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....

I must be totally bonkers?

Well in just less than a week I will be going to my first Lakeside Hammers speedway meeting of the season. It will be the start of my seventh season, and I am proud to say that I have missed no more than half a dozen meetings in all that time. Speedway is my 'line in the sand', the one thing I refuse to let CRPS stop me doing, despite the inevitable cost that comes with it.

My view of the track, before it gets busy!

It has become increasingly difficult year on year, yet still I refuse to give in. I can't wait to get to that first meeting and all the others. I absolutely love speedway, be it the excitement and adrenaline rush that comes with watching four riders going hell for leather around the track (with no brakes), the smell (other speedway fans will know exactly what I mean!), the roar of the bikes, the highs and lows as your riders pass others or are passed themselves. Each race lasts less than 60 seconds, yet so much can happen. There is also the banter with friends, predicting the outcome of each race, cheering the riders on.
I do however have to admit that a large part of me is also dreading it.

It's difficult to put into words just how bad I feel, and how exponential the increase in pain and swelling are both during and after a meeting. It takes me at least 3-4 days of complete rest to even vaguely get back to my 'normal' pain and swelling levels. If there is a meeting the following week I then spend the remaining days desperately trying to get myself in the best shape I can for the upcoming meeting. If there are further consecutive meetings the effects are compounded, I have no chance to recover, let alone prepare myself for the next meeting. It's a downward spiral. Last season, there were meetings throughout August for example. By the time I'd gone to the last one, I was well and truly destroyed. It took a good couple of weeks to get back to anything like my normal CRPS levels. By anyone's standards it's utter madness, but still I put myself through it. Like everything else we do what we can to keep me as comfortable as possible in a vain attempt to minimise the damage.

First there is preparing for the meeting. Hammers' meetings are on a Friday, so from Wednesday morning I do nothing that will take anything out of me. Any thoughts of going in the garden, having a bath, doing my 15 minutes of exercise on the Wii or any other trivial activities by normal standards. I only get out of my chair to sit on the commode. I am even more limited than normal, only allowed to read, watch TV and do puzzles. Oh and my normal session playing a video game whilst Eric walks the dogs first thing. It is incredibly boring but a necessary evil. Thoroughly enforced by Eric, who as always does his best to save me from myself.

All set for the action!

On the day of the meeting I try and sleep as much as CRPS will let me, do even less if it's possible and wait impatiently for the evening to come. Unfortunately everything involved in getting ready to go out is an ordeal. The nightmare that is getting dressed, with Eric doing his best not to catch my feet as he puts my socks on etc. I always become really naggy because I really can't cope with it. Then there is the painful and very slow shuffle to get me out to the car. I now wear my fleecy leg cosy in the car as it helps to minimise the effects of the vibrations from the road. By the time I'm in the car I'm exhausted, naggy and in lots of pain. That's before we start the engine! Usual battle to find the best speed for my legs as we drive the 15 miles or so to Arena. I feel for poor Eric who has to drive at exactly a particular speed which reduces the pain. The speed is never constant, it varies from day to day and even from one road surface to another. He just gets us home as soon as possible after the meeting as no speed will be better, they are all murder. Of course my pain intensity and type has steadily got worse as I have to sit with my legs down in the car.

Once at Arena, mission 'get Jane settled' begins. Eric gets my electric wheelchair organised, pulls me up out of the car and into the chair. Legs up and off we go. Anyone who has been to Arena Essex would agree that the facilities aren't great. It's essentially a banked area surrounding the track. No seating, people either stand or bring their own chair. To get to my viewing position I have to trundle over a sandy, bumpy area under the stand. I used to get dragged backwards by Eric as it was the only way to get me across. Now I can toddle on my own, but it's still a bit of a rollercoaster ride. Once at my usual spot, metal posts go in the ground, to support my legs and prevent me rolling off down the hill. I then manoeuvre onto bits of paving slabs and that's me in position for the rest of the evening. For obvious reasons, I can't move during the meeting, go to the toilet etc. We also have to ask people if they would move over slightly because I can't see through them. Eric, who hates speedway, sits next to me and reads a book throughout the meeting. He is oblivious to everything going on around him.

Can you see me? Go up vertically from the red helmet.

As far as is possible I am in the most comfortable position. Even so, my legs worsen as the night goes on, I'm wearing shoes etc which my legs hate. It's invariably chilly, a nightmare for the CRPS sufferer. My wheelchair is nowhere near as supportive as my chair at home. To a large extent I can 'ignore' the pain because I'm so engrossed by the meeting. Well for some of the time anyway. It is at the end of the meeting when my punishment truly begins. I can't describe the pain involved in putting my legs down, getting me up and back into the car. I do my best not to cry out, but you just can't help yourself. The journey home is horrific, every bump inducing even more pain, every time Eric brakes makes me feel worse. All I can feel is pain, not a chance of keeping my mind off it now. I honestly don't know how Eric gets me back in the house. I can't put any weight on my right foot, it feels as if it has been staked to the ground. My left isn't much better and my knees are unbearable. Every shuffle makes it worse. By now I am so worse for wear that all I want is to get back into the comfort of my chair, get the clothes that are torturing me off, and try to sleep to escape it all. No matter how wrecked I feel, I don't regret putting myself through it because I got to watch the sport I love. Oh and putting two fingers up to CRPS as well is always a bonus!

Sleep is usually in fits and starts, broken because of the pain. On waking in the morning I feel as if I've been hit by a bus. Can't function at all, just sit in a bubble of pain and exhaustion. First lot of tablets on board, barely notice a difference. The recovery begins. I am completely unable to do anything other than sit and fester. Eric has a devil of a job getting me up to sit on the commode. If I'm lucky my eyes will only be very bloodshot and feel as if there is something stuck through them. At worst I can't move my head for the pain, have to wear sunglasses because they can't tolerate light. Heat pumps out of me in waves, that's one of the downsides of pain. It goes without saying that my legs are totally off the scale. Often I can't actually tell where they are, there is just a fog of pain. Can't do anything other than sit and try to watch TV. Over the course of the next few days I gradually improve, albeit really slowly. Hopefully in time for me to do something like go in the garden, go shopping before the next meeting. The reality is that during the season my life revolves around each meeting. Literally.

So, having read the above, am I bonkers? Probably, but will it stop me? What do you think?

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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