There’s always something to try

Can't remember the last time I wrote in my blog. It doesn't really matter, my health and living conditions remain largely unchanged. My body remains riddled with CRPS affecting both lower legs from the knee down, both upper arms, mouth and eyes. Recently added to the list of ailments are gallstones and a fatty liver. Cheers for that! My mobility remains dire, only managing to shuffle along in the arms of my husband for a few metres at most. Essentially housebound, I only leave the house to go to medical appointments these days. I am stuck in an electric reclining chair 24/7, going to bed as is the norm I believe (heavy sarcasm) is out of the question because it would only ramp up the pain to an even more unbearable levels. My legs are elevated constantly to minimise the pain as best we can. This makes doing anything harder, especially as my upper body has to take the strain. Everything has to be brought to me, housework, cooking or any normal activities are impossible. I have very few hobbies, as I will explain below.

I'm in constant pain, need to be kept covered (arms and legs) by at least a thin blanket otherwise the air movement (no matter how small) in the room makes things worse. Swelling is hideous in all affected areas but my feet in particular look truly disgusting. Purple, blotchy, abnormal nail growth and my toes are curved over to the point I can't see the nails on the right foot at all. The swelling around the outside of my ankles force my feet to point inwards. I can't straighten the right foot nor move the toes more than a slight twitch. I can't push through my ankes or knees, too painful, and struggle to pull or push with my arms. CRPS in the mouth means injections don't work so I had to have a tooth removed feeling every movement she made. Not the nicest of experiences.

I feel stabbing pains in all affected areas, pins and needles that are off the scale plus any other type of pain CRPS decides to throw at me. Eric doesn't know he's even glanced me but it feels as if a knife has been stuck into that area. The sensation remains long after the event. Hypersensitivity makes normal life a literal minefield. Bath water which to Eric feels cold, to me feels like it's boiling hot.  Oh and my limbs can be frozen blocks of ice or burning coals. Or one of each (I kid you not). This can last for many hours or days before inevitably flipping the other way. Just because they can. I get no say in the matter. We can't try to speed the process using hot water bottles because my body reacts in an extreme manner. Enough, you get the picture.

So, it would be incredibly hard to argue that my quality of life is anything other than dire, because all of the above make doing anything at best challenging and at worst completely impossible. Don't forget I've had this 'sentence' for 13 years come December so it's an old enemy, one that is in your face constantly. If I do anything I'm 'punished' by what we call payback. Essentially the pain, swelling and everything else worsens dramatically for hours, a day and sometimes more. Great isn't it? You just can't win but you can fight, which I do every day.

I don't think it would be normal to not suffer bouts of depression faced with what I am on a daily basis. I have at various times sunk deep into the darkness where those thoughts of suicide lurk. Hell I've even thought exactly how I'd do it and when. I'm writing this so safe to say things have never come to that. It would be a blessed relief if I'm being brutally honest, but I couldn't do it to Eric so here I am. So it follows that I somehow have to find ways to give my life meaning, find things I can do despite the problems, challenge myself somehow. At the most basic level I need to try and fill the time when I'm awake in an attempt to take my mind off the pain. Don't forget I am still the same person I was inside, intelligent, driven with ridiculously high standards and can still beat myself up for Britain. 

It is the old me that has meant I've tried new things, refused to just sit and fester. I've always played video games, so every day I play whilst Eric is out walking the dogs. I read and took up knitting a couple of years ago. Knitting has been especially rewarding, I've produced a wide range of things from scarves to cardigans and socks,  all of which I given away to friends or Eric has them. It sounds ridiculous but doing any of these makes my condition worse. I'm restricted to a couple of hours knitting in the evening, any more and I'll be well and truly punished the next day. I can't read for long at the best of times and there are often times when I can't read at all for a day or more. Doing too much for me is a tiny fraction compared to a healthy person.

A friend took me to my first ever speedway meeting not that long after diagnosis. I loved it, the smell, the roar of the bikes, the drama that could unfold over the course of four laps. I didn't miss a home meeting for several seasons but the impact it had on my condition grew progressively more extreme. I remember at the beginning (2006) I could walk extremely slowly with the and of walking sticks to 'our spot' on the home straight. Sitting in the cold wrapped in a sleeping bag didn't do me any good. I was in utter agony but it was worth it. Roll on a year and I was wheelchair bound, Eric having to pull me backwards over the rough ground to get to my viewing position. I was able to have my legs elevated but by the end of the evening I would scream as he helped me transfer from the chair to the car. How Eric got me back into the house and the safety of my chair I really don't know. Trying to stand on either foot was horrifically painful. The slightest movement unbearable and so very hard to make yourself do. I fought on for a few years, by now in an electric wheelchair but eventually I had to concede defeat to CRPS and stopped going. I watch as much speedway as I can on television, even having Polish satellite TV installed. A typical season will see me watch over a hundred meetings from here and around the world. It isn't the same but it's the best I can do.

You see the trouble with my condition is that no matter what you do it pushes back by upping all your symptoms, making doing anything for varying lengths of time impossible. Imagine trying to push a duvet into a bin bag. The harder you push the harder it seems to push back? Even back at the very beginning it would take several days for me to 'recover' from a speedway meeting, I would lose days to sleep and just had to sit it out until pain, swelling etc returned to normal levels. It got to the point that it took me the entire week to recover/prepare for the next meeting. It just became untenable in the end. Watching a couple of meetings one after the other on TV wipes me out such is the hold it has on me now.

Another addition to my small list of hobbies was archery. I actually took it up very early on as I desperately wanted to do some sport and it was something I could do in my wheelchair with my legs up. We couldn't find a disabled friendly archery club back them so I gave up. Came back to it several years later as I found a club that would have me. I got pretty good, all things considered, and put up with the inevitable payback because the pleasure I got made the extra pain etc worth it. Nevertheless I struggled badly, losing the next day or so to sleep. It is so difficult to shoot as I have to, basically sitting on the floor but up in the air thanks to the wheelchair. Able bodied people have it so easy!! CRPS put the ultimate boot in as it moved into both upper arms not too long after I'd started shooting again. I think I only managed one season where I shot longer distances well over at the club’s field. The range of movement in my shoulders and arms worsened because I couldn't push through the pain, making shooting harder than ever. I couldn’t lift my left arm high enough to aim at longer distance targets. I have the lightest possible bow setup but even that hasn't helped. It's been years since I shot anywhere other than down the garden and even that is a real struggle. It is so difficult and painful to get into a decent shooting position. I feel as if I'm tying myself in knots yet it still feels wrong. Most sessions are little more than physiotherapy, I'm too stiff on both sides to shoot properly. I shoot a few ends, trying to loosen things up, fighting the pain. It's difficult to explain. I guess the best analogy I can come up with is that my arms feel like pieces of wood, totally inflexible and impossible to do anything with. I do still shoot, albeit irregularly, and do my best. Some days I do quite well but compared to what I could do it's a load of rubbish really. Despite the intense feelings of frustration and sheer irritation that I can't get my body to do what I want it to, I do still enjoy archery when I can and won't let CRPS take it away from me completely.

Last but not least, the latest addition to ‘what I do’. I've been toying with the idea of learning to play a woodwind instrument for a long time. I didn't know if it was feasible because of my situation or whether I'd even be able to get a note out. Earlier this year I got in touch with a music teacher who was recommended to me. He had clearly thought about my situation as he suggested a Clarineo, which is a C clarinet made of plastic. Smaller and considerably lighter than 'normal' clarinets I could hold it easily in my chair with my legs up. Plus I could get a sound out of it. Perfect! Actually the Clarineo was quickly replaced by a 'proper' C clarinet. It’s still smaller and lighter than it’s big brothers so it’s ideal for me. Turns out I'm not bad and making speedy progress. Bearing in mind I gave up music at the end of 2nd year at school I'm gobsmacked that I'm doing so well. Paul is absolutely fantastic, his enthusiasm and knowledge have opened my eyes to a whole new world and frankly I can't get enough of it. Inspired, I’ve thrown myself into it, practicing twice a day and I’d  do more if my body would let me. It takes a big toll on me like anything else. Pacing is vital, for example, only reading for a short time during the day, recording live speedway meetings on Sunday instead of watching two on the trot as I used to. I used to carry on playing my video game a little after Eric and the dogs came back from their walk but I can’t now. Even so, as the day goes on I feel rougher and rougher and have to nap at some point in the afternoon before my second clarinet session. I simply wouldn’t be up to it otherwise. Over the course of a week I feel more and more shattered and eventually can’t do anything except the clarinet. If you enjoy doing something as much as I enjoy the challenge and sheer pleasure of bringing a load of notes on a piece of sheet music to life, you do whatever’s necessary. Just as well I’m a stubborn so and so eh? 

My condition does cause me problems as it seems to with everything. My posture isn’t perfect, my arms are too low so the clarinet isn’t at the best angle. I’m trying to lift and keep them higher using bean bags under my arms, but I’m struggling with pain in my right arm and shoulder especially. I can’t use my diaphragm properly either because of how I sit to play. Regardless I’m coping so far with whatever Paul throws at me so happy days. To be honest I can’t imagine a day which doesn’t involve my clarinet. Long may that continue.  

Wow, now I remember why I haven’t written a blog post since last year. It takes oodles of sessions and is exhausting! So, what is the point I’m trying to make in this post? Well, the main thing is that no matter how bad your condition is, how decimating it’s effect on your body and quality of life, there will be something out there that you can have a go at and get pleasure from. You just have to find it, and it may be something you’d never have even thought of before you became disabled. You can improve your quality of life. It doesn’t matter what hurdles stand in your way there will be a hobby you can  take up that is fulfilling and enriching. Not just things to pass the time. No. I mean activities that are an ongoing challenge. Yes it can be incredibly frustrating when your body or condition (for me, CRPS) seems to do everything it can to stop you doing an activity at all or at the least make it really difficult. But you have to keep trying. If something becomes untenable, like going to speedway did find another way of doing it. Or try something new, like me taking up the clarinet. Having a chronic and debilitating condition absolutely sucks but finding ways to enjoy life is the ultimate way of sticking two fingers up at it.

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...

    

Dear Bella

I don't know if this will help but here goes....

I wish you were still here with me my darling, I always dreaded losing you, but never in a million years did I think it would be this hard. There is a huge void in my life where you should be, but of course you're not. I have to bite my tongue every time Master brings the others in from their walk. I want to shout 'Bellaaaa', and you'd be there on the arm of my chair waiting for your treat. But I can't.

The reminders that you're not there are everywhere. All the time. Never ending. I give Izzy the last dregs of my cornflakes and she gets to lick my plate in the evening. It's not the same, those last morsels of whatever I was eating were yours. A simple act that signified our bond. I don't save that last bit of my tea in the morning, no-one else wants it. You always did. I'd have to blow on it for you while you waited patiently. I miss that.

The worst thing,the thing I hate most? My empty lap! Izzy and Kai come and visit. Even Kayla now gets the cuddle you'd never have allowed over the divide between the sofa and my chair. I can see you now, teeth bared, looking as fierce as possible, trying to stop her.  Most of the time now I sit here alone. It's the fact that you're not there that hurts most my love. Sometimes I didn't even notice you arrive. It was just right. Now it is so very very wrong. Well I ever get used to it? I don't see how that's for sure.

Your life revolved about me. I was your chosen human,and you looked after me in so many ways, some I'm only just realising. It just makes it harder to live without you. I went in the garden for a while a few weeks ago. I expected to see you at the back door looking miserable as you always did when I did something you figured was wrong. You wouldn't come out, unless I called you. Instead you'd go for a while then come back and stand at the door again. I remember saying to Eric you'd be cross with me. Archery was another thing. You couldn't wait to come and love me when Master opened the door. Up you'd jump, give me a kiss. You weren't happy till I was back in my chair, you on my lap, loving me. That tail would be wagging like mad. I think you were at your happiest when we were together. I know that I was. 

The others struggled without you for weeks. You and Kayla might have been like two grumpy old women with handbags at ten paces when you were here. She didn't know what to do with herself without you. Who'd have thought it eh? Izzy was so sad, had no interest in life, lying around with her eyes staring off into space. Never has a loss of one of our dogs had such an effect on those left behind. 

No other dog has or could ever come close to you my love. You were unique, a one off. I was lucky enough to share twelve and a half wonderful years with you. How I wish it could have been more...

Love always,

Mistress

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!