Thursday, 26 November 2015

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! 

Thursday, 15 October 2015

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.......

Sunday, 6 September 2015

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.....

Monday, 17 August 2015

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...

Thursday, 9 April 2015

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....

Wednesday, 18 February 2015

The problem with being disabled

I've had CRPS over nine years now, and I've lost count of the number of battles we've had to fight during that time. Anything from getting the benefits I'm entitled to, securing ill-health retirement through to being able to take a full part in the very limited activities my condition grudgingly allows me to do. 

It's hard enough getting through each day, making the most of what seems to have become an ever decreasing quality of life. Mentally you try and stay positive, regardless of what life throws at you but there are times when it all becomes too much. I'm going through one of those phases right now. The pain and exhaustion are too much, I'm losing entire days to sleep and feeling frustrated, angry and demoralised about the situation I find myself in. On various levels. 

The problem with being disabled is that it isn't just the physical and mental effects of your condition you have to cope with. It's trying to live in a world that's set up for the able-bodied. As a wheelchair user I live in a world where there are barriers everywhere, nothing is easy and spontaneity is impossible.

Take something as simple as getting about. If we didn't have our own car, travelling anywhere would be a huge challenge, largely insurmountable. Public transport isn't an option. I can't catch a train locally as there's no wheelchair access to platforms at my local railway station. There isn't a bus stop close enough to be practical. No idea where they go either and could I access them anyway? We could use a taxi service but I dread to think how much that would cost. How many wheelchair accessible taxis are there out there? No, your own transport is essential. Particularly when you need as much help as I do.

Of course getting somewhere is just the first step. Can you actually get in? Do they have wheelchair access? Are the rooms big enough to allow a wheelchair like mine to get in and close the door? Take my dentist as an example. It's like an obstacle course trying to get into the consulting room, Eric has to manhandle me around to try and get round the tight corners. It's totally unsatisfactory to be honest and an able-bodied person wouldn't put up to with it and most likely kick up a fuss so that something is done. As a disabled person we are expected to be grateful that they attempt to accommodate us at all. God forbid we should complain. Or challenge the natural order.

The same goes for shopping. We can only go to covered shopping centres because paving slabs have a tendency to be uneven, and each bump induces more pain. This leaves us with Lakeside, which isn't the most inspiring place but at least they used to have places where you could get a coffee and a sandwich/cake and sit at a table, having rearranged the furniture so I can reach the table. Since the refurbishment there is now nowhere in the Food Court that I can can sit at easily. Fixed benches, or seating areas that are so small I couldn't get into them anyway. There's no point complaining as there's nothing they can do. We eventually ended up in Costa Coffee as that was the best solution we could find. It may seem pathetic but that's always the highlight of the trip for me, having a coffee and a cake. A treat. Is it too much to ask that we can just go and do that like everyone else? Unfortunately not...

Inevitably you end up not going out because it isn't worth the pain and payback that follows. So then it's just medical appointments that come up in your diary that give an opportunity to leave the house. At least hospitals generally have decent disabled access. Why should I have to give up on going out just because I'm in a wheelchair. I'm sure able-bodied people are thinking 'it can't be that bad, she's just making out that it's worse than it is'. I wish that were true. But other disabled users will back me up. For heaven's sake the assessments for benefits are often held in buildings with no proper access. How can that possibly be right? So you go for an assessment but then can't get in to have it. And you'll probably receive a sanction to rub salt in the wound. Madness isn't it? I face similar issues every time we try and go somewhere. 

Archery is massively important, being the only activity I can do in my wheelchair with my legs up. It is good for me both physically and mentally. I look forward to each session and have thoroughly enjoyed taking part in my first competitions indoors. I want to do more, especially as we move into the outdoor season. Of course I can't do many because I simply couldn't cope with it. The recovery time is long and the payback immense. That isn't going to stop me, but even here things aren't simple.

Bizarrely, in the archery world I'm not classed as disabled. CRPS isn't on the list of conditions they use to determine disability so classification is a non-starter. So I can't take part in disabled competitions. My only option is to shoot against able-bodied archers. No problem you'd think? I'm at a disadvantage, but at least in the rules it states that you can use a wheelchair and stay on the shooting line throughout a competition. Guess what? My wheelchair is too long so I fall outside the scope of that too. So that rules me out of shooting in many able-bodied competitions as well. 

It seems for the purposes of archery I'm too disabled to be classed as disabled. Fortunately the governing body is issuing me with a card that means I can shoot as long as the club organising the shoot can accommodate me and my chair. I'm extremely grateful that they are prepared to do this for me, but should it even be necessary? A wheelchair is a wheelchair regardless of length. A condition that renders you unable to walk more than a few feet even if supported should surely qualify you for disabled status? 

It would be so easy to give up, faced with an uphill struggle to do anything or go anywhere. A world that in many ways only pays lip service to the concept of disabled access, and equal rights for the disabled. Sadly you come across discrimination everywhere. In the most unlikely of places. All I can do is battle on, fight my corner and make the best of it.  After all giving up just isn't me is it?