Just thought I'd let you All know about the gig I thought would probably put me in bed for a week. I'm arrived at venue at 5:45 should have looked at ticket a little closer. Doors 19:00. So that's an hour and a quarter before we even go in. Finally got in and first band on are the fairly impressive support band "the raven age" who are good enough and look professional enough to be on the lower end of big festival stage order lists. Then at 9 the act we had all been waiting for, Steve Harris' British lion. For those of you who haven't a clue who Steve Harris is. He's bass player of some little band from Leyton east London called Iron Maiden. And this is his is side project. I won't go through set lists etc but it was good. Very very good.
Been about 25 30 years since I've been able to get that close to a member of maiden
A fantastic gig walk back to the tube, one stop to kings x . Then the train home. Taxi from station. Total time on feet without a break 5 1/2 hours. Now the nitty gritty. Remembering that I had gone to this whilst knowingly in full flare of my as yet undiagnosed condition. On Thursday I woke up sat on the sofa with the telly on remembered thinking "don't feel tired yet I'll put the maiden film on flight 666". And then sat down and gone out like a light. I was freezing so went upstairs to bed. It was lovely coz I did ache a bit. I spent until half one in bed as tescos were delivering my. Groceries. Put all that away then had a visit from late wife's parents. They left about 5 and I had a bite to eat. Something else that never normally happens mid flare. I just don't get hungry. Then back to bed. Woke up Friday feeling like a bus head hit me. But took my morphine which I hadn't had since Wednesday morning which probably didn't help. By Friday evening nearly there. Saturday morning back to normal. Properly normal. So are my flares getting shorter. Coz if you say that standin on my feet for 5 1/2 hours and being knocked about all over the place is going to make me feel better then I will say. B S and that's as far as ill go.
But as an experiment, do I go to gigs whist mid flare? Well after that experience the answer is a resounding yes. But that was only one concert. But my credo. Don't let this disease stop from doing what you want to do. I know that there will be some out there who genuinely can't fight back and to all of you I say good luck my friends and my all my hopes and wishes for the future. But if I can persuade one of you obviously after checking with your specialist to do something you really love obviously not skydiving or anything like that. But a bit of dancing? Or a game of snooker or just anything within limits that you might find that even though you've not done it for years ask your GP/specialist their opinion and you could be back doing something you love probably not as well as you used to, but ask yourself does that really matter?
Or is it just the fun that matters. The smile on your face? The sheer enjoyment.
That's what I found out on Wednesday last week. Now what's my next gig.
Written by
Peter55
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I think it is wonderful that you managed to go at all. You have really done so well with this and I want to genuinely and sincerely wish you all the best of luck.
Proves its all in our heads. I worry about doing most things but when you are distracted and having fun our symptoms disappear. I am talking about Fibro not arthritis or the other health issues most of us have as well. In no way am I trying to dismiss Fibro but I have the same issues. If I am doing something I don't enjoy the Fibro wins , the pain and fatigue takes over. But when I am having fun and the endorphin's are flowing I don't notice my symptoms. This is why people around us have a problem with the condition. I have tried distraction for years , would throw myself into online gaming. It would take me away from reality and make me forget about the pain and fatigue. The only problem is reality always bites and I continue to suffer. Glad you had fun bud , keep doing what ever gives you a lift .
I do also try to get on and do things that I don't like. I think that all comes from my CBT for anxiety. The credo being if a problem can be sorted, sort it. If it cannot be sorted, it goes into the "what if" file. Which basically means it's not a problem yet but could turn into one. Ignore it until it becomes one because you're using up problem solving time on something which is not yet actually a problem. So I find if I have a task to do, even if I hate it, if it doesn't fall into the "what if" file I will try to do it until it physically beats me and I have to ask for help. So yes I know it's a lot easier to do the tasks which give enjoyment at the end, I also do the ones I don't like possibly as a hangover from when I suffered badly from anxiety. I've found CBT useful in a lot of things in life. Analysing pros and cons ant getting things done if they can be coz then they stop being the monkey on your back. Without things to do hanging over you, sleeping is a lot better. But as with 99% of the people on the site most of my problems are financial. Does this government think I asked for this disease
? Do they think it costs less to live like this? Well if they do then they're badly mistaken. These are the tasks that I don't like because they are out of my control. And a lot of "to do" time is spent on tasks that are there not due to anything we have done. They're due to us being ill.
So as they're are so many "to do" tasks which have a frustrating or bad ending for us, we give a little more celebration to something we achieved which brought us pleasure instead of the endless brick walls we seem to run into the rest of the time.
I went to see Paloma Faith at the O2 a few months ago with my daughter - we were sitting so all fine (except the angle to the stage!!). She was brilliant - so glad that I made the effort - so I do agree with you - don't stop doing everything because of your condition (or whatever you want to call it) but just pace yourself and be prepared for what might happen the day after.
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STILL WAITING FOR DLA DECISION !!!!!
Hi all, had knuckle replacement op, and doing ok
Dr gave me great news, biopsy report all OK
People still think Fibro etc is all in the Mind!!
Acute fever after having warm bath or shower
