Thursday, 2 February 2017

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...

Thursday, 29 September 2016

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,

Saturday, 13 August 2016

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.....  

Thursday, 23 June 2016

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.

Thursday, 17 March 2016

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.

Thursday, 26 November 2015

Archery, CRPS and me...

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

Archery today - shot Portsmouth, scoring 528
“Focus on what you’re doing not the target” or “don’t think, just shoot” are definitely the mantras I need to focus on I think if I am going to shoot at my best all the time. There is absolutely no reason why every arrow shouldn’t score nine or ten. I have the technique, it’s my head that’s letting me down. A 2 for pity’s sake, where on earth did that come from? 

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

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

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

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

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

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

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

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

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

Thursday, 15 October 2015

Officially broken but new medication to try!!

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

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

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

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

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

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

Summing up - As the saying goes ‘With pleasure comes pain’ 
Things are far worse than I thought. I can develop all the joyous symptoms of CRPS anywhere, my nerves can and will act oddly, too sensitively or just fire for the fun of it. Basically my nervous system can do what the h**l it wants. That’s definitely pain whichever way you look at it. 
BUT, for the first time in a very long time we are trying something different which may improve the pain control. It might be marginal and it will take a long time to make the change to minimise withdrawal and side effects. At the end I may be no better off, but we have to try. You never know there might be some pleasure in the form of less pain.......