When is a life no longer worth living?

IAnyone suffering from a chronic illness will at some point or other have asked the question 'why me?'. I am no different, indeed in the last few months I have been thinking this on a regular basis. The other one is 'what on earth did I do to deserve this?'. Of course there are no answers to either, it's just a case of how the dice rolled. In my case the odds were awful.

As I sit here, writing this I now have CRPS in both lower legs, eyes, upper arms and mouth. CRPS is a condition that I wouldn't wish on anybody. Cruel, sadistic almost, it can strike anywhere, and in my case it feels like I'm under siege. Not content to stay where it started, in my right foot, it just keeps on coming, always getting worse. No remission for me, that would be too much to ask.  It does what it wants, when it wants. It is so hard to keep going, let alone stay positive when you are trapped in a broken body that constantly makes doing anything harder or even impossible. What do I have to look forward to? What does the future hold? What state am I going to be in, say, 2 years? Or 5? I learnt long ago that it's better to stay in the moment. Get through each day and move on to the next. Sadly it isn't that easy, especially when you feel the limited quality of life you have is slowly but surely being dragged from under you.

When it struck in December 2005, CRPS stripped me of everything that defined me. Within six months my life bore absolutely no resemblance to the active and busy life I had before. I didn't set foot in a classroom again. Ironically I'd just gained promotion at a new school that September. I couldn't play golf, go swimming or even drive my car. Instead I became completely dependent on my husband for anything and everything. The independence I had taken for granted gone forever. I can't even remember what life was like back then. There was no point dwelling on the past so I moved on and tried to build a new life for myself. 

So what is my life like? Well, I can't go anywhere on my own, can't even get out of the chair that I live (and sleep) in. Can't look after myself, let alone Eric and our dogs. I rely on ordering the things we need online because going shopping is simply too difficult. On balance it, like so many mundane activities I used to take for granted, are frankly not worth the pain and struggle to do anymore. Let alone the inevitable escalation of pain, swelling, exhaustion and everything else that follows in the days that follow. Spontaneity is a concept that no longer has any meaning for me. Everything is a military exercise, from getting dressed, sitting on the commode, dragging myself upstairs to have a bath to somehow getting from the house to the car if we go out. Everything is an ordeal and takes ages because of the help I need. Frustrating doesn't come close! Of course, going out means I have to get dressed and sit on the commode before even thinking of trying to get out to the car. It is sheer bloody-mindedness and a determination not to be beaten that results in me doing anything at all. 

There aren't many things I can do these days being confined to my chair all day every day. I play video games whilst my husband walks the dogs. I read, watch television, knit and potter about on my iPad and MacBook. Then of course there are the two real passions in my 'new' life, speedway and archery (which I can do sitting in my electric wheelchair with the elevating leg rests up).  

I'd never been to a live speedway meeting before I got CRPS. One trip and I was hooked. There's nothing better than hearing the roar of the bikes, the characteristic smell of methanol, and watching four men zooming around a track riding bikes with no brakes at speeds up to 80 mph. A heat typically lasts about a minute depending on the size of the track. Not long, but boy can a lot happen during those four laps. Incredible skill, daring, you find yourself shouting as loud as you can for your team's riders, totally engrossed in the spectacle in front of you. I looked forward to every meeting even though it took a hefty toll, the pain both at the time and for days afterwards was so much worse. I'd lose several days to sleep and then have to do nothing until the next meeting so I was 'at my best'. But I'd be there every meeting come what may. Eric, bless him, never refused to take me even when he knew it was utter madness. There's that bloody mindedness again. CRPS wasn't going to stop me.

I love archery, the only sport we could find that could replace the sports I'd lost. I'd always been sporty,  playing badminton, tennis, hockey, golf for club or county (or both) pre CRPS. To not be able to take part in a sport was unthinkable. Exercise when you can't walk but can't shove your legs out of the way (like those who are paralysed can) is extremely difficult. Archery fits the bill perfectly, and I was surprised to find that I was pretty good at it too. A wonderful bonus was that archery also seemed to help my arms. Not for long but it did. The competitive me that had laid dormant so long returned, I entered a few local competitions and won some medals. Again the price I paid for shooting was brutal and lasted days after I'd shot but CRPS wasn't going to stop me doing this either. 

Except CRPS has stopped me or it's doing it's best. It feels like I'm slowly being stripped of my life all over again. I can't go to speedway meetings anymore, I can only watch it on television or YouTube. The decision to stop going was so tough. But I had no choice, I simply couldn't cope with the pain during the meeting nor the crushing payback that followed. I'd kept going longer than was sensible, but, me being me, I had to keep going until I simply couldn't anymore. That must be at least seven years ago if not longer. I now watch as much speedway as I can, having even had Polish satellite television installed so I could watch that. It's not the same, but it's better than nothing. Well, sort of, but it's all I've got.

If I read a book or use my tablet/MacBook too long or try to play my video game just that little bit longer CRPS puts the boot in. I sweat profusely, my eyes become incredibly painful, I feel sick and the only thing I can do is stop and rest. Sleep is inevitable, stripping me of part of each day. Sometimes I'll lose and entire day to sleep. I can't get that back. The only good thing about the amount of time I now sleep is it means I'm not in pain. Until it breaks through again and wakes me up. I regularly wake up with blurred vision, payback for my 'crimes' either earlier that day or the day before. The length of time I can do things has got ever shorter as time has gone on. I leave it to you to imagine what I went through filling in the horrendous forms the DWP send you to fill in to prove you're disabled enough to deserve benefits. Not helped by a GP who took five months or more to get a medical form back. Result? I now have the stress of getting to an assessment somewhere which will be stressful, painful and exhausting.

Archery doesn't escape the tendrils of CRPS. It remains an ongoing battle. For a while I was more likely to hit the wall than the target as my arms refused to get into a good position. I had to gradually rebuild my draw but by bit, which was a challenge. I found a slightly different way which improved things and started to shoot better. I used to be able to reach a 80 yard target. I can't raise my left arm high enough. Now I'm focussing on just 20 yards. I've only been over to the club's field twice this year. Says it all really. What does the future hold archery wise? Will CRPS take that from me too? I don't think I could bear that.

Disaster struck. A massive flare in my right arm back in June left me unable to move it at all. Oramorph on top of the 55mg of Morphine MST constantly flowing round my body , plus 14 others, didn't touch it. I struggled to do anything with it, needed even more help with everything like dressing. Eric even had to pass me a cup of tea from my table. I couldn't shoot, my arms had no chance of getting close to the position I'd need. I was distraught. Couldn't knit. Even holding a book was too difficult. I had to just sit in my chair covered with my blanket with my arm placed as comfortably as I could get it. Over the next few weeks I fought to get some movement back, managed to shoot a few arrows. Then a few more. I haven't got it back to where it was, which of course means my quality of life is that little bit worse. Yet again CRPS has taken a little bit more away. 

It has brought my future uncomfortably into focus. I always knew the affected areas are only going to get worse as the years go on. Spread even further perhaps? But so soon? Not being able to do even the simplest of things now? Not only is that scary, it's totally overwhelming. I admit that I've had some very dark thoughts in recent weeks. What next? Where is it going to end? If I can't shoot, knit, hold onto a video controller long enough to play more than ten minutes before I have to stop? Can't use my MacBook usefully, or my iPad? 

It's taken me so long to write this because I can do so little at a time. Many times I've thought about not finishing it. But then again that's another concession, a bit more ground given. Which brings me right back to the title of this blog post. When is a life no longer worth living? How much does CRPS have to take away before your quality of life just isnt worth the mental and physical battle just to get through one day. Forgetting the next, and the one after that and onwards month after month, year after year? I don't thing anyone knows the answer to that until you reach that point. Let that not be some time to come.....

Postscript: Yesterday I had another massive flare in my right arm. Back to not being able to move it, trying to find a comfortable position where none exists. Here we go again.

Apologies for errors, spelling mistakes. I've not checked it.

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! 

Officially broken but new medication to try!!

Today I had my six month(ish) review with my Pain Management Consultant. It's the only time I get to discuss my condition as my GP has no involvement in deciding my treatment. He prescribes what he's directed to and deals with anything else. It's not ideal but I'm grateful that it's set in stone and if I'm desperate I can email them and someone will get back to me. 

It was a strange appointment. As always he let me talk, asking extra questions and clarifying things as I went along. I talked about all the various things that have been going on, including the problem with extracting my tooth. He wanted to know more about my arms which I talked about (basically that they have gone down the same route as my legs). I even mentioned my constantly salty tasting mouth, which Eric had written down on our list, but I didn't think was relevant. It's been like it for a few weeks now, coupled with an increasingly worse dry mouth (which I've had for years).

I said that I didn't think the tablets were as effective and that the continuous burning sensation down the front of both legs for example was worse than before. I try desperately not to take Oramorph other than at night (combined with several other drugs) to help me sleep when we eventually turn the lights out at 2am or later. He agreed that that was a sensible approach. Bonkers really when you think that I lose complete days to sleep and only recently was falling asleep whilst eating a bowl of cornflakes!!

The depressing conclusion is that everything, even the ruddy salty taste in my mouth is partly or entirely due to my nerves not working, misfiring or whatever because my entire nervous system is so totally and utterly broken. Add side effects and it becomes blatantly clear why things are getting worse and more of me is affected. One thing's for sure, if they do ever come up with a proper treatment or cure for CRPS it's not going to be much good to me. Having said that I can't see that happening in my lifetime anyway. Does beg the question though, what state will I be in five years from now? Ten? Of course I can't think like that, nothing has changed from before the appointment, I just understand what's going on a bit more. 

We inevitably discussed medication and my condition. It's a team effort which is brilliant, he is more than happy for me to bounce ideas and questions off him. He is incredibly honest and knows that I know exactly what my situation is. A lot of the time he just admits that 'he' (the medical profession) doesn't know. Trouble is there's not much out there and what there is doesn't really do anything for me. Pregablin did quite well but affected my liver function so we had to stop it. We found something else that sort of did the same job. Well better than anything else available anyway. The other medication that helps is morphine. 

At this point he suggested Tapentadol which is an opioid like morphine but acts differently and therefore might do a better job. Oh the excitement!! The chance to try something new, that might do something more than morphine does. I don't care how small that improvement might be, anything would be wonderful. It will take five months to transfer over completely to the new drug, replacing some morphine with some Tapentadol each month. That’s assuming I get on with it and there aren’t hideous side effects. I’m booked in for a review with him in three months. Fingers crossed.

Summing up - As the saying goes ‘With pleasure comes pain’ 

Things are far worse than I thought. I can develop all the joyous symptoms of CRPS anywhere, my nerves can and will act oddly, too sensitively or just fire for the fun of it. Basically my nervous system can do what the h**l it wants. That’s definitely pain whichever way you look at it. 

BUT, for the first time in a very long time we are trying something different which may improve the pain control. It might be marginal and it will take a long time to make the change to minimise withdrawal and side effects. At the end I may be no better off, but we have to try. You never know there might be some pleasure in the form of less pain.......

I am really, really broken

I've been struggling mentally recently, an inevitable byproduct of living 24/7 with the pain, burning sensation, hypersensitivity and everything else that CRPS throws at me. As is so often the case I turn to my blog to try and work through what's going on in my head.

My 10 year 'wedding' anniversary with CRPS will be on 16th December, Notice I still remember the date? That's because it really was a monumental day in my life. The day my life changed forever. The day I started living with a condition that never gives me a break, is constantly 'getting' at me and affects every aspect of my life. And like a really bad marriage it's changed over time, being ever more intrusive, affecting more areas of my body, gradually reducing not just what I can do but how long I can do things for. But unlike normal marriages I can't get a divorce, we're stuck together for the rest of my days. There's no cure, they don't even have an understanding of what CRPS is or why the nervous system effectively 'turned' on me all those years ago.

It's so demoralising the way CRPS impinges on everything, making completely unrelated events considerably worse. It even caused problems with the tooth extraction I had several weeks ago. The same tooth developed an infection about a year ago and recurred again a month or so ago. It was time for the tooth to go. Despite injecting three separate lots of lidocaine into the gum around the tooth, the dentist couldn't numb the area properly. I told her to go for it, and subsequently felt every movement of the tooth as she loosened it and then pulled it out. Not to be recommended I can tell you, but it was the only way it could be done. Hypersensitive nerves made it so much harder for lidocaine to work. It hadn't occurred to me that CRPS would be an issue. Is there nothing it doesn't make worse?

I never seem to have anything even vaguely resembling a good day anymore. It just a case of how bad am I going to be, how much of the day will I lose to sleep, how badly will I sweat, or conversely feel frozen? We can't plan to do anything really because you can never tell how I'm going to be. If I have to pull out something it's never because I can't be bothered or don't fancy it. No, it's because I literally don't have the energy to get dressed let alone anything else. Or the pain is just too bad. The other day I was falling asleep whilst eating a bowl of cornflakes. I kid you not....

I can say, without doubt, that my arms have worsened. My driving days are coming to an end. Not that I drive very much anyway, once in a blue moon really. The car is fitted with hand controls, but my arms now become more and more painful the longer I hold the steering wheel. The left arm isn't really doing anything but it becomes unbearable very quickly. Just something else CRPS is trying to take away from me. The one thing that I will continue doing, no matter what, is archery. Thankfully it still acts as great physiotherapy for my arms. Plus there are the mental benefits. It gives me something to look forward to, immense pleasure to do, and a constant challenge. It keeps me sane, it's as simple as that . Plus it's nice to still be good at something.

Reflecting on what I've written is it really any wonder that I'm struggling mentally at the moment? I don't know what I'd do without Eric, he is my rock, my reason for living and the reason why I can't give up. The dogs are wonderful, so loving, funny and always ready for a cuddle. I have to keep fighting, stay positive and continue pushing back at it's relentless assault. I owe it to Eric and to myself. Life might not be what I thought it would be, but I have to make the most of it. I think I've got my mojo back.....

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....