Saturday, 29 October 2011

Something else it's ruined...

Why does CRPS manage to ruin everything or at least do it's best to? Physically and mentally. It seems to pervade every aspect of life, spoiling it, taking some of the pleasure you get. You'd think after nearly six years I'd be used to not living a normal life. Well anything even vaguely representing normal life in my case. Never in a million years would I have thought this would include our new puppy. But it has. It has been quite some time since I've felt down about something. But I am feeling really down about Kai. It seems so irrational as I type this but it's how I feel.

I'll try and put how I feel into words. I was so looking forward to getting Kai home, our little bundle of fun that we could play with, teach to sit, lie down, stay, come when called, and all those other things you do with a new puppy. Take them outside to do their business, take them to the Vet for their first set of jabs, feed them. Every new experience shared, relished and enjoyed. Most importantly developing that bond with him that will last a lifetime.

But of course CRPS has put the dampeners on that. I'm stuck in my chair all day, every day, apart from getting up to have a bath, go to the toilet. We've had him just over three weeks and I haven't left the house since he arrived. He's still too young to be left, and there isn't a strong enough bond with the girls yet to trust them with him alone. I can't feed him, I can't feed myself for heaven's sake! I can't carry him outside first thing in the morning to do his business. All I can do is shout Good Boy! from afar. I can play with him on my lap, playing tug with his toy, but I can't teach him to play fetch, can't sit on the floor and roll a ball to him. Can't go out in the garden, can't even see him toddling about, exploring what's out there.

I sit in my chair and watch him follow Eric around, grab at his trousers, ask to get on the sofa with him. See him whining, sitting at the bottom of the stairs because he and Kayla have gone upstairs and he can't follow them. Or cry when Eric goes out, even if it's only to get the milk in or answer the door.
See him come running when Eric calls him, be it across the living room or from the bottom of the garden. He loves to sleep next to Eric on the sofa, or on his lap, playing with Kayla and so on.

Compared to Eric I'm boring I suppose. I just sit here, and when I do get up Kai is put on a chair because he tries to chew my toes which of course is a complete no-no. At the start he was quite happy to snuggle up with me and Bella and sleep. Now however he doesn't seem to want to do that at all. He's off after Eric or sitting on the sofa or his bed. If I'm going to do anything with him I either have to wait until he presents himself at the side of the chair so that I can pick him up or Eric has to physically pick him up and give him to me. I can call him till I'm blue in the face and he won't come to me.

I'm out of reach, inaccessible. The only time he comes across to me from the sofa via 'the corridor' is if Eric and Kayla have got off the sofa. 'The corridor' is the pile of puzzle books I have on a table wedged between the sofa and my chair. Kai toddles over that to get to me so that I will put him down. He generally doesn't settle, but instead wriggles or wanders down to my feet where he looks to try and get off. If I'm lucky he'll settle and sleep briefly there but then of course he's resting on my feet which is really painful. Why does he want to sit on me when he can go and have fun elsewhere!

This does paint a gloomy picture. There are of course lovely moments. Because he can't go out for his walk yet he is left at home. I then have him all to myself. He sleeps, I groom him whilst he wriggles like mad, we play tug with his fluffy duck or other toy. That will soon come to an end though, something I'm dreading. As soon as they all come home he wants to get down and greet Eric and Kayla. He wags his tail like mad when he sees Eric and gives him a big kiss. He's bonding brilliantly with him.

I don't mind admitting that I'm jealous. Not of Eric or the way Kai is with him. I think it's wonderful. I get so much joy from seeing how much he loves Kai, running around after him, playing with him, talking to him. I'm jealous that this wretched disease is robbing me of the same enjoyment, the same experiences. When he starts going out for walks I fear I will have virtually no interaction with him. I can't go out on their walks, just something else I can't do.

I love Kai to pieces, I just wish CRPS would let me enjoy him....

Monday, 24 October 2011

A weighty problem!

Something I haven't touched on in this blog as yet is weight. It is a battle that I fight alongside CRPS itself. Bit of context first as always.

I have never been thin. You would probably have described me as stocky pre-CRPS. I am a smidgeon over five foot and have the sort of metabolism that means if I look at a cake I'll put on weight. Because I was into sport, the gym etc I was able to keep the weight down. I also had a lot of muscle because of the sport so as I say, stocky pretty much covers it.

The huge snag however is that I have always had a complex about my weight, always thinking I was fat, looked huge. You get the idea. My poor husband had a running battle getting me to eat. I would rarely have breakfast, and would probably skip lunch so essentially mainly ate in the evening. I was forever starving myself in an attempt to lose a bit of weight. It's a psychological problem I've had from a very young age, partly because of my mother (there's a whole book I could write about her!!), happily never to the point that I would become anorexic, but it's been ever-present. I have always beaten myself up over my weight and what I eat. I have always hated how I looked.

Imagine how I must feel now? I can hardly walk so no exercise opportunity there. I have a motorised wheelchair as it's the only way I can realistically get around with a semblance of independence. It is incredibly difficult to push yourself in a normal wheelchair with your legs elevated to 90° to my upper body. I hate being pushed and love the speed I can go! Only chance I get of moving quickly these days. The vast majority of time I am sitting in my reclining chair.

I manage to do a little bit of gardening thanks to the raised beds we had created in the garden a couple of years ago. I can't get out there regularly because the punishment is severe and it's incredibly frustrating anyway. Everything has to be brought too me because of the legs. I can never reach, and of course I'm sideways on which makes things even more 'interesting'. Equally, going out, say to the Lakeside shopping centre, wipes me out so I lose days trying to recover. Speedway leaves me wiped out for days. What I can do when is dictated by CRPS, so what on earth can I do to not put on huge amounts of weight?

The obvious thing is my diet. Well if I starved myself before imagine what I'm like now? Eric is driven to distraction as I refuse to eat anything more than a 1oz bowl of bran/cornflakes for breakfast and dinner. He buys other stuff to tempt me into variety but gets nowhere if I'm honest. I then have a small tea, often leaving some despite the fact I have a small portion anyway. I would estimate that I eat between 1000-1200 calories maximum a day. At this point I can almost hear Eric saying 'not even that many!'. Sorry my love...

My bloody-mindedness comes to the fore once more, I refuse to eat anything I consider I shouldn't and if I do have a treat (like pudding or a cake) I will beat myself up about it. Makes life even more exciting as you can appreciate. We visited a dietician very early on, and she was more than happy with what I was eating, even said I should probably be eating more. Yep I ignored that last bit! Of course the condition doesn't help either. I have horrendous swelling in both legs. All the muscle I had has gone in my legs because they don't really ever bear weight. It is the upper body that does all the work. As a result I have 'bulked up' in my upper body making me larger there too. I used to suffer horrendous pain in my arms, shoulders and lower back. Nearly 6 years later and my upper body can pretty much cope with anything I throw at it. I have no idea what I weigh as I couldn't get onto scales and stand there anyway. I have put weight on, obviously, but not a huge amount.

So the only other thing left is exercise. Remember I loved exercising, so it is a double blow that I am now so totally limited. I do some archery but that isn't really exercise in the true sense. Well bot to me anyway. I have one of those feet peddling things which I use with my arms. Trouble with that is that of course it is resting over my upper legs so makes my legs worse. The only other thing I have found is to 'play tennis' on the PS3 using the Move controller. I thoroughly enjoy this as of course I used to play tennis pre-CRPS. Bear in mind I am doing this sitting in my reclining chair as always with my legs up. My legs aren't involved at all. It is all upper body. So why on earth then does it completely bugger up my legs? God forbid I can actually have some fun and not be punished for it!

I have to say that over the years I have slowly come to terms with my situation and the fact that there isn't really anything more I can do about my weight than I am already doing. That has been a huge mental step, although I would be lying if I said I hadn't lapsed numerous times. I still fundamentally hate the size I am, it is still a struggle not to beat myself up constantly. As Eric and others tell me, all things considered I am doing extremely well with my weight. I'm not enormous, I can still wear the shirts etc that I wore pre-CRPS. It is only trousers, socks and shoes that have increased, and that is because of the swelling. Eric is a fantastic cook so it would be all to easy to eat loads of his lovely food, especially his cakes which are to die for! I don't and will continue to fight it. I will also continue to try and do some exercise as and when CRPS lets me, not just because of my weight, but also because it is so fantastic to actually do some exercise. I get such pleasure from waving my arms around hitting an imaginary ball, it's the closest I'll ever get to playing tennis again. It's incredibly frustrating not being able to do more. A lot of the time I do some even though I know I shouldn't. That won't come as a surprise though will it?

A final thought -  about my stupid GP. I have a borderline thyroid problem so we do a blood test every three months to see if it has worsened. After the recent one he called me in. I don't generally go into the Doctor because it is one of those cases where the ordeal simply isn't worth the effort. We assumed it was because the thyroid was causing more of a problem and we needed to start medication. No it was to tell me that my cholesterol is a little elevated! His answer - eat less. I did my best to tell him that I eat very little anyway and have a healthy diet. No, I just had to eat less. He went as far as saying that he didn't care what I ate, just eat less of it. He also rambled on about how I could end up needing a hoist in years to come blah blah blah.

I was devastated, upset and very angry. Just how insensitive had he been? Absolutely no allowance made for my condition and what I'm up against. Just the same advice he would give to anyone else. Of course mentally it re-enforced the demons that are never far away. It shows I still dwell on it because I'm writing about it here.

Just another example of how the medical profession is ignorant about my illness.

Saturday, 22 October 2011

It's going to be a very long Winter

My feet, as you will know, are both riddled with CRPS and have a mind of their own at the best of times. They can go from freezing cold to boiling hot at whim, regardless of the weather. However it is the Winter that I really struggle. The hypersensitivity caused by the CRPS means that any small change in temperature has a response which is completely out of proportion.

Bella's usually lying on me in some way or other.
As I sit writing this I am sitting as normal in my reclining chair with my legs up. I have already gone up one thickness of duvet. This goes over the top of my legs and underneath so that my lower legs are completely covered. No air can get in. I also have an additional lightweight fleece blanket laid over my feet and a 'slanket' over the top of that.

Despite all of these layers both feet and ankles feel like blocks of ice and have done continuously for at least the last 24 hours if not longer. The stimulus? I touched our laminate flooring when standing up. They are incredibly painful, to the point of screaming and when I get up (only to sit on the commode - just another concession I've made to this illness) they feel brittle. So brittle that it's a surprise that they don't just shatter. I shuffle even more slowly, turning is harder and my chances of falling are greater. I rely even more on Eric to help me move. A distance of no more than a few feet. It's pathetic by any definition of normal living.

Of course it doesn't help that I'm not wearing socks, nor trousers or slippers. It would seem the obvious thing to do. However none of those is an option because they would be in direct contact and so exacerbate the pain. We have to be careful with how heavy the layers we add on top are because any part of the duvet touching toes etc increases the pain. Too much weight means too much contact and so more pain. I just have to sit it out in the hope that eventually some warmth will permeate and they warm up. People have suggested hot water bottles, which of course would be natural thing to try. We have - we wrapped the hot water bottle in several pillowcases then I rested my heels on it. It was unbearably hot. To Eric it didn't even feel warm. This is what I'm up against.

Of course the slightest stimulus such as them becoming exposed to the air, or slightly touching the floor is enough to send them back to being ice cubes again. It's an absolute nightmare. Going out obviously has the same effect. It is a running battle from now onwards. They are particularly bad already, which sadly means that as the title says, it's going to be a very long winter.....

Tuesday, 18 October 2011

Searching for the Holy Grail?

CRPS is a neurological disease where the sympathetic nervous system stops working properly. In essence either the nerves are firing off false pain signals to the brain, or the brain is mis-interpreting normal signals as pain. Either way your nervous system has turned on you and there's nothing you can do about it.

CRPS is incurable, and is very likely to be so for some quite considerable time. They don't actually understand how or why someone gets the condition. They don't understand how it works, so it stands to reason that any 'treatment' can realistically be little more than trial and error in the hope that something helps. I have a sneaky suspicion that CRPS sufferers are almost treated as guinea pigs for Doctors to try therapies on. Desperate for a cure they are willing to try anything no matter how invasive and regardless of whether it may actually make things worse. Hence the 'Holy Grail' title of this blog. In reality all that can be offered is palliative care, essentially trying to improve your quality of life.
What makes the situation even more complicated is the fact that some things work for one person, reducing the pain and associated symptoms. May even get the person into remission. The very same treatment may have a reduced effect or absolutely no effect on someone else. Unfortunately I fall into the latter category in that nothing (TENS machines, nerve blocks, infusions) has really touched my CRPS. It was and has remained aggressive, having spread from the right foot to the left and moved upwards. It has also affected other areas which I won't disclose after a normal procedure which women have routinely. As I've said in a previous post my Pain Consultant has admitted that there is nothing more he can offer me. He did say he would fit me with a Spinal Cord Stimulator but was honest enough to say that he didn't think it would do anything and certainly couldn't guarantee it wouldn't make things worse. His opinion about the way forward, or rather lack has beeen confirmeed by two further distinguished Pain Consultants.

I am pragmatic enough to accept the lot that I've been given and do everything I can to make the most of life within the significant limits the condition places on me. That is not to say that I have given up, I will fight this thing till my dying day. However I refuse to submit myself to invasive, highly unpleasant or possibly experimental procedures which at best only have anecdotal evidence that they 'may' provide some additional relief. If and when a cure is found I will be the first in line believe me!!

Some reading this may think I'm absolutely mad. Why on earth am I not travelling anywhere and trying everything to try and find something to alleviate the terrible symptoms I suffer? Searching for a treatment that will take the pain away and give me my life back?

Perhaps it's the Physicist in me, or perhaps it's because I am a cynic at heart ? I don't know. What I can say is that I would rather live as I am than submit myself to something that could make me worse. The probability of success simply isn't high enough to risk it. Take a spinal cord stimulator as an example. An invasive procedure involving having wires attached to the spinal cord with a box which sends electrical pulses intended to interfere with the pain signals and block them. A TENS machine is an external version of the same thing to all intensive purposes. It did absolutely nothing, at any setting from lowest to highest. A nerve block (different way of going about the same thing) did absolutely nothing. Factor in the possiblility of something going wrong, the wire moving, my pain being made worse etc. It doesn't take a great leap to understand why I won't be going for it or similar procedures.

I take a large cocktail of drugs, many intended for other illnesses which work together to try and reduce the pain and swelling, increase blood flow, thin the blood, try to help me sleep, dampen the nerves, reduce the muscle spasms and so on. The full list reads as 40mg of slow release morphine taken every 12 hours, baclofen (used in the treatment of MS), clopidogrel, omeprazole, nifedipine, clonazepa, diclofenac, co-dydramol or co-codomol (codeine metabolises into morphine so gives a boost without the extra side-effects), amitriptyline, fluoexetine, quinine bisulphate, bisacodyl, lactulose.  It's like a jigsaw, all adding up to the best relief we can manage. I also take Milk Thistle and Acai Berry supplements to help my body cope with the drugs.

Having had CRPS for nearly six years, I know it all too well. The medication coupled with a whole host of strategies we have worked out over time serve to manage the condition as well as we can. By any normal measure of quality of life, mine is awful. The alternative is to constantly seek out new specialists and ever more obscure procedures in the hope one will help. I couldn't cope with all the waiting for appointments, the travelling involved in getting there (eg Bath), the stress and worry having whatever it is done, staying in hospital etc.

No, I shall continue as I am and wait for someone to find the Real Holy Grail for CRPS, namely a cure....

Saturday, 15 October 2011

Last one.. for this season

CRPS does it's best to stop you doing anything and everything. From something as simple as having a bath, to going out, say to the shops. Everything I do has to be planned, in fact leaving the house to go anywhere is like a military operation. Every part is an ordeal, from being helped out of my chair, being helped to get dressed, shuffling out to the car, being helped into the car, the added pain that comes from having my legs down/vibrations from the car, being helped from the car into my electric wheelchair.... you get the picture. Without the constant support from my husband the house, no actually, the living room would be a prison. Even long standing appointments have to go by the wayside if I simply don't feel up to all that it involves. Spontaneity is not a word that applies to my life anymore. You literally have to force yourself to do things in the knowledge that you will pay for it tomorrow, the day after or even the day after that.

I talked, in my last post about adding new things into my life after I got CRPS. As time has gone on some of these have fallen by the wayside, simply because the benefit or pleasure gained is not worth the pain and the payback. I keep talking about 'payback' but what does that actually mean for a CRPS sufferer?

My payback varies in intensity depending on what I've done but there is no escaping it. Minor payback is characterised by increased pain in my legs and feet, a little more swelling. I will also feel tired and mildly 'punch drunk'. This typically lasts for the rest of the day after I've done something such as have a bath or go out really briefly, say for a dental appointment.

At worst the pain is so bad that I don't know what to do with myself, the exhaustion is such that I literally have no control over whether I'm awake or not and I feel so unwell that I can do nothing other than sit in the chair and wait it out. I can't even read. Concentration is impossible. My head throbs, I feel as if I have a thick fog around my head, stabbing pains in my eyes, which also become very bloodshot. Oh, and the swelling increases to the point where my skin feels too tight. Typically we're looking at 2-3 days of this before I start to feel 'better', i.e. when the pain, exhaustion, swelling etc return to 'normal' levels

You can now probably understand why there is the constant weighing up going on in my mind about whether what I am going to do is worth what will inevitably come later. Experience plays a large part. I know if I go to the local shopping centre, Lakeside I will be incapable of doing much for the rest of the day or the next. I was never able to go food shopping before I got my electric wheelchair but this again causes lengthy payback so it is not a regular thing. I no longer go anywhere to do archery, preferring to do it in the back garden, because I don't have the added ordeals of getting dressed, travelling there and back and so on.
I also need to plan ahead in an attempt to minimise the payback. Say we're going to try and go shopping on Wednesday. I will endeavour to do as little as possible the day before, so that I feel 'at my best' (or rather my interpretation of) on the morning of my trip out. Of course it doesn't help a lot and it is just as well I'm a bloody-minded, cantankerous wotsit and do things anyway otherwise I really wouldn't leave the house. Which brings me to the title of this post. 'Last one.. for this season'. What am I talking about?

In a word..... Speedway.

My view of the Speedway track
A friend took me along very early on in my CRPS days. He'd said to me about going several times pre-CRPS but I'd never take him up on it. After all there was so much else in my life. Now however there was nothing to stop me. We went to Press & Practice at Arena Essex, where the Arena Essex (now Lakeside) Hammers ride from March through to October. It wasn't a proper meeting, it was more about blowing away the cobwebs and getting ready for the new season. I loved it! The smell, the roar of the bikes, the speed, everything. I then went to my first meeting and it was fantastic. Four riders going hell for leather for four laps. A heat lasts less than a minute but it seems so much longer. So much can happen in 60 seconds, it's like a game of chess. The rider in front trying second guess the chasing riders to maintain the lead. For those chasing it's a case of trying other lines, trying to force a mistake. Did I mention they have no brakes? It takes a hell of a lot of bottle to go at speeds of up to about 80mph with little protection apart from a set of Kevlars and some body armour underneath.

My thirst for speedway isn't limited to watching th Lakeside Hammers in action live at Arena Essex. I also watch Elite League  and Grand Prix Speedway on Sky Sports, Polish Extraliga, Swedish Elitserien and Allsvenkan Speedway meetings streamed live on the Internet. Plus any other meetings I can find. It has become an integral part of my life, an absolute passion. I can't imagine life without Speedway, the Winter is bad enough!

Speedway is the only thing that truly takes my mind off the pain. It is so absorbing, plus there is the camaraderie of those who stand near me each meeting, every season. There is the debate about who we'd put in as a rider replacement, how the points will be shared in the next heat, how good or bad the referee's decision was for an incident. We moan when the team aren't doing as well as we think they should and celebrate our riders' achievements.

The lengths I go to to watch speedway
Unfortunately speedway rates at the top of the ranking in terms of payback. During the Summer when you can have a meeting each Friday for several weeks, my life becomes little more than trying to get over one meeting and prepare for the next. Saturday morning I wake feeling as if I've been hit by a bus. I wait for my tablets to kick in, but they only help a little. I don't remember much of the weekend, spending most of it unconscious. It isn't sleep because I don't get a say in it. I can't fight it, I literally pass out.
By about Tuesday I have rallied enough to possibly go to the Lakeside Shopping Centre. But that's it for the week. The rest of the time is spent doing as little as possible in preparation for Friday again.

Each season has become that little bit harder. If I'm honest this season has almost been too difficult. The pain has broken through more during the meeting and by the time we get back to the car the pain has become absolutely unbearable. How Eric gets me from the car back into the house, undresses me and gets me sat in the sanctuary that is my reclining chair is beyond me..

I am proud to say that despite all that I've described, my attendance has been nearly faultless again this season, as it has been in previous ones.It doesn't matter how I feel I go, it isn't up for discussion.  No matter what CRPS throws at me I will continue to go to speedway. I refuse to let CRPS stop me doing this where it has so many other things since I got it.....  the line has been drawn and is one that I don't intend to to be pulled over anytime soon!

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Friday, 14 October 2011

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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