Vasculitis Poll

[Derek]

I just get frustrated at times purely because muscle wastage and nerve damage limits my activities, particularly doing DIY and trying to keep reasonably fit.

[orsen-trapp]

I can relate to that, despite being a 'Mrs'. Got my muscles back but they're no use when the fatigue hits. Used to be able to do heavy gardening all day along with indoor and outdoor building work; now both gardening and DIY are limited, wallpapering (I'm better than my husband at that!) and painting out of the question. Sitting here at the computer as an alternative to going back to bed as the MTX hit me hard this morning. All I can suggest is celebrating smaller achievements and tell the frustration to take a running jump

[Derek in reply to orsen-trapp]

My sentiments entirely. I'm aware of weaker muscle strength and can perform most activities, though not all as I used to. Holding items when working outside becomes increasingly more difficult as weather conditions get colder, particularly my right hand, which has been affected the most through nerve damage of extremities. Any prolonged painting activity suffers from a progressive inability to maintain regular brush strokes. Perhaps I should persist to achieve a new look :). Luckily I have a brilliant family back-up to help when my determination to do the job properly chooses to up sticks and go, lol.

[Hidden]

Muscles, what are they?

[orsen-trapp in reply to Hidden]

Handy things that help to hold the body together (OK not strictly true medically but a light-hearted rejoinder)!

[AndrewT in reply to orsen-trapp]

Oh those 'bits'! The ones that are supposed to help us move, breath and poo-especially that!

[orsen-trapp]

I have just surprised myself by being sensible for once. Two hours on the sun lounger by the fountain ignoring the work that still needs to be done and a job unfinished on a perfect gardening day! Worse, still, my husband was still busily gardening after I stopped ... but *he* told me to stop! We both agreed it was better to have two hours being sensible and taking a break (while still achieving something during the day) than overdoing things and ending up with two weeks in hospital when nothing useful can be done at home. Goes against the grain, though

[Derek]

Way to go! I tend to have bursts of energy then have to recover by not doing anything. I know it frustrates my wife and she does at times tell me to stop. My stock answer is usually 'when I've just done this'. However, I do get involved with charity sci-fi events and if I need to update my 'cash relieving stall', I can spend an inordinate amount of time over it to achieve the desired effect. This I know is tolerated when there are other things I should be doing, albeit at a slower pace. The events are my hobby really and likeminded friends are glad to help, whereas before my problem it was DIY, the heavier side of gardening and just attending events to meet friends. Going through a phase of slow DIY interior decorating just now which, because I can't do it to my normal standard my mind isn't keen to get it done to anything less. The perils of being a perfectionist, lol. Needless to say, I'm always looking for tools/equipment aids to achieve the desired effect but it's at a cost. Perhaps this is something to address within vasculitis local community groups as a possible self help function, pooling our equipment/expertise resources. Why didn't I think of that before?