Grieving for your own life?

Sounds ridiculous doesn't it? Or perhaps sensationalistic? In poor taste? Grieving in the usual sense means someone has died, be it a relation, a friend or a much loved pet. The saying 'life goes on' is cliched but true. You will miss the person terribly, may never get over the loss entirely but you do carry on. It's what we all do, it's what society expects. People are very supportive, life is awkward perhaps as people tread carefully around the subject but then after a while everything settles down and yes life really does go on.

When CRPS strikes, it doesn't just affect you physically. It also has a devastating effect on you mentally. My life changed completely when I got CRPS. I had become trapped inside a body that had seemingly developed a mind of it's own. Was broken, had turned on me. I can't really put a time-scale on it thinking back, but I vividly remember the suicidal feelings that dogged me more and more regularly as it became clearer that I wasn't going to get better, wasn't going back to work. In fact I was only getting worse and having my independence slowly taken away from me bit by bit.

At this point I will try to give a feel for what my life was like pre-CRPS. I have a First Class Honours degree in Physics. I started a PhD at Imperial College focusing on developing new types of lasers before deciding it wasn't for me, and went and did a PGCE a year later.

I was a very good teacher, I've been told this by former colleagues, my OFSTED 'grades' were always excellent, pupils always wanted to be in my science groups, chose 'A' Level Physics because I taught it and my results spoke for themselves. I made lessons fun, did loads of practicals and more often than not the most disruptive element in the classroom was me. I loved teaching, I came alive, 'performed' if you like, full of enthusiasm, making Science fun and doing all I could to dispel the idea that Physics is hard. I was told many times by pupils that I should have been a stand up comedian. I mentored other teachers, be they GTPs or those newly qualified. My career plan was to work my way up through the ranks, Head of Dept, Senior Teacher etc etc..

Sport was my other main love. I was lucky enough to possess a natural talent for all ball sports, ranging from cricket, through golf to racquet sports. I have played badminton, tennis and golf at County level. I also played these at club level together with hockey. I played golf off a 6 handicap (virtually without any coaching) and have had two holes in one. There are lots of trophies and other items littered around on shelves for golfing and tennis competitions that I've won at some point or other. I've played in all sorts of teams for various clubs in various sports. I loved playing sport, loved flogging myself to death at the gym, swimming 50-60 lengths in the pool. Sport of one kind or another was ever-present throughout those 35 years. When I wasn't playing more often than not I was watching it on TV.

I loved walking and playing with our Border Collies Bella and Kayla. They were only about a year and a half and a year old respectively when I got CRPS. I read, was into all things computer, especially repairing and troubleshooting problems. Played video games when I had the time, usually sporting titles. I did all those tiresome, yet necessary chores such as housework, food shopping and ironing. We went out to the cinema, had meals at restaurants and went up to London to visit Galleries etc. All those normal things we do as part of normal life.

Looking back I suppose I could have been been considered a high-flyer. I'd certainly packed a lot into my 35 years. I lost just about all of that to CRPS. Without warning, bang, your life has changed. All those things that you take for granted had become completely out of reach. What was the point of living any longer? I had lost all sense of purpose and was flailing badly. I could only manage to lie on the sofa all day in agony. Doing even the smallest of things left me completely exhausted and in even more pain. I was constantly dog-tired but unable to sleep for any length of time because the pain kept breaking through. I would wake on the hour every hour during the night.

Mere months ago I could happily complete 36 holes of golf carrying my golf bag. I could be on my feet all day, dealing with challenging classes and all the other things teachers have to do. Now I could do nothing, couldn't even stand unsupported long enough to brush my teeth, couldn't carry anything, everything had to be brought to me. Couldn't do any housework, couldn't even make a cup of tea. I had to have help dressing, getting up, bathing, just about everything really. Each morning, Eric would have to pull me round into am sitting position in bed whilst I cried out in agony. Everything had become a nightmare of pain, frustration and degradation. I was eventually to give up on sleeping in bed completely.

Meanwhile the world carried on as normal. My friends all went back to work. It was as if I had stepped into a parallel universe where time had stopped. I couldn't move forward because we didn't have a diagnosis, let alone a prognosis. I'd been setting cover for all my classes at work, but had to admit defeat in the end. How could I set work weeks into the Spring Term when I had no idea what the classes had or hadn't done? Work was the least of my worries, but I hated the fact that I was letting people down even though it wasn't my fault. Human nature I suppose. It all added to the feelings of futility and uselessness.

Perhaps the worst thing though was the catastrophic effect my getting CRPS had on my husband. I haven't mentioned Eric up to now. There is quite an age gap between us and I had wanted to get him out of teaching for some time. He had developed type 2 Diabetes and also had high blood pressure. The sums worked out, we could afford for him to take early retirement, with me continuing to teach. He retired in July 2004. He was going to do all those things he'd never had time for, silversmithing, pottery, printmaking (no prizes for guessing what subject he taught!). Bella had been his retirement present. Only a year and a half into his retirement CRPS completely ruined those plans and he had to become my full-time carer. He did so without complaint, suffered my moods, my anger, my tears. I felt so guilty, felt like a massive burden on him. I was like a huge rock around his neck preventing him from doing anything. Life was not supposed to be like this, why had this happened? What had we done to deserve this?

The worst part of course is that you tell yourself you will get back to normal, return to your life. You can't accept the reality or rather you refuse to accept it. I must have been an absolute nightmare to live with. I wasn't eating, suffered wild mood swings, would sit 'festering', making no attempt to do anything, nor take any interest in life. I had way too much time to think about my situation. I was suffering from depression but couldn't see it. Inevitably my thoughts regularly turned to suicide. I knew exactly how I would do it. I took 40mg of slow release morphine twice a day. I would only need to crush up up some of those tablets, together with Solpadol, Amitriptyline and perhaps some of my husband's diabetes medication. I would wait till he went out with the dogs. Easy.. I figured it would be better for Eric if I was no longer here, he could do all those things he'd planned.

Thankfully I woke one morning and told Eric to take me to the Doctor's. I admitted how I was feeling and asked for help and went onto anti-depressants. They gave me enough oomph to start to fight back. Eric was as always my rock, supportive yet didn't try to influence me in any way. He did tell me that it would destroy him were I to commit suicide. How could I consider doing that to him? Suicide was no longer an option.

The tablets together with Eric's unwavering support gave me the strength to carry on and battle CRPS. The only way I could escape that dark place was to set aside everything that was my life pre-CRPS and try to forge a new life. Instead of looking back I had to look forward and make the most of the lot I'd been dealt. In a way I had to start again. I managed to come round to the way of thinking that feeling down, dwelling on what I had lost was pointless and a waste of energy. It didn't change the situation, so what was the point? It is a philosophy that still stands me in good stead today. I still get periods when I feel down, but can now kick myself out of it. The very dark days have gone forever.

I gradually forged a new life within the constraints of my condition. I took up archery, the only sport I've found that I can do in my wheelchair with my legs elevated. Video games have become a greater part of my life, letting me escape the day to day reality for an hour or so. I aim to be doing something, such as Sudoku puzzles, reading etc all the time I'm awake both as a way of taking my mind off the pain and continuing to use my brain.

I now have an electric wheelchair that allows me to go food shopping, occasionally walk the dogs and go out to lunch with Eric. I can't do these activities very often because like everything else I do I am punished mercilessly after the event. In many ways I would be far better off if I was paralysed because then I could shove my legs out of the way and do so much more.

And finally there is Speedway. A friend took me along to a meeting in the March after I got CRPS. I fell in love with it and am proud to say that I've only missed a couple of meetings in the last six seasons. It plays merry hell with my CRPS, the punishment is horrendous, taking days to recover and I really shouldn't do it. Can't cope with it if I'm honest. Part of me would quite happily stay at home. My husband certainly wouldn't mind as he hates it. He sits reading a book, oblivious to what is going on around him. I will not let CRPS win and will continue to go next season and the next and the next...

So coming right back to the title of this post, I have successfully grieved for the life I had. It was the only way I could continue with life. I do what I can, and constantly push CRPS back. It has taken so much from me, but it won't take everything. I won't let it.....

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