The threat of losing something

You don't realise how important something is until it is nearly taken away from you. Similarly it is hard to understand how something that was so integral to your well being has suddenly become less important to the point that you could see yourself not doing it again and not being bothered about that. I am of course talking about archery and going to speedway. The former I found again last August/September after a break of 6 years (and had only taken it up after I got CRPS in 2005). It has been well documented in my blog posts about speedway being my 'line in the sand', my ultimate sticking two fingers up at CRPS. I will go whatever you do to me during and after. So bring it on! Equally I've written about the pleasure archery gives me, the challenge, the doing rather than watching. Being coached by the wonderful Tom and Iris, who are the nicest people you could hope to meet and have been so supportive and taught me so much. Archery became a new 'line in the sand' to join speedway.

So what's changed?

Well, let me take archery first. Saturday was a huge day for me. Since early March, if not earlier I have been having trouble with my right shoulder and arm. At it's worst I couldn't move the arm at all, the pain was so utterly excrutiating. My range of movement has been restricted and putting any weight on it causes varying amounts of pain depending on whether I've rested it or not. This despite the fact that amongst other things there are 50-60mg of Morphine flowing round my system constantly. I couldn't pull my bow, couldn't cope with the weight of it, so I was forced to revert backwards, replacing the 28lb limbs I've been using since October to my old 24lb ones and removed all stabilisation apart from the long rod. This made life much easier initially, but I was soon overdrawing and still couldn't get myself in a good shooting position because of the stiffness and lack of full movement. Perhaps bizarrely shooting doesn't actually hurt so I have been able to carry on. Albeit getting gradually worse and worse. I've had x-rays which prove there no stress fractures or other orthopaedic issues. My GP has organised Physiotherapy which unbelievably isn't going to start until June 25th. My archery 'form' had deteriorated to the point where I had no idea what I was doing, arrows were missing the target, not a single onegetting near the gold. That is not enjoyable. It's not only frustrating it brings me down mentally.  I have had such incredible feelings of anger inside which I couldn't explain. 

Spare a thought for what life is like for me at the moment, being reduced to one good limb. With a duff arm, getting about is harder, I can't do any exercise on the Wii because it hurts and I get a bad reaction afterwards. So I worry even more than normal about my weight. I am even more a prisoner to CRPS than ever. My legs are consistently worse than normal because I cannot support myself to the same extent. They have been flaring badly. Sitting watching TV, reading, doing sudoku puzzles, playing a video game whilst Eric walks the dogs isn't exactly fulfilling at the best of times. Going out is a boost but is harder, so I've been even more housebound than ever. I have been watching loads of speedway from Poland, Sweden, Denmark and even Russia at any and every opportunity as always. No change there. However actually doing something physical, be it waving my arms around as I box, play table tennis or whatever on the Wii adds colour to my (drab gray) quality of life. Both mentally and physically. Archery (which would have to be a fluorescent yellow) has added so much joy and excitement to my life. It's something I can do whenever (depending on how my legs are), having a target down the garden or go over to the club's field to shoot longer distances. Archery gives me such a buzz, it's a challenge, fulfilling, good exercise and something you can never say you've mastered. No sooner have I finished shooting than I'm itching to shoot again. I can't get enough of it.

I hadn't realised how down I've become about my archery becoming such a disaster, with the realisation that there was a very real chance that I may have to give it up because physically my arm simply can't cope. Less than a year since I found it again. I stuck the 28lb limbs on eBay as I won't ever be able to pull them again, and ordered a set of 26lb ones which I hoped would allow me to draw comfortably, and get into the correct position to score well. The 24lb weren't ever going to be a long term solution so it felt make or break. Would I be able to shoot? Get into a good position? Cope with the poundage? Shoot with any degree of accuracy? To say I was nervous was an understatement. I was terrified. It was Eric who suggested I do archery on the Saturday which in itself is unusual. Eric was obviously nervous as well, he knows how much archery means, how vital it is for me. How much of a kick I get out of shooting 9s and 10s. If this session was as disastrous as the last, where would I go from there? 

It all sounds terribly dramatic, but you have to realise that for someone who can do so little for themselves finding something so fulfilling is like finding the Holy Grail. The thought of having that taken away is almost unbearable. Not so it seems with speedway. This season I have only been to one meeting out of the 5 or 6 there have been. Not so long ago I would have been to every one no matter how cold it was, how I felt before I went, what it did to me during the meeting and of course in the days that followed. I prided myself on mot missing meetings. I would spend days resting up before each meeting and sit out the payback days that followed. Now I can honestly say I'm not fussed if I go or not.  I follow the updates at home, and don't get that 'I wish I was there' feeling. My love of speedway remains as strong as ever. As I said I watch any live streamed or televised speedway I can. Love it. But I am completely non-plused by going to see the Lkaeside Hammers live. I was hoping that by writing this I might get my mojo back, but those feelings are simply not there any longer. 

Could it be that the 'doing' involved in archery makes it more fun, fulfilling and enjoyable than sitting in the freezing cold just watching speedway. Could it be that simple? On reflection I think it probably is. The racing over at Arena hasn't been terribly exciting in recent times. There isn't a lot of passing and the meetings tend to drag on for no particular reason. I was quite excited by the team that was announced but subsequent events which I won't go into have dented that enthusiasm. Perhaps watching the accident that subsequently killed Lee Richardson as it happened via streaming from Poland has contributed in some way? It certainly hasn't felt the same going there since. There are also so few meetings in a season now, which are spread out horribly, going for several weeks without a meeting, then three successive Fridays. I love being the European arm of @lakesidelive (the unofficial but endorsed live update service). Nothing else has changed, it's just the Hammers and going to their meetings. I could quite happily not go again, but we are going to the next one in early June to see if the sparkle, the buzz returns. I suspect that subconsciously at least I have come to realise that it simply isn't worth everything I go though to go anymore. Jury is most definitely out that's for sure. Something so vital has become an also ran. Who'd have thought it?

So, back to yesterday. My archery session....

After the first few tentative arrows, I got into a good rhythm and compared to recently had a really good session. I was able to get myself into a much better position immediately, wasn't overdrawing and I was getting arrows in the yellow part of the target again!!  Okay, there were still arrows that were terrible, but overall it was so much better. I was and remain ecstatic. I can still do it, with these limbs I can shoot comfortably and it will only get better as my shoulder/arm improve. I'm not going to lose archery! Gone is the anger, that down feeling that has been lingering for weeks. Can't wait to shoot again but CRPS has punished my severely. Party pooper!

Who knows, perhaps when I go to speedway next I'll feel the buzz again, catch the bug and get back to never wanting to miss a meeting. Doesn't really matter to be honest. I have my archery and that's what really matters to me. Here's to years of happy shooting to come....

With pleasure comes pain....

It seems aeons ago when I last managed to write a blog post. Largely because of the impact doing archery has had on me, plunging me into the battle that is trying to recover enough before I shoot again. Ok I admit I've made life harder for myself by trying as I have to squeeze a second session in between the Club's Friday night sessions. The inevitable fallout is that I can do little else, having only left the house a handful of times to do other things since September. Lakeside shopping twice at most, been to lunch with Eric once. The rest of the time I sit 24/7 in my reclining chair. I play a video game in the morning when Eric walks the dogs, read magazines and my current book, do puzzles, watch televison and sleep. Were it not for my wonderful Twitter and FB friends I've made, many of whom I have become very close to, I would have no quality of life at all. They provide a welcome link to the normal life I can't take my place in. The only times I get up, and this would be impossible without Eric's help, are to sit on the commode (which he brings to my chair despite the fact it is only 6 or 7 feet away) or drag myself up the stairs once a week for torture, oops, I mean a bath. Once is all I can manage so it has to do. Apart from that, my life is about as exciting as watching paint dry. I make the most of what I have, and remain stoically positive, but those are the brutal facts of my situation.

I was incredibly 'naughty' last week, being silly enough to shoot on Friday night and then again on Saturday. I shot a new 

distance on the Friday, on a smaller face and I was disgusted with my performance. The trouble is that my standards are still those of the person who played golf off a 6 handicap seven years ago. I make no allowances for the CRPS, the ridiculous position I shoot in or anything else. It was inevitable that I would shoot again on Saturday, to do better. Eric didn't try and stop me, he knows me well enough to acknowledge that I wouldn't be happy until I'd shot again at a more acceptable standard. 

Didn't matter that I had been virtually unable to weight bear and getting from the car to the house when we got home on Friday, had been unbelievably difficult and excruciatingly painful. It's only a few metres, 5 at most. Might as well be a marathon! Thank goodness for Eric, who, as always, wrapped his arms around me, fully taking all my weight and gently guiding me small shuffle by small shuffle towards the house.Whispering that I could do it, come on, one more step. The man is my rock, my world and I love him more than I can express in words. Finally got me sorted out and back in my chair. Brought me a beautiful cup of tea and Oramorph. Did everything he could to make me comfortable.

In the event I shot a PB for a half Portsmouth down the garden, 208. I was happier. The fallout was appalling, I was in agony trying to get in the wheelchair, let alone sitting in it whilst shooting. When I was finally back in my chair I was in a seriously bad way. Couldn't weight bear at all, so it was a case of getting the wheelchair as close to my chair as possible, him pull and me push up out of the wheelchair then cling on to Eric and fall sideways into the chair affair. More Oramorph and sleep followed till Eric woke me many hours later for my dinner. In my defence I was buoyed tremendously by my achievement so I didn't care.. 

It is a pretty good marker that the payback has subsided and my pain, swelling and everything else are getting back to 'nomal' levels when I manage to get the i newspaper. That's the really small one, with short articles etc. Finally managed it today, some 5 days on from Saturday. Bearing in mind that I have not left my chair other than to sit on the commode or go for a bath (this morning), it gives a reflection of just how hard it is for somebody with severe CRPS to try and have a hobby, do something they enjoy. Get pleasure from life. Oh and I still had to take Oramorph (my last line of defence) today because my legs are still awful. At least I can stay awake for several hours at a time now. That is real progress believe me!! Sunday and Monday passed me by, I slept through them. Tuesday was a little better, in that I managed to stay awake a little bit, but still I just festered, feeling terrible, and life passed me by. Wednesday I could finally read a bit, before feeling too unwell to carry on. Throughout my legs were off the scale and I had to resort to Oramorph at least once a day. It is only today that I feel more like myself. Normally it would be archery tomorrow, but the indoor sessions have finished till 11th January. A reprieve? Probably not, because I will probably shoot tomorrow if the weather is better.

Despite the toll it takes, archery (like speedway) are vital to my sanity. I would go stir crazy sitting at home in my chair 24/7 entertaining myself with reading and so on. The reality of life for me is that it really doesn't matter what I do, however trivial. Even if I do nothing the pain is there. There is always payback. Days of it. My base level pain (an 8 is as good as it gets for me despite the arsenal of medication) and lack of mobility make it impossible to access other areas of the house. I can't do anything independently, so life would be intolerable really. Unless we go out or I go in the garden (another military operation like everything else) I am a prisoner every minute of every day in my chair thanks to CRPS. Quality of life? What quality of life? 

I choose to do archery and go to speedway despite what they do to me, because I choose to try and have some quality of life. I reckon if I'm going to do something I may as well do something I really enjoy. If I waited till I felt good enough to do something I would wait forever. In my position, you just have to go for it. And sod the consequences!!

PS...

I don't like being political but I will allow myself on this occasion. There is a particular irony in that a letter from the DWP saying I am to be migrated from Incapacity Benefit (IB) and assessed for Employment and Support Allowance (ESA) came a week ago. In the weeks to come I will have to 'prove' that I am disabled, unable to undertake work. This will be the fourth time of filling in the form but the first for ESA. How do you possibly put across what life is like for me on a tick box form without the room to elaborate fully? I wouldn't mind but I, like every other genuinely disabled person are branded as a scrounger, the scourge of society by this Government. People who choose to live on benefits rather than go and work. I would give anything to be able to work. There are many things I'd like to be able to do!! Little things like being able to get up and fetch the thing I want rather than ask Eric to get it. Get dressed on my own. Be able to leave the house on my own. Do anything on my own!! They may demand that I travel goodness knows how far to undergo a 'work capability assessment'. It is an insulting and degrading process, causing unnecessary stress when life is hard enough in itself. 

Grinding to a halt

This is the second post taken from the blog I started in late 2009 but gave up on. This entry is particularly pertinent to how I have been feeling since Friday (it is now Sunday) when I went on our puppy, Kai's first walk. See here for details. I knew what it would do to me, but went ahead anyway. It shows how little the punishment has changed between then and now.

Originally written Sunday, 29 November 2009  
I have just had one of those days that I'm sure many with similar chronic conditions can relate to. Namely a day when you simply are unable to do anything at all except sit and hopefully sleep. The pain is just too bad, to the point that not only are you boiling hot, sweaty but you also feel sick and can't even watch television.

Punishment of this kind is suffered all too regularly in my case, because I will insist on trying to do things. By things I mean read magazines, play tennis for a bit on my Wii, go out to the shops and similar pursuits. By any normal sandard these are trivial things, and certainly the length of time I can manage is to be honest pathetic to pre-CRPS activity.

I guess it's all about quality of life. You choose to suffer the punishment for the slightly better quality of life. When starting from such a low base it is totally worth it in my eyes. I would go completely bonkers if I kept to the level of activity that I can actually cope with. Argubly this would mean no life at all anyway....

The quest for success

I've been mulling over what should be the topic of my next post and I've plumped for the quest for success, or more importantly it's importance to the CRPS sufferer. I'll try and share strategies that we use to try to make sure life is about positives rather than dwelling on the negatives. I hope it helps my fellow sufferers and gives others further insight into this terrible disease.

CRPS takes no prisoners as I've said before. I've been writing this since 6.30am, largely because I'm hoping it will take my mind off the horrendous way I'm feeling and the terrible pain in my legs. I woke up feeling like I'd been hit by a bus. The reason? I dared to go out to lunch with Eric for the first time in ages. So I'm sitting here in agony. My legs are on fire, I have stabbing pains all over the place, my cheeks are red hot (cheers morphine!), I'm overheating badly and my head feels like it's surrounded by a fog that is pressing in on me. It would be terribly easy to feel really down and depressed, wishing I hadn't bothered going out. I desperately try not to and that's a philosophy that stands me in good stead.

As far as it is possible I do my best to take the positive from any situation or anything I do. Not dwelling on what I can't do, which would inevitably leave me feeling down, useless and thinking 'what's the point'. In the early days those thoughts were never far away, and certainly contributed to me considering suicide on a daily basis. I'd be lying if I said I don't still feel totally fed up, desolate, low and resentful on occasions because I either can't do something or am really struggling to cope with the payback. Being unable to do anything is so incredibly frustrating. You have to do things to try and take your mind off the pain, so if you can't? Well it's a viscious circle.

The other really important factor to me staying positive is that I don't set any long term or even short term goals anymore. It's pointless because I never know what I'll feel like from day to day, let alone in a couple of weeks/months time. Sponteneity is not a word applicable to the CRPS sufferer. We make appointments, such as the dentist. However these often get cancelled on the day because I'm simply not up to it. We don't worry if we are a bit late for appointments either, we go at our own pace and get there when we get there. Rushing causes more pain and makes me snappy and irritable. People are fine with it because they know the situation. Similarly as far as possible I don't have a deadline for anything, or at least give myself a lot of time to get something done. It seems ridiculous that it can take me a couple of weeks to order something on the Internet. But it's amazing how I simply don't feel up to getting the tablet out. These blog posts take so much out of me, it takes several days to write just one, but again every one published is a success. It is so hard to do anything whilst suffering chronic pain, so why make it worse by doing too much! For the record it has taken four sessions to get this post done. Hope it was worth it!

Another thing I do is keep a diary. At the end of each day I briefly write what Ive done, and more importantly my achievements for that day. We're not talking mind-blowing stuff here, or things which normal people would thing twice about doing. Things such as having a bath, managing to read a newspaper all the way through, ordering something on the Internet, spending time on Twitter. Here are some typical entries....

26/10/2011 - Played Deus Ex (video game, I always play whilst Eric walks the dogs). Feeling really grotty, spent all day sleeping, trying to get well enough for Jackie's visit. Had to get through feeling grim, Managed to get talking in the end, Really good to see her.

23/10/2011 - Played Killzone 3. Played tennis (I do this sitting in my chair using a Playstation Move controller which I swing as if hitting the ball). Felt dreadful later in the day. Read paper today. Slept lots of the afternoon. Read my book.

22/9/2011 - Played Deus Ex. Went to Lakeside (shopping centre). Really enjoying it although legs not good at all. Bought Sony Tablet. Slept all afternoon.Read part of paper. Read my book.

23/9/2011 - Played Deus Ex. Felt absolutely terrible today. Couldn't do much, tried to rest. Read paper. Managed bit of setting up new tablet. Read my book.

Riveting stuff isn't it? I put 22 & 23 September entries in as they show how doing something like going out knocks me sideways. Typically the length of time spent reading is about half an hour before I can't carry on, similarly the newspaper takes a couple of sessions. Sometimes I read the same sentence several times, falling asleep again before I can get any further. I play the video game for about an hour and a half. However each time I manage to do any of these things it's an achievement, something to be positive about. It is also good to read through my diary when I'm feeling low, reminding myself of what I have managed to achieve.

I try not to think how utterly pathetic my daily efforts are compared to what I used to do. With CRPS you have to celebrate the little things because they are all blows made in what is the constant battle against the pain, exhaustion and everything else that is part and parcel of having CRPS.

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.

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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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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Just tell me what's wrong!

Imagine you go to bed one night. Just the same as any weekday night. You went to work that day as normal, in my case teaching, came home, had tea, watched some telly. You get the picture. Nothing unusual, nothing spectacular, just a normal day.

During the night, unbeknownst to you as you sleep, something happens that will completely and totally destroy your life as it was. Something so catastrophically destructive and rare that Doctors don't understand it, can't really treat it and certainly can't cure it. CRPS decided to knock on your door while you were asleep. Little did I know what lay ahead of me when I woke on 16th December 2005.

I went to work as normal on that Friday (16th), with a bit of stiffness in my right hamstring. Thought I must have slept funny. I wish. By the time I was due to teach in the afternoon I couldn't put any weight on my right leg and the foot was freezing cold. I was sent home from work, and by the Sunday my foot was like a block of ice, despite several layers of socks and a duvet wrapped round it. A trip to casualty ensued. I just thought I'd be wasting their time at A&E and be told to go home.

Instead they couldn't find a pulse in my now ischaemic foot and shortly after I found myself sitting in a hospital bed. Not allowed to eat or drink, they put me on a drip to keep me hydrated. I remember it feeling rather surreal, how could this be happening? For the next 48+ hours or so I was attached to a heparin pump and they finally found a pulse sometime in the early hours of the following morning. Think they thought it was a blood clot. How I wish it had been!

Then the testing began. MRI of blood vessels in the leg, normal. Echocardiograph, again normal. They were completely at a loss. I was already getting stabbing pains on the inside of my right ankle and knee, whilst my right foot remained stubbornly cold. Sent home two days later with an appointment at the out-patient clinic immediately they got started again after Christmas.

Unsurprisingly Christmas for us was a complete non-event. We just wanted to know what was wrong. It was like huge dark cloud hanging over us, the fear of the unknown. If it wasn't a blood clot then what was it? Things weren't improving, the foot remained freezing cold. The stabbing pains were ongoing and if anything getting worse. How was I going to return to work after Christmas? Never in my wildest dreams would I have thought at that stage that I would never return to work.

Back to hospital. I had ultrasound on the back of my leg done the day before the follow up vascular appointment. Lovely Consultant but said there was nothing he could do. Absolutely nothing wrong with the vascular system in my leg. It wasn't a clot. He arranged for me to see a Consultant in Rheumatology.

You can probably guess what happened next. Yep, loads more tests. I must by now have had every blood test known to man. The Consultant arranged for me to have a Pamidronate infusion. Utter waste of time, did nothing. Also had a tri-phasic bone scan. All the results were normal. What a surprise! RSD (as he referred to it) was mentioned as a possible cause for the first time.

I felt like I was going mad. I had now had the symptoms for two months or more. There was most definitely something terribly wrong, my mobility was worsening and I was now starting to see similar symptoms in my left leg. Apart from Clopidogrel the hospital prescribed nothing for me. They were I have to say absolutely useless. It was left to my GP to try and prescribe what he could to minimise the pain and other symptoms I was suffering from. I rapidly went through the different classes of painkiller till I was eventually prescribed morphine. I was up to more than ten medications by the time I saw the Rheumatologist the second time. I am still on all of those medications to this day.

I had not been back to work since the day I was sent home. We were also getting more and more concerned about the complete lack of urgency to do anything with me once they found that 'everything was normal'. Nothing we can do other than try to manage the pain (palliative care) so we'll book you into the next joint clinic. Which of course was months away! Eric had started to research the condition and discovered that if treated aggressively within a short time of getting CRPS, you could force it into remission. He was amazing, pushing, hassling, complaining. Trying to make things happen. But like everything else in the NHS, the wheels grind exceedingly slowly. We lost that window of opportunity.

Eventually I managed to get through the very laborious system they run to get to see a Pain Management Consultant. It's an utterly ridiculous system. Appointment to see the Rheumatologist and Pain Management doctors to 'hand you over'. Then you have to wait to go and see a Pain Management Nurse Practitioner to see if you need to see the Consultant. They can't do much, but did prescribe one extra medication which helped a bit. Finally I got to see my wonderful Pain Management Consultant who immediately diagnosed CRPS. He ordered a MRI scan of the lumbar region to check all was well. Yes, of course, it was normal.

By this time everything was considerably worse, particularly my mobility, or rather lack of. It had been more than six months after that fateful night for my CRPS to finally be diagnosed. And in that time it had well and truly got hold of me, remained very aggressive and just seemed to keep coming relentlessly making life harder and harder. I never set foot in a School again, being ill-health retired in 2007.

I've tried to keep my long path to diagnosis as concise as possible but it's vitally important to recognise just how long it takes. As I write this a part of me still wonders whether my CRPS could have been forced into remission had it not taken so long to get to see the right person? Or at least been prevented from moving to the other leg? Of course I will never know and it may well be that my CRPS was always going to be severe enough that nothing would touch it effectively. I just do my best to get on with the life I've been left with. More on that at another time.

Of course you have far too much time to think and mentally you go to pieces. I spent much of those six months feeling sufficiently depressed that thoughts of suicide were regularly present. Were it not for my wonderful Eric and my Border Collies, Bella and Kayla it's safe to say I wouldn't be writing this now. Thank you my love for all you have done and continue to do for me. Without you life simply would have no meaning now.

I'm sure the vast majority of CRPS sufferers have gone through a similar ordeal as me to get a diagnosis. It almost seems as if it is diagnosed on the basis that everything else has been ruled out. In the meantime your symptoms are getting worse, you fear for the future. You can't move on, can't get back to work. You are literally in limbo. The symptoms prevent you from doing things both because of the pain, exhaustion and compromised mobility. You're also worried that you might make things worse. Uncertainty reigns and there is little if any support from the medical profession.

Surely in this day and age you shouldn't have to resort to looking on the Internet to find out about your condition because neither your GP or most Hospital Doctors have even heard of it? And in some cases don't even believe it exists!


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Introducing my CRPS

I have a condition known as Complex Regional Pain Syndrome (CRPS) also known as RSD, a rare disease which affects the Sympathetic Nervous System. CRPS affects both my lower legs from and including the knee downwards. Actually it's moving above the knees if I'm honest but I prefer not to think about it. I also have problems with my eyes. I will have had CRPS for six years come December. I would not wish this disease on my worst enemy so completely debilitating and life changing it is. The only way to deal with the catastrophic effect it has had is to now consider my life as consisting of two parts. Pre-CRPS and Post-CRPS. More on that another time.

The day to day impact of CRPS is that the affected areas are constantly (and I do mean 24/7) painful. This pain is not a gentle ache, we are talking pain of the potency that at times you would happily accept death just to escape it. That sounds ridiculous to 'normal' people, after all everyone suffers from pain, we should just get a grip and get on with it shouldn't we?

My pain is constant, relentless and varies in type and intensity. I constantly have what feels like ripples of fire running up and down the front of both legs. Most of the time I can't actually perceive my legs at all, there is just pain. Then add in the stabbing pains, such as through the middle of each foot, as if you've been impaled to the floor. Or the side of the knee as if someone has stuck a knife in and is slowly twisting it. Or through each ankle, or through the middle of your leg. Imagine this is happening all day every day, it never goes away, never gets better. Indeed it only gets worse if you do even the most trivial of things. Indeed CRPS punishes you for daring to do somethings as simple as have a bath, get dressed or anything else considered even vaguely normal. Life with CRPS is about as far from normal as it is possible to get.

The swelling - gross!!

Sadly you don't just have to deal with the constant pain, there is so much more. The swelling (oedema) around my knees and ankles is frankly disgusting. Years ago I measured around one of them and it was 34". Yes the same as many men's waists. And both knees are worse now, I don't measure anymore. My right foot points inwards because of the swelling around my ankle. I can't see my toes as they are so turned over. Bizarrely both big toes stick up on the air constantly. I cannot move any of them because of the pain. Unfortunately I still have full range of movement so that should my joints get pushed or pulled accidentally they work, producing exquisite, sickening pain. My balance is unsurprisingly rubbish.

What else? Oh yes the hypersensitivity (allodynia). My legs cannot stand anything touching them, my pain increases the longer the contact. I spend as little time as possible wearing trousers, socks. Perversely even the slightest hint of air flow over them increases the pain so my legs have to be covered constantly. The phrase 'stuck between a rock and a hard place' springs to mind. My husband has to help dress me. He is incredibly careful but sometimes he touches me slightly with a knuckle. This causes me to howl with pain. It is unbelievable how the slightest of touches exacerbates the pain so much. Similarly hot/cold water causes a disproportionate response. My husband runs the bath, so I know the temperature is fine. Yet I put my foot slightly in, it feels boiling hot. Movement of water, has the same effect so swimming is impossible. I even pick up the vibrations from the car when we go out. This forces my husband to try and find that particular day's optimal speed in an attempt to minimise the pain.

Speaking of increased pain, when my legs are 'down', say as you would sitting normally on a chair, then my pain increases as does the purpling effect which is ever-present over the whole of my lower legs. I can no longer sleep in bed, so my life is restricted to living & sleeping in an electric reclining chair, with my legs up carefully covered with a lightweight duvet. When I go out my wheelchair also has to have elevating leg rests.

Like so much with CRPS you have to tell yourself that there is NOTHING PHYSICALLY WRONG with your legs, you cannot damage them and the water isn't too hot. Really difficult at timesI can tell you...

The above sounds horrible as I read it back. However it is not exaggerated in any way, I'm just telling it like it is. I remain as positive and bloody-minded as I was pre-CRPS, two qualities that have helped me deal with it. I rattle with pills that do very little and I am constantly 'punished' for daring to push the disease as hard as I can.

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