTS! I've got a manual wheelchair which we bought for holidays and going to big exhibitions etc where there's just too much walking, but I can't propel it myself because my hands and arms are just too sore. I also have a scooter I never use because I can't get it out of the garage without help, and anyway holding down the lever to propel it hurts as well. I can only get it out when himself is at home, at which point I don't need it because he will take me. I have tried to keep walking - am afraid it may be use it or lose it - and am working with a physio, which doesn't seem to be producing results, and uses up too many spoons. The bald fact and bottom line is that I almost never go anywhere, and am becoming STIR CRAZY!

I've seen a power chair which would be perfect for me - if I could afford it. Can't use my DLA to fund it as our car is motability so no allowance left to buy one. I could probably borrow the money except for a mental block - would becoming a regular wheelchair user be a whole new lease of life, or would it mean I was giving up? Maybe this is all to do with a bad attitude to disability and false pride, and I know I do this "isn't it marvellous how she copes" thing, which doesn't reflect the reality. Sorry, I know I must sound like I'm rambling .... but I need perspective on this.

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  • Hi, I am still trying to walk around despite the pain, feel just the same as you stir crazy being stuck at home but refusing to use a wheelchair. This means I have to go were others want to go and I tire very easily, its a bit silly really because one of these days I will take a nasty tumble up till now I have mostly had soft landings, although it is a long way down from six foot. Unfortunately for me I have a lower spinal issue from an accident years ago and sitting for any length of time is just as much agony as walking, so I too do not know what to do, and have no support from doctors or physio, after 14 + years (I've lost count) they seem to have given up and just told me to accept things as they are. Having been career minded (a workaholic really) I am really struggling to come to terms with the drastic changes that are occurring in my life and feel very lonely despite having a great family. I got upset at Fibro meeting the other day when nurse just said I had to accept it, I feel this is giving up, so like you I do not know were the fine line is between giving up and accepting and going with the flow. Wish I could help, but you are not alone in this quandary, you can only do what is best for you. Gentle Hugs and light.xxx

  • Hello I have a problem like this ,I can make it round a supermarket very slowly by hanging on to the trolley for dear life. my hands and arms are too painful to use sticks but with a trolley I can lean on it with my forearms. the trouble is that I can`t take a trolley everywhere I go. I have tried the scooter they provide but was in agony on my back arms and hands. An ordinary wheel chair is no good I can`t use my arms to move it and my husband has to use walking sticks himself and can`t walk far. so for now I`m stuck with just shopping once a week. If I get pip I will have to look into alternatives. A new battery for me would be nice, though, im not sure where my battery compartment is to fit it. :P sue

  • no, it's not rambling. You have described the circumstances succinctly.

    No it would not be giving up. I would call it adapting to a new "normal". I just wonder if things in the garage could be arranged so you can get out the scooter alone. I cant see your garage but I wonder if it's possible to evict the car for instance - or is that a step too far - so the scooter is at the door facing out when you need it. It's times like this I have sympathy with Sue's idea of a wonky battery and a wonky charger rather than spoons.

    Trouble with the "isn't it marvellous how she copes" thing is no one actually offers to help when you could really do with it.

    Keep walking but when your body says "stop" then stop. Try not to plan to do more than you know you can do. I know that's not as easy as it sounds. Jus keep doing as much as you can and accept help to get over those bad patches.

    I keep rambling about my man flu but I keep a week's supplies in like UHT milk and when I really cant face going out, I don't have to. Tins and UHT aren't best but it's a life saver on days like today. I stock up on basic cold remedies in autumn - they have plenty of shelf life - so I don't need to go out or wait till the shops open when I need a bit of self administered TLC. I had stores in for 3 months when I had my knee done. Worked a treat.

    Hope that helps. Gentle scented hugs and DONT GIVE UP :)

  • Don't see it as giving up or giving in, it is simply trying to maintain some independence and making a reasonable adjustment to how you do something. Although larger in nature, its the same idea behind me buying a posh little tea cup and saucer for days when I can't hold a mug (the cup is smaller and a lot lighter) or when I bought my walking stick to enable me to go further.

    I wonder if there's a way that you can try out a powered chair to see if it would suit you?, sadly I don't know the answer to that one.

    ((((gentle hugs)))) for you

  • Hi Artyrosie

    I sincerely hope that you are feeling as well as you possibly can be today? It does not sound like you are rambling at all, you put your message across very precisely and clearly.

    I do not see this as giving up at all, I interpret this as taking back your life in whatever manner you can! And that has to be a good thing. My wife has Primary Progressive MS, and she had a similar dilemma to you a couple of years ago. She found that she could no longer walk and took the plunge and started to use a wheelchair. It has meant that she can still go out and go to work. It still limits her but it is better than doing nothing at all?

    I really want to wish you good luck and all the best no matter what decision you decide to make?

    All my hopes and dreams for you

    Ken x

  • My life changed when I bought a second hand scooter. I would look if you could get access to yours so that you don't have to rely on your husband. I can see there may be a similar problem with an electric wheelchair, you still need to get in and out of the house with it.

    I don't call it giving in, just an adjustment to suit the different circumstances. Before my scooter, we would go to the beach where I would sit on the sea wall whilst hubby would enjoy the walk with the dog along the seafront. Eventually it got so that he didn't want to do that and I realised that actually I was holding us both back by not confronting or accepting my condition.

    I get "cabin fever", particularly in the bad weather, but then I think people who are not ill feel that too. Don't beat yourself up by trying to go with the flow, just do what you can

    You are not alone in this.

    Nancy Xx

  • Not rambling at all and it was a bit of both for me but most definitely a new lease of life. You get some independence back, even though like you I require the OH to open the cellar door and put the ramp up so that I can get out and then open the garage door :O LOL but I love it, hehhehe there's a lane at the back of my house which I come out on which is a dead end and I love fleeing up and down it because there's no traffic it makes me giggle a lot :D :D :D

  • Hi Artyrose MG here. I know where you are coming from, I'm in a similar situation relying on my husband more or less for everything. Having always been very independant, now like you I hardly leave the house. Although I do manage to move about even though I'm in constant pain. It becomes depressing I know and the winter month's are the worst, and if you are like me you tend to keep it to yourself not wanting to burden your family. Like others have said I would try to make some alterations in order to be able to use your scooter, you may lay loads of money out to find the same problem with the chair. Chin up do whats best for you hope you find the right solution and regain some independance, and never mind the rambling I'm one of the biggest ranters on here its better letting it out than keeping it in. MG x

  • Thank you all for your thoughtful replies - from which the consensus seems to be that if it makes life easier and/or better then why not do it? I looked into getting a bank loan to fund a powerchair and discovered that, while they pay about 1% interest on our savings, they want 17% (!) if I borrow. How does that work?

    You know what, I'm tired of being a brave girl, and remaining resolutely cheerful (isn't she wonderful) and would quite like to dissolve into tears or make a giant scene at the doctor's surgery. I might if it didn't mean adding a headache to all the other aches! Thank heaven for a supportive community like this.

    I've made an appointment with the GP, who is lovely, and am going to ask him about NHS wheelchair services. Am also going to ask our landlord about converting the garage door to electronic opening. Two good steps towards more independence. Also discovered that I can take a powerchair on the bus - they are OBLIGED to carry you - although not a scooter. Better and better.

    PS know any cheap loan sharks???

  • Fantastic and good for you :) please let us know how you get on :) I haven't been on a bus yet in this new chair but the other chair was manual and we used to have a right carry on :o Good point artyrose, thank you :)

    and...........sorry no I dont know any! :o LOL

    :) xxxsianxxx :)

  • trains are great too - much better than buses in my opinion

  • Best of luck to you, hugs sue xx

  • Hi Arty

    I have an electric wheelchair and without it i would be housebound and very limited as to what i could do. I can stand and walk a few steps but the pain is so great it saps all my energy. I have been in the chair with fibro for 15yrs and would not go back. I have a life that i know without it i would never have been able to have - find a way - get ramps for your house and go for it - maybe we'll pass each other in the street some day xx

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