So I figured that I should add the first 3 Facebook posts that started this all off, so that I've got all my ramblings in one place. Apologies if this is repeating something that you've already read, bear with. Some names have been changed
12/10/18
"Bit of an odd one this, I guess I've wanted to post about this for a while and not really been OK with doing so. Mainly because this kind of thing is usually seen as something of an attention seeking thing, cry for help, along those lines. Anyway, here goes.
Some of you know that I've suffered from arthritis for many years, since my mid twenties, which effects some of my legs joints, knees mainly although I've had twinges in fingers and various other bits too over the years. I had knee surgery two and a half years ago, recovered fine but was left in more pain than when I went in for the op. Just over a year ago I started to get issues with my ankles, left particularly which also included the ball of my foot and toes plus the little finger in my left hand. I looked into more pain meds, amputation and a bunch of other bits. A chance conversation between Wife and a guy doing our floor threw Fibromyalgia into the mix so I stopped asking if I could have my foot cut off! An ankle specialist told me that X rays of my foot showed no arthritis damage so the pain must be coming from something else. At the moment I'm waiting for a potential Fibromyalgia diagnosis, basically an auto immune condition where the brain causes nerve based pain in different parts of the body. It's linked to osteo arthritis, tick! depression, tick! and is generally triggered by a physical or emotional trauma such as an operation... tick! It can be managed but there is no cure. With arthritis you can wait until something is buggered enough to have it replaced, Fibromyalgia just seems to be a case of get on with it, try different meds and you'll probably just have to deal with it for the rest of your life. I applied for PiP, the new name for disability allowance a wee while ago and found out yesterday that I will see a bit of cash for being physically fairly useless, a blue badge being an application form away with any luck. The issues I'm having with my left hand have meant that I've barely picked up a pair of sticks in a year, don't take on gigs any more and am putting a load of drums and cymbals up for sale. I do miss playing and I've got a new band project on the back burner where I'll be playing bass drum, most of my time lately has gone into running the cinema and being a stay at home dad, with a film script leaking out of me when I get an hour in front of a laptop. I want to start archery and Tai Chi lessons but I'm not sure where the time/ money would come from.
So why am I posting this? I don't want any sympathy, it is what it is and I'm not one for "thoughts and prayers", you can stick those up your arse! I guess it's just putting it out there so mates that I don't see much know what's going on. Do I need anything? Can you help at all? No, there's nothing you can do but I appreciate the sentiment. I guess I would encourage you to make the time to go outside and kick a ball around with your kids, get off your arse and take them to the park, to the woods, treasure stuff like helping them learn to ride a bike, play out in the rain with them etc etc. Don't make excuses, don't put it off, do it now. I can't do that anymore, I won't be able to hold up Baby Bear's bike and run along side him, get on a skateboard and do it all first so he can watch.
Anyway, so there you go, my fucked up physical situation in a nut shell. Thanks for reading if you got this far, please don't feel that you need to comment, message or whatever, this is just here for those who decide to take notice."
That specialist appointment now looms large, tomorrow morning in fact. I'm expecting it to simply be the start of various tests, poking & prodding and no doubt being told that I'm too fat, I need to shed the equivalent of my mother in weight. I may get a referral to a pain specialist, I may be given some new meds to try. Having been dealing with this for 16 or so years I kinda know the score and am pissed off enough and in enough pain to push for stuff that wouldn't usually be offered.
No Lego pic to add I'm afraid, I must get more on the case with that. Next post I'll try to do better
Cheers,
PB x
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