I put a post about this on a 'mad' thread, but this is about so much more than anger or loss.

At the end of everything, getting this disease has changed who we once were, in a way that we didn't ask for and couldn't control. That leaves us with not just the pain and other health and mobility issues, but a whole heap of emotional garbage we have to carry around afterwards. The old chestnut of 'why me?', and more than that, 'what the hell do I do now?'

If I ever get round to writing a book about CRPS, I think I'll give it a subtitle, 'The First Two Years' Those first two years were my emotional sorting process, where I filed all sorts of things away. During that time I learnt so much about CRPS and doctors and how the practice of medicine actually works, and who the actual priority is for so many medics... There are some fab doctors out there, but I've lost my innocence as far as blind faith in them goes. No bad thing I think.

I was very a active wife and mum, playing chase with my youngest, lots of dog walking, family days out, always the first one to start decorating or gardening lol. I played a lot of tennis and was very involved behind the scenes in the game. Loved it. Loved lots of sports...I'd have a go at most things. We didn't have much money most of the time, but I thought so often that once the children had grown up and moved on to their own lives, we would have a bit more time and energy and cash to go and see and do the things we wanted to... I worked at a physically active job that I was good at and enjoyed, and my money made a big difference to us.

I had increasing left knee pain over about 6 months, started when walking, climbing stairs, etc. Saw the doc, then a physio, no change so referred to a specialist. More physio, getting worse if anything, so he said they would just have a look inside my knee, see what was wrong and sort it out. No problem. He said I would walk out the same day, and be back to my work and sports in 2-6 weeks. Oh the treachery of it. Very very very blasé about any risk... I remember going in to surgery, nervous but so glad we were actually doing something to resolve things so I could get well again.

I remember waking in recovery, oxygen mask over my face, tears rolling down my cheeks, just crying at the pain. They gave me something, concerned faces hovering over me, a hand on my shoulder. Nothing. Heads shaking, more busyness around my hand. I must have slept or something. I woke up in the day ward, more pain, nurses having conversations around me along the lines of 'she shouldn't be in so much pain...' They rang the surgeon, who said they had done a lot of resurfacing work in there, so that was why, and to give me something stronger to control it. Nothing they did seemed to make much difference to me, I jut remember my poor husband sitting by me, lifting the mask to wipe my face and kiss my cheek, holding my hand and looking worried. Poor lad.

Much later I was moved to a room for the night, and was finally given morphine, and I slept for a few hours. I remember being really hot, and so relieved when my eyes started closing... The next day I woke feeling a little better, but any movement of my knee was awful, but they wanted me up on it and moving about, after all, I should have gone home the previous day. One of the surgical team came and said they had cleaned my knee up a lot, but everything was fine now and I would be back to work in a couple of weeks. He wasn't sure why I'd had so much pain. I was helped to get up to limp the few steps to the loo. Omg the fire in that knee. They were a bit impatient. They saw this op every day, it was a day procedure, I should have walked out, but here I was, cluttering up a ward and making a fuss about a bit of soreness.

By the time I made it back to the bed I was a mess. More painkillers, more voices outside my room, more discussions. Husband seemed to be with me a lot, normal visiting rules relaxed for a wonder. I stayed another night. Next day, after another night of very little sleep I had had enough. I went home on codeine and something else, made it very slowly up the stairs to my own bed. I was told it would settle down soon, just tissue damage, no biggie. At home I tried to do my physio exercises, and waited for the pain to lessen... It was getting worse again, saw the surgeon for my follow up, he didn't think I should be still having this much pain. Hint hint. He said they had only cleaned it up and flushed it out, nothing that would cause any problems. Was I doing my physio? Using ice to control the swelling? Of course i was. Honestly, he clearly thought. What a fuss.

Time dragged on with no change. Movement was terrible, even with crutches, no movement pretty terrible too. Life just shrank down to my bed and my sofa and pain. My knee started behaving oddly, the big ball of swelling was still there, but it was very cold one minute, very hot the next. Strange colours started appearing at times, ugly random splatters of blues, purples, oranges and reds. Strange pains too, the dull ache, the bone wrenching pain, the dagger stabs, the lightning hot sear, the cold numb pain of iced water. My family were concerned. The ice I was using to control the swelling started to cause more pain, so I used it less and less, although the physio was adamant it was the only way. My stomach gave up on the ibuprofen, so that had to stop. Elevation continued. You do what you have to. Just survival at that point.

Two months after the op I saw the surgeon again. He was surprised at how little progress I had made, at the swelling, at the pain. He put his hand on my knee. It was having an icy patch right then, thank goodness. He stopped and looked at me, put his hand on my other knee, then back on my bad knee. It obligingly began to flash little orangey patches where his hand had been. He started to ask some questions that I now know are entirely crips-related, he kept watching my knee as it did its weird thang....he sighed. He said, I think you have developed something called CRPS. Chronic Regional Pain Syndrome. He explained it very briefly. He said he would refer me to a specialist, and to see my GP for pain relief. He wished me luck. I left, went home, and started reading. Saw my GP and asked for something to try. Started amitriptyline. In three days I was a different person - the pain was less, I could put my toe to the floor!

My initial elation cooled quickly because progress was so slow and painful. I learnt a lot about CRPS, tried to help myself as much as possible, and luckily found a friend who had had it for a while. Her advice helped such a lot. I hated being so rare and special, having something no one had heard of, including everyone at my surgery. Sigh. The odd medic would pretend to know it, then let themselves and me down by their inane ramblings or poor advice. My faith in medicine really sank, especially when the ami stopped working. I asked for and was given Lyrica, titrated up to a high dose. That gave blessed relief from the worst of the pain and I started to get some recovery.

Of course by then I was a year in. My life had shrunk a lot. A LOT. Friends had wandered away, work had ended, social life was non-existent. It's like starting from scratch in a whole new world as a whole new person. It's unfair and it feels like it. You want people to learn about this cripsy thing, to understand what you're going through and give a damn - but they just can't get it. If it was that bad, surely everyone would know about it? There would be a concert and stickers and adverts about it? Ha. We wish. Trying to do things with all these new thing to think about.....how far is it to a loo? Are there any stairs? Is there a seat? How far is it from the car? Is it cold there? It's like planning your first outing with a new baby, packing everything you might need and planning an escape route. No fun at all. Awful to have to take a babysitter with you because something might happen. The fear was a whole new ball game. I wasn't a scaredy-cat by nature, but now I was skittish going outside my front door.

Oh dear, I'm sorry. I didn't mean to make this post my life story!!!! I'll cut it there. Anyhooooooooooo.....

Cut to nearly three years on, and I have mellowed. Less anger, less sorrow and what if, why me, what now, etc. For me, I had to let some stuff go or I was going to go mad. It's destructive, the anger and grief. You have to go through it, but then you need to put it down and metaphorically walk away. I've found other things, different work that I can control (mostly), different pastimes (thank goodness for Minecraft lol) and a couple of new friends. Getting back out there is like being single again, and it takes a lot of determination to achieve anything at all. I'm still a bit of a coward, and have to really push myself to try anything new at all.

I don't know the answer, but I do believe that it's a journey we have to take. Getting stuck in one place is not good for you, in all sorts of ways...

Anyway. What a ramble. Good luck guys, never give up on yourselves

Bram x