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So on tope of the pain and the side effects from the drugs is the tedium of such a restricted range of activities. Yes I'm alive and not bedridden but I'm so tired of the few actitvies open to me. I used to wake filled with ideas excited by the possibilities for the day. Simple stuff but satisfying. I'm filled with energy but physically can only manage to walk ten minutes. It might seem inconsequential and pathetic to complain about this but does anyone else suffer this way ? I'm trying hard to see a brighter side but honestly there is only so much time in a day that can be occupied by watching a sparrow collect nesting material !

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Totally agree with your statement! That's how I used to feel until I turned it around and thought about what I can achieve in my new state of appreciation to life. I used to love walking and swimming but nigh on possibility now with my ankle that refuses to budge or if I am stubborn with it it lets me jolly well no about it. With swimming, I was able to go into the sea in October, was in Spain, with the help of my friend by taking her hand and my crutch, once I sat down in the water we placed the crutch on the sand, a then sat there with a grin on my face saying I'm in! I took happiness in that. Again with walking I push my wheelchair until my body has had enough then hubby takes over for the rest of the journey.

As to the things in doors t take it slowly with plenty of breaks in between times to accomplish what I would like to do. Not sure if this is what you are referring to but at least I have given you something to chew over whilst you are sitting and contemplating life. Another thing I did at the beginning of my new way was if I achieved a new thing one day took the rest of the day off to allow my body to rest and listen to what it was saying. If it said that hurt then the next time allowed longer for that specific item. Best go sounds like preaching, don't mean to. Take care.


Thanks for the reply. I do understand about achieving one thing at a time but I've not been more than 15 miles from home in 8 months. Good to hear such a positive attitude though. Take care


Keep fighting and thinking your way out of this impasse deejames. I can't quite get my head around the fact that this might be a lifelong battle - my little brain can only handle the here & now plus a few months at best! But something inside me is constantly on the case ..... looking for ways to keep using my energy constructively / entertainingly, in the 'paced' chunks available to me. Thing is, nobody's really going to help us with this - we have to get creative & stay determined. And desperately wanting to live life to the full is the starting point I guess.

I'm not preaching either. I fail constantly. But ultimately I'm damn well going to get there and hope you do too.


I don't need to as much now as can get out and about, but I used to rely a lot on the Internet. So I'd do things like say 'today I'm going to Madrid' and then go online to the virtual tours of the museums, and street view and webcams and so on. And cook myself a typical meal and basically see if I could do -as much as I could of the things I'd want to do if I were actually there, even to sending a postcard or two! Basically it's about trying not to feel as if you're surrounded by 4 walls.


I like that idea very much. But I'd still have all the energy. Who can suggest something for that


When I was at my worst I had zero energy, so never a problem for me. My problem was summoning enough to get me from bed to toilet! Only thing I can think of is to get a one off home visit by a pilates teacher, to work out a 30 minute routine you can do whenever energy bubbles up.


Can you cycle... I have my bike indoors on a turbo (they don't have to be expensive and are easy to set up... Try Halfords) and I do short spurts on that (my original issue was with an eye problem and the turbo has helped my to feel active without going out into the cold and I can go on it as many times in a day as I like.... Not often enough in the past month or so).

Pilates is a good one and I do that to a video programme when I feel like it.

Is there a new skill you could explore.... I found sketching settled my eyes down so for the first time in my life I've enjoyed this and a little watercolour exploration - I'll not be opening a gallery any time soon but I do get a real sense of satisfaction when I've finished a sketch/painting. I managed to get some tips off YouTube to develop my exploration of these mediums so there is no class to pay for and get to.

All the best



My trouble is that nearly all physical activity gives me additional pain. Even small distances walking is now hurting a lot. Walking was my twice daily pleasure.

Sitting hurts after about 10 minutes. Lying down hurts .

It appears that each time I modify what I do, or find something new ( like learning Spanish) that becomes a difficulty too . I don't go out much as driving is fairly torturous

I didn't want to get into this litany of 'can't do's' but there it is. I'm even thinking about not going to see my granddaughter today ,on her birthday , because of the driving and inevitable crouching down to look at her toys .

Yet inside me is the drive and energy to get on my mountain bike, haul on the walking boots ,dust off the Pilate's map and pour out this welling" dam of fustration.

Possibly all the medication is rendering me more fragile emotionally . its feels as if there is no joy and excitement possible now and in the future. Just more of the same painful tedium.

Cooking is good though. 😕


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