Another setback, but the battle goes on

Time for another blog post and as always it's my way of working through something that's troubling me or reflecting on my life as it is now. For those who haven't read my blog I have suffered from CRPS (Chronic Regional Pain Syndrome) for the last ten years. It started in my right foot, moved up to my knee and then jumped to the left leg as well. I won't bore you with all the gory details, suffice it to say that I'm in constant chronic pain 24 hours a day (apart from the respite that is sleep), 365 days a year. Pain so severe that along with 14 other medications I constantly have 55mg of slow release Morphine flowing round the system. It helps a bit but not much. The pain takes every form from stabbing, burning through to horrible tingling like electricity running up and down your legs. CRPS has left unable to walk other than shuffling along in the arms of my wonderful husband Eric for the odd metre or so. My life as it was ended, I was no longer a busy Physics teacher who played golf off a 6 handicap. 

CRPS moved into my eyes and both upper arms in 2013. Most recently it has moved into my mouth and I'm classed as having Whole Body Pain Syndrome. Basically my nervous system is completely broken. Limbs go boiling hot or freezing cold at will, the slightest breeze over exposed areas makes the pain even worse and I now can't eat various foods because it's too painful. It is a case of where will it move next? Read my other blog posts if you're interested.

Life now is spent in my electric reclining chair with my legs up. I have to have my legs elevated and covered all the time otherwise the pain becomes even more unbearable. Similarly I constantly have a fleecy blanket over my upper body to protect my arms. I rarely go out now, any semblance of normality just doesn't exist for me any longer. Eric became and is my full time Carer. He does everything, something that frustrates the hell out of me. Actually life frustrates the hell out of me!!

Two new things filled the void, speedway and later on, archery. Eric used to take me over to Arena Essex to support the Lakeside Hammers in the early years, but this became too difficult so I now watch as much as I can on television. I've even had Polish satellite television installed so I can watch that as it isn't shown over here. I love it and can't wait for the season to really get going. 

Having always been 'sporty' I missed the active lifestyle of my previous life. Archery was something I could do, sitting in my electric wheelchair with my legs elevated. Not exactly easy but I had some coaching and got pretty good. It was great to be good at something again, I could compete with able bodied archers and won various medals and cups from my 'dip' into competitive archery. It took a terrible toll on me, as does everything else, but I loved it.

Which brings me to now. I always write in my journal after I do archery. Be it good or bad. It's been all bad when it comes to archery since last November. This coincided with an abortive change of medication which made all my symptoms worse and did more damage than I would ever have thought. Here it is.....

16/3/2016 Archery today - 60cm target, practice 

Well, mentally I think I'm coming to terms with the fact that I just won't be able to shoot like I could anymore. Every time I slot an arrow on the string I'm trying to shoot with the correct technique, and to be honest I don't actually think I'm doing anything wrong. It's a physical problem, namely my arms have deteriorated to the point where I just can't shoot 'technically well' like I could.

It's happened? After three years of fighting it, CRPS has destroyed my arms' range of movement and strength, and with it taken the quality of my shooting away. My arms just don't 'listen' to me like they did. The 'feel' I had has gone and with it the precision, control and repeatability of my draw that produced the scores I shot and the medals I won. Who would have thought that an attempted change in medication (with the hope of making things better) would leave me in a worse state than before? It's cruel and I am taken right the way back to when I first got CRPS. Yet again this condition is doing everything it can to strip me of doing something I love and what defines me as a person.

Long term it won't win, because I will continue to shoot, I look forward to every session, and although I might get frustrated when an arrow is utter rubbish because I've released too early or it goes low because I didn't hold my anchor point, there are always positives to be found. Today, for the first time in ages I didn't miss the target. There were loads of awful arrows, but every one ended up in the target somewhere. That's a reason to be cheerful in my book!

I also feel a little bit more in control of when I release the arrow. Bizarrely my arms/fingers have released the arrow without conscious thought more and more since November. It seems utterly ridiculous doesn't it? But that's what I've been up against. I've worked hard in the last few sessions so it feels good when I manage it. It might only be 3 or 4 arrows in an end but that's an improvement. I actually scored 52/60 for one end today. Chuffed. In comparison to before it wouldn't have been that good but I'll take it now that's for sure.

The other positive today was that I went for it a bit more, opened my shoulders and shot with more purpose. What's the point of being tentative which isn't going to result in a good shot anyway? There was one shot today, where I thought 'wow, I've not shot like that for a long time'. It felt wonderful and went dead centre of the target. There, another positive!

Will I get back to where I was? I honestly don't know, but I will continue to try and most importantly enjoy it however good or bad it may be. As a friend told me recently:

Here's the thing….. You are an Archer. Good or bad doesn't matter really. You achieve every time you pull that bow.

Archery, CRPS and me...

I keep a journal in which (amongst other things) I write about each archery session or competition I shoot. Things such as how it went, what went well, what I could do better. I thought it might be interesting to post one such entry on here. It might give an insight of the benefits and frustrations of trying to do something the best you can when you have a chronic condition which makes doing even the simplest thing really difficult and most things impossible.
So here it is... 

Archery today - shot Portsmouth, scoring 528

“Focus on what you’re doing not the target” or “don’t think, just shoot” are definitely the mantras I need to focus on I think if I am going to shoot at my best all the time. There is absolutely no reason why every arrow shouldn’t score nine or ten. I have the technique, it’s my head that’s letting me down. A 2 for pity’s sake, where on earth did that come from? 

As soon as I think about it I become tentative, not “squeezing’ the shot on release but somehow trying to guide it in. A bit like lifting your head on a golf shot, something I trained myself not to do. Of course the former keeps the power on and in-line, the latter can mean slight angles creep in which makes the difference between the gold or worse. It comes down to anxiety/fear of failure/self-applied pressure of not getting the arrow in the gold every time. That is what I expect of myself for a Portsmouth (or a WA 18m to be honest). If I can chill out a bit more things will be much easier!!!

To a certain extent I suppose guiding it in has crept into my shooting because of my arms. When everything is stiff and range of movement is rubbish I literally do have to do what I can to get the arrows to that all important yellow bit of the target. Just getting to full draw and holding it there is hard enough, let alone going that little bit further. 

The good thing is that I really feel my release is better, more consistent. As my coaches always gently reminds, ‘just try and pull that elbow back that little bit before release’. I can tell the difference as the arrow comes off the bow. I love that felling when you know it’s a great shot without looking at the target. Not much beats that if I’m honest.

I know that I should be proud of what I am scoring, and I am….yes really. Doubting it even as I type it!! Useless Mrs P!!  It’s great to be as good as I am considering I shoot with a really basic setup compared to those I shoot against, a 28 pound 64” bow, and extremely unorthodox body position by anyone’s imagination! It would be very interesting to see how others would do if they sat in my wheelchair and shot as I have to!! Perhaps I should challenge someone…. 

I suppose I’m frustrated that my body ALWAYS lets me down, to varying degrees. When my arms don’t want to play ball at all it’s not so bad. It’s the rounds where I’m shooting really well, but then just can’t keep it going. Be it pain, stiffness, locked up left arm, getting cold or just plain exhaustion I always seem to go through a bad patch part way through, or it drops away at the end. I’m disabled so I shouldn’t expect so much of myself? Nope, it just doesn’t work like that. Well not for me anyway. I get this glimpse of what I could do if I was an able-bodied archer and then it’s snatched away.

Me, shooting outdoors

I can’t and won’t give up. I will continue to improve and shoot better scores if it kills me. Archery gives me the chance to be ‘me’, the competitive, driven person I was before that fateful day in December 2005. The day CRPS got me. There isn’t anything else in my life that comes close to giving me the buzz archery does.

I’ve just read through what I've written and realised I haven’t even considered the effects of recent days.  The day before yesterday I couldn’t even keep water down. Such were the side effects of an ongoing attempt to increase the dosage of a new drug we were trying to move over to, which we hoped would improve my pain relief (see my last blog post for details).

It didn’t and my body demonstrated it’s utter disgust by reacting so violently. Yesterday I managed to eat toast and a bit of soup. My pain control is worse until I can get back to the 50mg slow release Morphine that did a better job than I had ever imagined. I’m nowhere near a 100%. It’ll take a month or so to get back to where I was. Common sense says 'What am I like’ to even try and shoot a complete round today? 

Hmmm... anyone who knows me or reads my blog knows that I don’t do common sense! 

Choosing the right path

As is so often the case I turn to my blog to work through issues that, for whatever reason, are troubling me. Life has a way of throwing things at you which seem unfair, unjust or just plain wrong. It can happen to any of us, at any time and affect any aspect of our lives. What, if anything, can you do about  it? Is it better to do nothing? And if you choose to do nothing, can you live with that decision?

Life is hard enough for me, just existing takes a great deal of mental strength, so if something happens to knock me back in some way it's a big deal. It can be the smallest thing, no doubt trivial to many, but it can throw me spiralling downwards mentally. It is really hard to fight my way back to equilibrium, whatever that means when you live with constant pain with the associated stress, frustration and exhaustion that comes with it. My quality of living is rubbish. I can't exercise because all four limbs are affected, so I do the best I can to starve myself so that I don't put on weight. I deny myself anything like chocolate. There is really only one thing I do other than sit in my chair 24/7 and that thing is archery. I have come to depend on it to retain my sanity, I look forward to the next time I get to shoot almost as soon as we've packed my bow away. 

When you're disabled people treat you differently. It's more than likely that many don't even realise they're doing it. They can't see beyond the wheelchair or condition, only seeing the perceived problems it, and by definition, I pose. Don't get me wrong, there are wonderful people out there who go out of their way to help, make life easier or help me access activities I wouldn't otherwise be able to. Thank goodness!!

As many who read my blog or who are lovely enough to follow me on Facebook will know, doing archery has come with its own battles. And I don't mean the problems my condition throw at me. I mean the ridiculous rules, barriers and sheer lack of understanding that I simply can't do anything about. Let me explain...

I'm disabled and need a wheelchair to get about. I can't walk in any real sense of the word, I can only shuffle a few yards wrapped in the arms of my husband. Standing without supporting myself (or being supported) is impossible and even then only for more a few minutes. It is blindingly obvious that I need to shoot in a wheelchair. It is also common sense that if the pain is minimised when my legs are elevated then I shoot with them up just as I spend the rest of my life doing. My arms simply aren't capable of pushing a manual wheelchair, the pain becomes unbearable in minutes. It doesn't take a massive leap of faith to see therefore that an electric wheelchair is essential. So why then do I not qualify as disabled in the archery world?  I actually received the following in response to an enquiry about joining a disabled body you'd have thought would be ideal for someone in my position.

"As you have already mentioned your condition is not one that will classify & I am sure you will have problems with competitions  as you will take up a large amount of space on the line.

This to organisers has a cost implication as they cannot accept entries for that space.

You could become an Associate Member of ******* [ full membership would not be an option as your condition is pain related] but again space on the line is limited & we have to limit the numbers who come to each weekend."

In other words, sod off! It beggars belief to be honest. Thank goodness so many able bodied clubs don't have this attitude and I have been able to take part in a wide range of indoor and outdoor shoots this season. The only ones I've not been able to enter are those with no disabled toilets or I couldn't access the field. I've even managed to shoot for my club! But those who should embrace me as a fellow disabled archer shun me. It seems I have the wrong type of disability and the wrong type of wheelchair. Or am I too disabled? Perhaps someone like me shouldn't try to take part? I don't easily fit into their definition of disability and am therefore too much trouble? Who knows?

Of course this won't stop me doing archery or taking part in competitions. You have to rise above these things and just get on with it. Life as they say, is too short...

Physio, CRPS and archery....

As is the way with most of my blog posts these days, archery features prominently.Not surprising is it when you consider it is the only thing I now do and is the only reason I leave the house apart from hospital appointments and the occasional trip to Lakeside or a meal out every month or more like three?

Went to the long awaited physio appointment at the hospital yesterday with a Pain Specialist Physiotherapist, and it unsurprisingly proved to be a complete and utter waste of time. She could offer me nothing apart from get on with it. Of course we went under no illusions that it was going to be anything else, but human nature says that despite yourself (and believe me I am an utter realist about my situation) you can't help but have that little bit of hope. And that means that despite yourself, you feel upset when the stark reality of your situation is brought home yet again.

My broken nervous system means that my nerves are hypersensitive so my arms overreact to everything. Of course the usual stimuli that affect my legs so badly have the same effect in my arms. Tiny temperature changes register as unbearable by my nerves, normal air flow, the lightest of touches become a gale force wind and being whacked with a baseball bat respectively. The result is significantly increased pain, swelling and everything else that comes with CRPS. My legs sweat profusely as do my arms (especially when I'm shooting), my clothing and hair are always damp or wet because of it. My arms swell like my legs whenever I use them and archery only makes this even worse. Don't forget that I can't really use my legs other than to shuffle along for very short distances and only if supported by Eric. Not only do I want to use my arms for support which takes its toll, I want to do a sport that requires relaxation and solid technique in every part of the shot time after time over the course of several hours or more. With all the waiting around that comes with competition conditions.

The only positive that came of the appointment was that I do have a better understanding of just how much CRPS affects my archery. It is the reason why it takes my arms longer to get warmed up, why I can overheat really quickly and bizarrely how fast my arms get cold again. It is easy to see why shooting groups of three arrows at competitions is such a problem for me. Even the complete locking up of the left arm is due to CRPS, my nerves misfiring, exaggerating the effects of holding that arm out straight holding the bow. Relaxation through the draw is impossible when your arm is rigid, and you simply can't relax it no matter how hard you try. And believe me I've tried everything without success.

The worst thing is that CRPS doesn't need a stimulus to 'play up' to make archery all but impossible at times. My arms, like my legs simply have a mind of their own and I can do nothing about it. Other than try to force my uncooperative arms into a position that will let me shoot as I know I can. To get everything in line, release at the point where I'm floating over the gold. And then do it again and again. It's exhausting, which is why I've had to significantly improve my nutrition during a shoot. I now use fast release energy sachets together with hydration drinks which I consume continuously. It helps but it's something else to worry about.

Bottom line is that I've just got to carry on as I've been doing the last two years since my arms were affected. Pushing through the pain to maintain the range of movement I have yet balance this with the need to avoid a flare up. I'm on my own, battling with a condition that isn't understood, let alone has a cure, or even a recognised palliative care regime. You just have to get on with it and fight. It's so important to have something that you are good at. Mentally it gives me such an enormous boost when I shoot well. 

I have to accept that how well I perform in any given archery session is to a large extent completely out of my hands. Or even how this changes during a session. For someone with the high standards I demand of myself this will be really difficult. No, make that impossible....

In reflective mood...

Racketts Worcester Competition - Scored 240  (Format: two targets, one high, one low)

2nd in session. Won club team bronze medal overall

Wow, what a day. When Eric phoned this morning having walked the dogs to tell me the car wouldn’t start I was devastated. I’d looked forward to this competition for ages, didn’t do the Frostbite yesterday and now couldn’t shoot today? No…

It all turned out ok though as the breakdown guy got us going and we made it.

I shot really well on the first target, having had to adjust the sight a fair bit after the sighters and first couple of ends. Was shooting well though, lots of 5s, great rhythm, felt relaxed. That was on the lower target, scored 129 for the first 3 dozen. They had a board of scores as we were going along. I was first at one point and there was only ever 2 points between me and the other lady on that first target.

The higher target was always going to be a worry for me, having not been able to practice two targets at the Saturday session which was cancelled. It was a nightmare as I just couldn’t get up there with any accuracy at all. With no sighters I spent some time adjusting the sight, then just had to focus on my technique and try to improve. Was chuffed with the 5s I managed, especially the 3 in the final end. Only managed 111 on the upper target, which was the best I could manage. Gave it everything.

What can I say? I did my best, and just wasn’t prepared to shoot a target so high. I can’t replicate that at home, but will have to find a way of doing better. Who knows what score I could have achieved. Where I could have come? I don't know where I came overall yet as the results haven't come out.

My results in the first three competitions have shown the standard that I am is far better than I thought I was, especially given the way I have to shoot. Whilst archery gives me so much, it is a great sadness that I will never be able to see how good I can be. CRPS yet again holds me back. I know I should be grateful to have achieved what I have in the three competition shoots I’ve done and it will hopefully just get better the more of them I shoot. I am, really I am. I am so lucky to have found a sport again that I love and also helps retain range of movement in my arms.

BUT, and it is a big but, it has also shown me that were I able to really focus, train and push myself harder the potential is there to do and achieve so much more. My coaches have said they feel I have the ability to become a para archer but that can never happen. Firstly CRPS doesn’t qualify under the rules of classification for para archers so I can never be one anyway. Worse though is the fact that I can’t travel more than about 20 miles to shoot in competitions, can’t shoot more than a couple of times a week because it wipes me out so much, nor do any other training which would help me do better. I have to nurse my arms along as best I can, with some days being unable to get to full draw let alone anything else. 

Whilst I have the motivation, attitude, technique and application (my coaches' words not mine) there is that ever present barrier that I have no way of getting over. Or around. It saddens me, but more it annoys the hell out of me. I hadn’t achieved what I wanted to in golf before it was taken from me. Highlights included two hole-in-ones, representing Essex Ladies, getting down to a 5.3 handicap, winning numerous competitions including the Scratch County Handicap Trophy, set a one over par course record on my home course. I was nigh on unbeatable in matchplay (that determination again). I only got to play for three or so years before CRPS struck. It is still sticking the boot in now.

All I can do is keep plugging away, keep entering competitions, shooting when I can and the best I can. If having CRPS has taught me anything it is to go for it, because you never know when you might lose that thing you love. My body might continue to let me down (I sometimes wonder which bit will go wrong next) but it won’t bring me down. I do hate losing after all….

If I was a house....

.... I'd need a rewire, simple as that. You see I had the letter from my Consultant about my recent appointment. We meet every 6 months, chat about how things are, decide that we are getting the best we going to get from meds and then part with a 'see you in 6 months'.

I am well aware that I'm far luckier than most in that my Consultant has no intention of discharging me, is genuinely interested in my wellbeing and wishes he could do more. He Is always on the lookout for anything which might help, but knows I am pragmatic about my prognosis and he can tell it how it is.

This time though was a little different. My diagnosis has changed. It is now officially:
       l. CRPS in  legs
      2. Chronic Widespread Pain syndrome
The latter is new, and means that my entire nervous system is hypersensitive. Hence my rewire quip at the start. What does this mean for me?

Well, everything and nothing really. My arms have been affected a year and a half now, my eyes have also been 'misbehaving' for many more years than that. In both cases the symptoms can't be explained by other disease, illness etc. Part of me worries about what will 'go wrong' next.

It's only natural I suppose. Here's an example. I've been suffering from a tooth/gum infection for over a month now. Surely it should have gone by now? Antibiotics helped a bit, antibacterial gel a bit more but it still isn't right. Is it going to linger for a while? Will it ever get better? Has another part of my body become affected? It would be easy to become paranoid wouldn't it? Or extremely depressed, frightened to do anything.

Not me. The worsening of my condition, spreading throughout my body changes nothing. My philosophy has always been, and will continue to be, to remain as positive as I can be. I fight everything that comes with having chronic illness . I do what I can, but my quality of life remains rubbish, stuck in this leather reclining chair with my legs up, gazing at the same four walls for days on end. I firmly believe that it is a waste of time moping, feeling sorry for yourself etc. It gets you nowhere because you're still stuck in the same useless, broken body. Make the most of what you have, that's my motto.

My biggest 'v sign' to my condition is archery of course. Anyone who has read my blog knows how much it means to me, it's an integral part of my existence, my life. I look forward to every session, and then immediately yearn for the next. I would shoot every day if my condition allowed. I push it as far as I can, but even I have to be sensible to get the best out of myself. Twice a week seems to be the optimism. Up to now I've shot against myself (trying to better my scores each time), but will be entering some competitions in the months to come.

Which brings me to something that is both utterly fantastic and utterly cruel. Recently there has been the opportunity to apply for selection to a fast track Para Archer program aiming to shoot at Rio 2016. I know some people who have applied. I did ask my coaches what they thought. Only in passing and fully expecting them to say no chance. Imagine my shock when the following came back:

'knowing how dedicated, committed and strong willed you are, there is no reason why you might not set your own goal for becoming a Para archer in the future' along with telling me face to face that I had the technique needed to compete at that level.

Wowzer!!! I couldn't believe it. I was completely gobsmacked. Me? No! Never in a miIIion years!!

But here's the cruelty of it.... They explained that for me to fully participate in the program I'd have to travel all the way to Lilleshall a couple of times a week. That's before you consider the necessary extra practice I' d need to do, shoots around the country or even abroad. And everything else that would be involved Oh, and you're only allowed an 80cm wheelchair length at shoots. Mine is 4 feet 6 inches! This was their only concern, and rightly so. It is a complete non-starter, I couldn't even remotely cope with it. Never in my wildest dreams.

To be told I have what it takes to be a Para archer means the world to me. That they feel that I'm capable. The reality of course is that nothing has changed. I can't do anything about it, but can take the positives. It is enough to know that they feel I could. That'll do for me....

The conundrum that is archery!

A bit of background for some of this post to make sense. Here goes...

Prior to getting CRPS in 2005, throughout my 34 years I'd played competitive sport. To County Level in Badminton, Tennis and Golf and club level in those plus hockey. Even at the tender age of 7 or so I was playing cricket with boys much older than myself. My grandad was the scorer for a team in the Birmingham league so many a Summer holiday was spent bowling, batting and fielding. There was talk of me being signed up for a Ladies' squad but I was getting into other sports and left cricket behind. Wonder where I'd have been had I not done that? Irrelevant now...

I'd been given my grandfather's old golf clubs and spent many an hour belting golf balls backwards and forwards across the student cricket pitch that was across the road from my house (we lived on an Agricultural college). The same cricket field I did endless circuits around to get match fit for badminton and tennis.

The sport I was actively doing in the years before CRPS put it's size 10 boot in, was golf. I'd always been a natural ball sports player so it stood to reason that golf came naturally to me. So it proved. I only ever had county organised group sessions which were useless but apart from that was self-taught. l came in on a handicap of 26 (max was 36, now 40) and within a couple of years it was down to 5.6 and still falling. Mentally really tough I was rarely beatable at match play at any level. I was totally focused, very serious and determined. Off the course or when it was just a practice round I was a bit of a joker but when I had my game face on. Well... beware LOL.

You get the idea of the sort of approach I took to sport. I detested losing with a passion. I had incredibly high expectations of myself, then beat myself up when I didn't match up. CRPS took that all away. It wasn't even a gradual loss. Bang, it was gone. The competitiveness got absorbed? hidden? locked away in my brain somewhere because that wasn't going to happen again? I wouldn't get that buzz that comes with a cracking good score or beating someone.

I grieved for the loss of doing sport and all that came with it. My sporting days were over. All the various clubs, racquets and sticks were sold or given away. It all went as I'd never use them again, so why keep them?

l first dabbled with archery about 7 years ago at a disabled social and sports club. At that point Eric could shoot as well so it was great. The distance was tiny, just across the length of a small hall but I was hooked. Sadly numbers dwindled until is was just me and Eric. We tried to join a 'proper' archery club but to say they weren't setup for the disabled archer is an understatement. Epic Fail! Instead we bought a cheap target and shot at home. The frequency became less and less then Eric broke his arm and that was that....

Until I watched archery at the 2012 Olympics and decided I had to try again. It's documented elsewhere that I found a brilliant club who are so friendly and accommodating. I started to get some coaching from the incredibly experienced Tom & Iris who are two of the loveliest people you could hope to meet. They taught me how to shoot properly, a revelation to me having only been taught the basics all those years ago. I threw myself into it, relishing the challenge of mastering what they taught me. A year later, through a combination of their excellent tutelage and a lot of b****y hard work on my part, I have developed a solid, consistent technique, which may not be entirely textbook, but is customised for me and my situation. Namely shooting in my wheelchair with my legs at 90° to my body. Much of the work has been done at home, shooting down the garden as we couldn't go out because of Eric's surgery. I've emailed Iris and Tom for advice as necessary. As I said far from textbook but it works.

The competitiveness that had lain dormant all those years raised it's head and decided to make a reappearance. As I improved and my scores got better the 'competitive me' came back. I wasn't happy shooting 5s, 6s and 7s, I wanted more. I'd only be happy when I was regularly getting 8s, 9s and 10s. Anything less was rubbish. Yes, it was definitely back! It felt good to have that challenge, that buzz again. The excitement of beating my PB. Shooting more than 50 for 6 arrows. I absolutely love archery and no sooner have I finished, I'd be looking forward to the next time.

Unfortunately CRPS has stuck that size 10 boot in again. An injury to my right shoulder was too big an invitation and CRPS moved into my right arm and fingers of my right hand. The hand I use to draw with. Well it wouldn't go to the left fingers would it? Not debilitating enough. It then dd to jump to the left arm. This has happened since March 2013 and has impacted more and more on my shooting. Further changes in equipment and technique have been needed. I have the lightest possible setup now.

As I've already said my expectations of myself have increased the more I've shot, because of my natural competitiveness. And my improvement of some 15 places in my handicap from 56 in March to 41 at the end of the season. Despite CRPS. I'd be lying if I said the ever more intrusive impact of CRPS wasn't having an impact on my shooting but more so on my mental state. I suffer bouts of intense frustration, feeling really down, despair as well as excitement and joy when I manage to shoot really well. Let me try and explain why....

How I shoot from one session to the other isn't something I can control any longer. I am literally at the mercy of my arms, riddled as they now are with CRPS. If my arms are playing up it is completely impossible for me to get into a decent position to draw. Drawing the string for those first few arrows is so excrutiatingly painful for my fingers. But it eases and I do my best. Sometimes I struggle to hang onto the string long enough to aim and shoot in a controlled way. Inevitably the arrows are all over the place, my scores are way below what I'm capable of. It's really hard work with me struggling to pull the string to full draw. You would think I was trying to use someone else's bow with a much higher poundage. lt's uncomfortable, INCREDIBLY frustrating and demoralising. My competitiveness whispers to me, telling me how useless I am. No allowances for how I have to shoot or the problems with my arms.

Of course shooting is the only thing I can do that not only is pain free and has a hugely beneficial effect on the pain, stiffness and swelling of CRPS. I have to shoot every few days, a regime which is brutal, takes so much out of me, makes my legs considerably worse but I have to do it to fight the CRPS, keep a good range of movement and lower pain levels.  So how do I reconcile the competitiveness and the need to shoot (however badly) to stave off CRPS? I have been improving continually, despite everything CRPS has thrown at me so far. It's not all good though. There have been batches of sessions that were an unmitigated disaster. Combination of arms misbehaving, shooting when I really wasn't feeling up to it and the extra demands on life as Eric continued his convalescence. 

I was hoping that now Eric's arm is healed (hooray!!!), my arms might settle down and my shooting would become more consistent and a little easier again. Instead it typically now takes half a 60 arrow round before my arms have 'loosened up' enough to shoot like I KNOW I can. Sometimes they don't loosen up at all and my left arm is as rock hard and stubbornly refuses to relax whilst my right arm simply refuses to go back for enough to use my back muscles. No two sessions are the same, I never feel 'right' at full draw somehow.

So I did an experiment earlier this week. Having shot on Monday, with a score some 50 away from my PB, I decided to shoot the following day. lt was a revelation! From the first arrow to the last I was able to shoot like I could months and months ago. I realised that I haven't been shooting properly for quite some time. I was able to draw the string across my body, maintain a good power line, use my back etc. It felt amazing and of course I scored so much better. Only 9 points shy of my PB. I was elated but then of course the reality sunk in. I can't shoot two days in a row, the payback is way too severe. So what I've proved means nothing really. It's not as if I can do anything about it is there?

I suspect that If the situation was different I could be really good at archery. Instead I'm stuck in a useless body that won't work properly. I do my best to not let the frustration get to me. The need to accept that the bad sessions aren't down to me, aren't my fault. It's my body letting me down (again) because of b****y CRPS, not letting me to shoot to my potential. 

I'm really struggling with it all. The CRPS isn't going anywhere and although archery does it good and shooting doesn't hurt, am I just putting off the inevitable? Will the sessions where I'm utter rubbish gradually become the norm? How will the newly re-surfaced competitive me cope with that? Will there come a point when I have to give up archery completely? That would be almost too much to bear. I can't go through that again, archery is so very important to me, my quality of life, my sanity. I can't see a future that doesn't feature archery so somehow I have to find a way through this. Answers on a postcard please....

Peering into the abyss...

Our worst fears have been realised.... it is CRPS causing the ongoing problems with my arm.

The most recent photo of my arm

I went to see the Physio again on Monday, armed with my pain diary and several photos we had taken during the time since the massive flare caused by the exercises/massage and the appointment.

The photos had been a huge shock to me, because I can't actually see the side of my arm, so had no idea just how bad it was. The symptoms of CRPS were clear to see. Swelling, colour and temperature changes plus a shiny sheen to the skin. Add this to the throbbing pains despite 50mg of morphine flowing round my body 24/7 and it was pretty damning. The Physio confirmed it, saying there was no way the symptoms could be explained by an injury. Especially as this has been going on since March if not earlier. Where we thought he'd found something wrong, the reaction to the treatment was over the top in the extreme.

He is going to write to my Pain Consultant urgently to refer me and hopefully they will get me in quickly. Not holding my breath though after being told I'd have to be referred as a new patient when I contacted the Pain Clinic direct (see previous blog post). I can only hope that I bypass the new patient pre-assessment for which there is a huge waiting time by virtue of the fact that the Physio has already examined, tried to treat and diagnosed CRPS in my arm. I do have the certainty of seeing my Pain Consultant in September/October as I see him every six months. Even this means yet more waiting, time which I can little afford to lose. If you stand any chance of getting CRPS into remission it needs aggressive treatment within the first three months of it starting. Anything after that and you are starting to fight a losing battle. Which is why my legs are as bad as they are. I was nearly six months before we got a diagnosis and it had already moved into the other leg and up to the knees in both.

Of course the difference this time around is that I know my enemy intimately. I am already taking appropriate medication for CRPS because of my legs. OK, they don't do a lot but any help is better than nothing. The critical thing in fighting CRPS though, is to keep the mobility, the range of movement and the use of the affected area. So much of the time before my legs were diagnosed was wasted, I was told to rest as they didn't know what was going on. Totally the wrong thing to do, as I now know to my cost. Every moment of rest let CRPS get a little worse, increasing the pain which in turn made it ever harder to do anything with my legs. I can't push through the pain at all, it is just too bad. Being realistic, the CRPS was so aggressive in my legs I doubt we could have kept it at bay, restricted it to one leg or stopped it moving upwards. But there would have been a chance, however small.

Which brings me back to my arm. Ever since the x-rays came back clear in late April/early May I worked really hard and got back the full range of movement in the shoulder and upper arm. Purely and simply by doing things with the arm regardless of how much it hurt. Pushing through the pain, refusing to let it stop me. Of course the pain never went away, it was and is always there in varying degrees but when I first saw the Physio he was extremely impressed with the 'superb range of movement' I had.

With the benefit of hindsight, trying to treat a problem with the deltoid tendon was the worse possible thing we could have done. After a few days I couldn't do anything at all with the arm, it was horrendous. It felt like I'd lost all the strength. I couldn't stretch it out sideways, forwards, lift it up or anything. The pain was completely off the scale, Oramorph didn't help, I could do absolutely nothing for myself. It was like a massive CRPS flare, which, looking back, is of course what it was. The exercises were stopped and I was told to completely rest it. No archery, no moving the arm above shoulder level. For the next day I could do nothing else but rest it and it settled a little. Me being me, over the next couple of days I had to gently try and move it a little bit. And then a bit more. I started to get the strength back (which of course I'd never lost, I just couldn't use it because it hurt too much), could lift my iPad up for example which is on the table next to me and it was a bit better when Eric helped me out of my chair (I push up whilst he pulls).

Of course I had to do some archery, if only to see whether I could still do it. So a week after stopping the exercises I shot two dozen arrows. Completely pain free! It was a wonderful feeling and seemed to improve the arm if anything. Meanwhile resting it just increased the swelling, the colouring and of course the pain in the arm. Should I do as the Physio advised and continue to rest it completely or do what I felt I should do, namely keep it moving? Of course I did what felt best and so worked on pushing through the pain as I had before. Which is where I am now as I write this. The arm still constantly throbs, becomes worse when it's moved and recently hurts more when exposed to airflow (not very helpful when you have a fan on because it's so hot).

The reality of having CRPS in a third limb has sunk in a bit and I'd be lying if I said I didn't feel a bit fearful of what the future will bring. What if it continues to get worse or moves down the arm? Moves to the other arm? Life is of course going to be harder because I can't support myself as I could, I am ever more dependent on Eric. I am more restricted in what I can do, for example gardening. I used to do loads of stuff in the raised beds, will I still be able to carry on doing that? I worry even more about my weight because I am less active than I was and can't see a way of doing anything about it. Using the Wii to play tennis is out, too much for the arm. I can't believe my luck that archery seems to be the perfect activity but how long will that last? Will archery become impossible at some point? When I eventually get to the pain clinic will they be able to do anything with the arm (nerve blocks etc) bearing in mind everything failed miserably on my legs?

I could go on, but what's the point? It doesn't make my situation any different, so it's a waste of energy. The future will bring what it will. No, I have to concentrate on what I can do now, the positives. Continue to push through the pain, fight to keep the function I have in the arm, the range of movement. It will no doubt flare just like my legs do, but since when has that ever stopped me?  I will do everything I possibly can to keep the CRPS at bay. Continuing archery is a given. Of course!
Come on CRPS, do your damnedest!!!

Please let there be something wrong!!

This coming Tuesday (25/6/13) is rapidly becoming judgement day. That's how it feels anyway. My right arm has been causing me 'grief'' since March or even earlier. I have mentioned it before in my blogs and on Facebook. Was it archery that caused the problem? Probably, even though bizarrely, actually doing archery never hurts in the slightest. It started with pain in the top of my shoulder and upper arm when I moved it, and led on to reduced movement in my both my shoulder and upper arm. The back of my arm above the elbow was also painful to touch or lean on. It wasn't unbearable pain, but it would 'catch' when I moved it, especially if trying to pick something up from the table next to my chair. There were brief periods when even the slightest movement of the arm was impossible because it was so painful. These were short lived and seemed to right themselves so we wondered whether a trapped nerve was the problem. On the whole though the morphine I take masked the pain reasonably well. That said it was baffling how my arm could be so painful when I constantly have 50-60mg of Morphine onboard constantly, anti-inflammatories and everything else I take for CRPS. What on earth was going on?

Of course life became much harder. I found it really hard to press down or pull with that arm. A problem when you need your arms to support you at all times. Getting up the stairs which is completely reliant on my arms pulling me became nigh on impossible. Essentially anything that needed me to push or pull with my right arm became much harder and hurt in varying degrees. Supporting myself was restricted to my left arm, my mobility compromised even more. Eric has been amazing as always, providing even more help than ever, doing even more for me.

We were starting to worry that there was something seriously wrong with the arm. Stress fracture? Frozen shoulder? I went to see my GP, who decided to send me for x-rays. Two weeks later (yes really!!!) the appointment to have the x-rays arrived, and seven separate x-rays later we headed home. When the results came back there was  nothing wrong so my GP said he would arrange for physiotherapy. The 'you can now phone us for an appointment' letter took weeks to come and the first appointment they had was over a month away. Utterly useless but what could I do? Forced to wait I had to get on with having one decent limb. I started to use the arm a bit more despite the pain, safe in the knowledge that there wasn't anything seriously wrong. 

Archery actually seemed to loosen everything up a bit so I have continued shooting throughout. Unfortunately my draw began to get worse and worse. I couldn't get myself into a good position, properly lined up etc so my accuracy and consistency plummeted. Sometimes I couldn't even get the arrow on the target let alone in the gold!! Not good at all. I simply couldn't cope with the bow as it was, my injured arm was clearly struggling with the weight of it or the poundage I was pulling. So I took action. Out went the twin rods and v bar on my bow, together with the 28lb limbs. The latter were replaced by 26lb limbs and I now have a very short long rod (just 19" compared to 28" I was using) courtesy of Iris and Tom.

Two 10s and a 9 - I can still do it!

The bow immediately became so much easier to deal with, I could now get myself into a better position but my accuracy only improved slightly and then went downhill again. I was missing the target again. I had obviously been compensating for the limited movement/strength in my right arm because everything was going miles left. My wonderful coaches Tom and Iris diagnosed the problem within the space of 4-5 arrows (my left shoulder was too high). I've worked on finding a method to keep the left shoulder down with the longer term aim being that I can shoot completely free of pain regardless of how many arrows I shoot and with further stabilisation on the bow. It seems to be working well judging by these arrows that I shot earlier today....

So where does Judgement Day come in?
Well, in the last couple of weeks, my upper arm (below the shoulder) has started to throb with pain, gradually getting worse and worse. Doesn't matter if I move it or keep it absolutely still the throbbing continues. It is very swollen, and the skin has taken on a purple, mottled appearance. It is often colder than the other arm and moving it is impossible due to the pain on occasions. Added to the never-ending pain and the other nonsense in my legs I have been sweating uncontrollably, been constantly exhausted and incapable of doing anything. I have had to take Oramorph as much for the arm as my legs which together with all the other symptoms is extremely worrying.
Why? Because those are some of the things that happen in my legs. Which means there is a realistic chance that although the injury has healed (I now have full range of movement again), CRPS has moved or at the very least developed in my arm. This has enormous implications that I really don't want to consider too much right now. Needless to say the thought of being as I am now (with only one decent limb) permanently is pretty grim. I will carry on fighting as always but the battle would be all the harder.

So, strange as it seems we really want the Physiotherapist to find something wrong with my arm on Tuesday. Because if he does this means it can't be CRPS. We can get it better and then it is just my CRPS riddled legs to contend with. Life can get back to normal. Well as normal as it gets for me anyway......

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....