Life has to go on...

This is the first blog post I've written since 29th September which I have just read again. I was talking to Bella, struggling to come to terms with my grief, still raw, the gaping holes in my life so obvious and seemingly never to be filled. It's been a tough time since that awful day in August last year when letting her go was my only option, with no time to prepare. Over twelve years as my canine soul mate, gone less than a day after that awful diagnosis of an aggressive tumour in her spleen.

 Any joy I extracted from a life so decimated by chronic illness seemed to disappear with her. What was the point? I felt like an island, sitting alone in my chair, day and night, with only the occasional visit from Kai and Izzy. The worst time was at night, especially when we turned the light off. Without fail Bella had always come for a cuddle, somehow turning herself round on my chair so she would have her head resting in the crook of my shoulder. She'd lick me like mad. I'd fall asleep with her in my arms. She sometimes got off, but should I wake up, usually because the pain broke through, a whispered 'Bella' and she'd be back on my lap in a flash. Now there was nothing. The other three have always slept on the sofa in their usual places either side of Eric. Somehow that just made it worse. Many nights I'd sit in my chair silently sobbing for my beautiful girl who helped me get through life.

  

I was in a dark place, thinking the darkest of thoughts. My pain levels were worse than ever, partly because mentally I simply couldn't block out the pain as well as normal. I couldn't focus, didn't want to do anything, even archery didn't give me the pleasure it usually did. Eric, as always was my rock, he knew how I felt as he'd feel the same if it was Kayla.  Every so often I look up at her photo hanging directly opposite me and talk to her. Some of you will no doubt think it's odd, perhaps mad even, to talk to a dog. But she was my best friend, Eric aside. Part of me was ripped away when she died. I honestly don't think I'll ever get over her completely, such was the bond we had.

So, what's changed?

There are several factors. Time is a healer they say, and in many ways its true. That awful physical loss hasreduced but not gone entirely. The fact I have a picture of her hanging on the cabinet opposite helps. I used to spend ages looking at her, talking to her, saying morning and good night. I still look up at her, talking with her as I would, were she here. Her memory is a permanent. That photo will remain there as long as I'm here.

Much of the credit goes to our four month old Miniature Schnauzer puppy called Millie. Eric wanted another one, to join Kai and Izzy. The breeder had a white litter coming along in a couple of months. I googled photos and was smitten. So, mid November, Millie joined us.

   

I tried really hard to get to know her, lay the foundations for a friendship, just as I did with Bella all those years ago. Initially it didn't seem to get me very far. Eric would have to lift her up, partly because of course she couldn't get up, but also because she didn't seem interested. Certainly not to stay for more than a minute or so. Day after day Eric would have all four dogs on the sofa with him. I remained the island, any hopes that a new puppy would help fill the void left by Bella in tatters. The excitement I felt when we got her turned to despair, and even anger. It wasn't fair!! Slightly irrational I grant you, but when you've dared to hope when already in a dark place it felt like a body blow. The darkness rubbed it's hands in glee.

She has slept on my lap from the first night we got her. But then she'd get off and I'd be lucky if she came back the rest of the day. Play proved to be the acorn. Turns out that Millie is driven by play. I put my legs down, picked up a toy and threw it. Off she went, fast as her little legs could go, picked it up and brought it back on the duvet ready to go again! An utter natural but it meant I could 'do' something with a dog again. My spirits started to lift a little. I'd already got as far as training her to jump onto the lowered leg rest of my chair so we added 'paws up' to get her to put her paws up the side of my chair so I could lift her. She quickly adapted to bringing the toy back to the side of my chair, as near to my hand as she could. Suddenly I was regularly seeing a little head appear at the side of my chair or at the bottom of my legs. 'Can we play mistress'. It was wonderful, although I exhausted myself and made my legs worse but I was determined to play whenever she wanted. The acorn was growing and with it the darkness was abating. Life felt that little bit better.

In the last few weeks everything has changed. Millie seemed to decide she liked it on my lap where she had a captive audience. She now spends pretty much all her time during the day on my lap, sleeping, playing tug and anything else we can try. I can't put into words how life changing it is. At first I thought surely I can't be this lucky, but several weeks have gone by and she's still here. No dog could ever replace Bella but I think she'd be pleased that I have another canine carer. Life is good again. 

I do seem to have my Mojo back. I've certainly got the oomph to take the fight to CRPS again. I will do things despite what it costs me in pain both at the time and the inevitable payback a day (or few) after. Already my enthusiasm for archery is back, I'm shooting more regularly, and better than I have in ages. Coincidence? I've nearly finished all the pieces for my first jumper, a real achievement when I can only knit for a short time in the evenings. I'm reading books again and looking forward to the new speedway season.  

In short, life does indeed go on, and I'm looking forward to it...

    

Yesterday I lost my best friend

This is Bella, my 12 year old Border Collie. I thought I'd have several more years with my girl. Never in a million years did I think this would happen and she'd be taken from me so suddenly. Life is truly shit, cruel and downright heartbreaking at times. It's so unfair, especially for a dog as special as Bella.

What are the chances that she'd get cancer? Worse, that it would be a tumour on her spleen which could have ruptured at any time? Literally a ticking time bomb. Aggressive too, so it would most likely have already spread to other organs? And to top it all, the only symptoms she had which ultimately led to it's discovery were snoring noises as she breathed out. She was given a clean bill of health by another vet at the practice just over a week ago for heaven's sake!

Had a long chat with the vet on the phone on Thursday night, and the more she said, the more my heart sunk, the implications slowly penetrating my brain. There were options of getting a second opinion, a CT scan to see if and where it had spread. She couldn't take a biopsy because she was frightened of causing a major bleed. It was obvious she didn't want to go in and remove the spleen without knowing the full picture. 'I could open her up and be faced with tumours all over the place'. The prognosis for dogs of her age, especially this cancer, is extremely poor. Even with the CT, removal of the spleen and then chemotherapy, she wasn't going to live more than a few months. With the pain, side effects of chemo, plus of course the significant fall in her quality of life would be awful. If anyone knows about living like that it's me.

To be honest, the decision to let her go now was a no-brainer. It was obvious that the ultrasound and lack of fur 'padding' had left her extremely tender. It broke my heart to see her pace around, unable to settle. She couldn't even lie on me for more than a couple of minutes. The vet had said that she couldn't go for a walk, jump on the furniture, go up the stairs for fear it could cause a rupture. No, my girl needed me to step up to the plate and take that pain and suffering away. Anything else would be a betrayal of the unique bond I had with her.

She has been so much more than 'just' a dog. She was actually bought for Eric, but bonded to me. We adored each other, she was so sensitive and looked after me, being ever-present, never straying far from me. She would lie across my lap, not a simple thing for a dog her size, yet she very rarely touched my legs. Fiercely protective, she would warn Kayla away, not letting her anywhere near me. Eric aside, she was my best friend.

Having a cuddle with my girl. Such a precious memory now.

If I woke in the night, a whispered 'Bella' and she'd be up on my chair in moments. Always ready for a cuddle, licking me like mad, tail wagging. That wonderful affection is something I will never forget. This photo says it all really. Over the years we must have snuggled up like this thousands of times. Writing this now, all I want is to have a cuddle with her. But I can't and never can again…

The support went both ways. If anything happened to her, no matter how small, she'd come running to me, leap up and wanted me to make it better. We looked after each other, a team, bound by love. Her intelligence meant she adapted to my limited mobility. All the play we did before CRPS struck, we found a way to continue to do in my chair. Be it playing tug, fetch or rough and tumble with a toy. Her favourite toy was always a squeaky boot which was kept on the shelf behind my chair. She'd stand in front of my chair staring at me, waiting for me to look at her. I knew her so well, those beautiful eyes, one brown, one blue, told me what she wanted. I could say 'what do you want' and her eyes would immediately look at the boot then back to me. Amazing really, how many dogs can do that? I could ask her to go and find her boot. Off she'd go, looking for it. She'd ask for a treat in a similar way. I'd say 'you'd better go and ask your master' and she'd immediately jump on the sofa, sit next to Eric and paw at him. None of it taught, just that bond again. My clever, clever girl!

I'd always walked the dogs with Eric before CRPS put paid to that. Too painful because of the uneven ground and the payback was horrifiic. She didn't really have much to do with Eric, except in the morning. She would shadow him mercilessly, following him everywhere until he got ready to take them out. I did go a couple of times, Eric driving the dogs there, me going down there on my own in my chair. This meant we got onto the field in different places. I will never forget the moment Bella heard my calls. She couldn't have got to me any faster. Full pelt across the field, she jumped up at the side of my chair tongue hanging out, so obviously pleased to see me. Another precious memory to hold onto.

Just like I felt seeing her uncomfortable and in pain, she couldn't cope if I was particularly bad. Pacing around, obviously distressed, even taking herself off upstairs when my eyes were so bad I kept being sick. But she'd be back on my lap soon enough, her just being there, making it a little easier to bear. She never stayed upstairs whilst I had a bath. But she'd be there at the bottom of the stairs waiting as I struggled down and back to my chair. Then she'd jump up, lick me and have a cuddle. I'd turn her round, say 'snuggle' and she'd rest her head on my arm and sleep, both of us content. It never really felt right when she wasn't up with me. It definitely doesn't now.

I miss my best friend, life will never be the same without her. I've never had a relationship as strong with any other dog. All I can do is hold onto the thought that she had a wonderful life, didn't suffer and is now at peace. It was an honour and privilege to be Bella's human. She passed with her head resting on my hand whilst I stroked her muzzle. Together at the end, there for her as she always was for me.

My wonderful, beautiful, caring girl. I couldn't make it better this time, but I did the best thing I could. You will be in my heart forever and I will never forget you. Goodbye my darling.....  

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....

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?

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....