The operation.

The recent week and a half must be right up there as the most difficult, traumatic and stressful I've ever had. I've given this post the title 'The operation' because that's what it's been on so many levels. As many who follow me on FB and Twitter know Eric had a make or break (no pun intended) operation on his arm on Thursday 5th September. l so dearly hope that the bone heals some 4 years after he first broke it. It has to.... surely?

Before I go further its pertinent to point out that in the last 24 and a half years of marriage Eric and I have spent no more than 4 or 5 nights apart. We are more than close, we are soul mates, able to finish off each others sentences and know what the other means without explaining. Eric forms the centre of my universe, is my rock, my best friend, was my lover (something else CRPS took away). I can categorically say, having endured the time he was away that life simply wouldn't be worth living without him. I don't mean to sound melodramatic, but a future without Eric is utterly and terrifyingly bleak. It would be as if someone had turned the lights off with me fumbling around in the dark unable to find the bright star that is my Eric.

I must pay tribute to three wonderful friends without whom Eric couldn't have gone into hospital at all. Firstly Dominic who I met through Twitter a year and a half or more. He also suffers from CRPS but until 5.30am on the morning Eric was due to be admitted we had never met in person. Extraordinary then that he would take us all the way to Stanmore then drive me home and help me back into the house. Where transport (those who should surely have taken him) failed Dom came through where so many wouldn't. Dom, you are wonderful, thank you.

Next comes Jackie, who bore the full brunt of just what it takes to care for me. Including a morning when it got about as bad as it possibly can. Taking time off unpaid to help us, what can I say? She was absolutely fantastic and supported me mentally, just as much as physically. Calm, reassuring and all round bloody brilliant, she kept me sane. We only actually worked together for 3 months before I got CRPS yet here we are all these years later. From the bottom of my heart, thank you.

And finally Sandra, who I met when we worked at the same school a year before I got CRPS and became very good friends. I knew she would be at work but faced with Eric being in hospital a further day, and Jackie unable to stay another day (although she offered) I had no option but ask her to come and look after me. She dropped everything to come over at 6.00am on Monday, having gone into work the previous day to do what she would have done. Again words fail me. Sandra, thank you. And of course I can't forget those on FB, Twitter and especially my wonderful friend Penny who supported me throughout. It is so humbling to know that we have friends who will go above and beyond to help us in times of need. So very lucky indeed.

We knew that Eric was being operated in the morning  of 5/9, so once mid afternoon came I was expecting a call either from Eric himself, or the hospital to say all was well. When it didn't come l started to worry more and more. By the time we got to 6.15pm I was beside myself. A phone call later I was none the wiser as nobody seemed to know where he was. How was that even possible? It took a further two calls and me getting slightly stroppy or hysterical, not sure which, before I found out that he'd been on the operating table some 10 hours and they were still going!! Talk of an HDU bed did for me completely but thankfully a superbly calm and reassuring Anaesthetist talked me through all the possible interventions that may or may not be needed plus what would have been happening in the operating theatre to ensure his blood sugar stayed stable. Calmer I finally got a call with good news some time after 10.30pm. Where normally I sleep at various points during the day, my brain simply wouldn't shut off even when I heard he was ok. In fact I don't think I actually managed to have an afternoon nap until Monday afternoon once we knew he was definitely coming home.

In the end the operation took 12 hours, 10 of which were spent trying to get the pin out! It beggars belief that they could spend so long but the main problem was the fact that the toolkit they sent from Southend to unscrew the original metalwork just didn't work. In the end they were forced to cut the pin in half at the break site and pull it out either end. Even as I write this, knowing that it was a success and his arm will be fine, I feel terribly emotional about what my little man went through. Luckily the first he knew about any of it was when he woke at 5am Friday morning, having lost a complete day!

If ever there was a time I wished I didn't have CRPS it was now. All I wanted to do was get to the hospital and be with him. Instead I was imprisoned in my chair more than ever as my body decided to do it's worst. At 6am I was in a terrible state, sweat literally pouring off me. My eyes felt like someone had stuck pins in them, my head was fit to explode and I felt sick. My plan to go over and see him evaporated. I couldn't move in the chair let alone go the 45 miles to the RNOH. I brought all my tablets back up, and as I explained to Jackie later, that is about as bad as it gets. Bless her for coping. Eric hated being in hospital with a passion as soon as he was properly awake, he just wanted to come home and I just wanted him home. At least we managed to get Chaton messaging working later on Friday so we could be in contact whenever we wanted to. We were so worried about each other and I spent the entire time waiting for the lightsaber noise I had set up to tell me when a message came in. He was the same at the other end.

I finally got over to Stanmore on Saturday. Quite how I got to the car I have no idea especially as I refused to let Jackie support me properly because of her back. Sheer bloody-mindedness I reckon coupled with a refusal to let Eric down by not getting there. Jackie did her best to stop me, but it wasn't going to work. She admitted defeat when, against all odds, I somehow pulled myself into the driver's seat. I can admit now that I was in agony before I even got as far as the front door, and knew it was utter madness. I just had to get there, regardless of what it did to me. It was non-negotiable, simple as that. Oh boy did I pay later but it was worth it to see the smile on his face when we got there. Of course time vanishes when you're visiting and all too soon it was time to come home. We both knew I wouldn't manage another trip. Had he been released on Sunday I would have done though, or Monday when he eventually was released. Thankfully common sense prevailed and they provided transport to bring him home. The ordeal was over and we were all back together. The dogs, Kayla especially, found the experience just as stressful. It is only now, a week later that they are finally relaxing and getting back to their happy selves.

Unless you're disabled it's probably incomprehensible to understand the toll Eric going into hospital has had on me. Both physically and mentally. I never realised just how strong his right arm is or how 'easy' it is to do things because we have found the best technique over the years. He gets the wheelchair in and out of the car with one arm for example, where Jackie and a lovely man who helped, struggled between them. Getting myself out of my reclining chair was utterly horrific where normally it's a 1,2,3, go and I'm up. Effortlessly' Everything was harder, more tiring and of course having to talk everyone through how to do everything in itself was exhausting. Jackie got the hang of 'being Eric' but it must have been an incredibly steep learning curve. The little ones adored her though and even Kayla came round.

One of the worst things was that I couldn't hide how bad I felt, my appalling mobility and everything else CRPS has done to me. When someone comes over I am sitting in my chair, never get up so I'm pretty much the Jane they remember. Jackie especially saw just what life is really like and it isn't pretty. I was dreadfully embarrassed and self conscious. Stupid I know but trying to save my friends' feelings I guess. Of course it also brought home just how disabled I am. A reality check I didn't need. Oh and far far too much time to sit and think about things I shouldn't think about. The realisation that I could have lost him. How much longer would they have continued trying to get the pin out before sacrificing the arm. The future. Scary indeed....

So he we are, present day. As ever Eric and I are working as a team to muddle through life as best we can, helping each other constantly. He must have trudged miles to and from the kitchen carrying one thing at a time. Anything requiring two arms is brought to me and then I do whatever is needed in my chair. Then more trudging taking it all back. Life isn't actually hugely different as he's only had one good arm for the last 4 years anyway. Except he is on a very tight leash so that he doesn't use his left hand. He is doing exceptionally well all things considered, I am so very proud of him. Particular successes are me doing archery, having a bath/washing him, helping feed the dogs. We even cooked a roast on Sunday because Eric really fancied it. How could I say no after days of horrible hospital food?

Without doubt life is going to be tougher than ever in the next three months but we will cope. After all we always have so why should anything be any different now? Together we can do anything....

What's the point?

A very good friend said to me the other day 'Don't you get tired of the constant battling, don't you ever feel like giving up?'. The immediate response to that is of course NO! It got me thinking though. Why do we keep going, despite having a shockingly bad quality of life? My conclusion is that it really Isn't that black and white after all......

Do you reach a point where you've just had enough, can't take any more and want to get off the roundabout of life? Those times when perhaps you're stressed out, work is a nightmare plus you have way too much on your plate with family commitments as well. You're chasing your tail, getting nowhere fast. You may declare yourself depressed. Who am I to knock you or your circumstances? That is neither my place nor intention.

Life for us 'shirkers', or so we're labelled by the Coalition Govt, is easy. We could go to work we just chose not to. They just about manage to hold back from saying disability is a lifestyle choice. That day may yet come, god forbid. The implication is there though in the descriptors that define ' fitness for work'. They serve to define genuinely, chronically and terminally ill people as fit for work. The inhumane work capability assessment reinforce this because it is unfit for purpose. Similarly, disabled people have to be so bad that their quality of life is utterly compromised. I am 'lucky' enough to be one of those whose disability makes any semblance of normal life impossible so I get ESA. There are many who have committed suicide because they were deemed 'fit for work', had their benefits stopped and saw no future. It Is So sad and utterly wrong in a country as 'advanced' as ours.

From personal experience I can honestly say there have been times when I could and indeed have gone as far as to plan my own suicide. That sounds shocking doesn't it? It does to me as I sit here writing this. What could be so bad that you would want to take your own life? Give up the fight. Take the easy way out as some would see it?

To try and explain let me describe what my condition has done to me. You see it isn't just about being ill. A chronic condition such as CRPS does so much more. It stripped me of everything that defined me as me. Well that's how it felt. You see it isn't just the obvious things such as being in constant agonising pain, the disgusting swelling of the affected limbs, the horrendous allodynia meaning the gentlest of airflow induces even more pain. Or that your ability to move is completely compromised.  All of that is bad enough but that is just scratching the surface. It meant I couldn't work, took away my independence. Worst though it took the very sense of who I was and threw it out the window.

That in itself is bad enough. Having to be cared for 24/7 by your husband, the man who was once your lover, still is your best friend, the man you adore and love more than anything else in the world is I think the worst thing about being disabled. He has to do things that nobody else should have to for someone else. Be on call all the time, whenever I want anything. Never able to go out and do anything for any length of time because I may be sitting at home needing a pee or the dogs need to go out. Or something has happened and I can't do anything about it. Even at home his time is not his own. Take archery for example:

If I want to do archery it is a military operation for him. He has to move stuff in the kitchen to open the patio doors fully. Get the wheelchair from the kitchen, put the leg rests on and set it up so it is as close to my chair as possible. Then he has to help me put the bow together, carry it into the kitchen plus other bits and bobs. Get me changed into archery clothing, move the commode and help me up to use it. Put my shoes on, get the fleecy thing organised on the wheelchair. Help me off the commode and into my chair. This is the first time I can do something completely by myself - pootle the short distance into the kitchen. Then more help. Lift the leg rests into position. The quiver lives in the the kitchen hanging off the workbench. He will replace the target face as necessary, pass me my bow, organise the dogs into the living room. Even then his work isn't done. He has to wait for me to shoot each set of 6 arrows then trudge down the garden to collect and call out the scores. He can't do anything else really so sits on a stool in the kitchen reading a book. And then of course he must do everything in reverse when I've finished.

I hate sitting in my chair watching him get things ready. It is both incredibly frustrating and depressing in equal measure. I hate being such a burden on him. I would give anything to be able to do everything myself. Obviously it would be even better if I was able bodied full stop!! This is especially true when you consider Eric goes into hospital to have the arm he broke in 2009 operated on again to hopefully get it to heal properly. Yes he has spent the last four years looking after me with a broken arm! He just gets on with it. I should be looking after him, yet instead he is worrying about who will look after me!  I should be spending the next three months doing everything. Making life as easy as possible for him so he doesn't use the arm at all. But life for us isn't like that. We will muddle along together. There is nobody to help us. As always. l simply can't put into words how useless and inadequate I feel that I can do so little to help.

At the start I posed the question 'Don't you get tired of the constant battling, don't you ever feel like giving up?'. Forget about my battle to try and forge some sort of quality of life for myself. Doing what I can despite what CRPS throws at me before, during and after. When you have a husband who does so much, without complaint and always puts me first despite my protests how could I possibly stop fighting? l can't give up, that would be unforgiveable....

Eric's hospital appointment and it's implications....

Feeling lousy but have to put an update on here.... thanks for all the lovely messages on FB, mean an awful lot :-)

Massive implications as a result of Eric's hospital appointment.

The Consultant he saw was absolutely excellent. She proposed (and Eric is going for it) to open up the arm from shoulder to elbow, remove the pin, shorten his arm slightly by removing the end of each broken bit of bone to give nice fresh ends. Then she will take a bone graft from his pelvis, together with as much donated bone as she can. Get the ends of the bone absolutely lined up, pack all the bone bits in and screw and plate it all in position.

Big operation, but he is too young for the prosthesis option and she believes that she can get it to heal. She is basically going to set up the broken bones in the best possible way, doing everything available to give it the optimum healing environment. He has none of the indicators which would suggest the bone won't heal apart from his diabetes so she is confident this will work.  He will also have the arm put in plaster so that the straight position is maintained. We're looking at him spending a couple of nights in hospital after the operation unless he bounces back in which case he could come home the next day. He did the last time so fingers crossed but this is a much larger operation. She is superb, we have the utmost confidence in her. If she reckons she can get it to heal then we have to go for it.

She is very worried about the fact that the pin is basically rattling around inside his arm, and it is likely to break very soon. So until the operation he is not allowed to use the arm apart from when he has to help me. She made it patently clear that if he carries on using it, it will break again and that will make her job so much harder.

Her normal waiting time is 12-14 weeks (yes, really that short!!) but she wants to get him in as soon as possible. We're looking at September as she is fully booked in August. I'm sure she'd have got him in sooner if she weren't already booked solid.

And here's the real headache. He will not be able to do anything with the arm for 3 months after the operation. That is absolutely nothing, not even to help me. She's acutely aware of the situation and has already said that their Occupational Therapists and Social Services will get involved. She also wants us to speak to our GP and try to get help organised at this end. Our GP is useless, and we've had no support from Social Services before now other than to pay for some cleaning so it looks bleak at this end. Realistically we are going to have to get on with it ourselves. Eric is my full time carer, helping me 24/7, although I desperately try to keep asking him to do things. How is that going to work when he can't do things, and I won't be letting him that's for sure! Carers can't be here all the time can they?

I feel utterly impotent. I should be able to take over doing everything, meaning he can just sit and rest the arm, up till he has the operation and the 3 months or more afterwards. It is at times like this that I detest CRPS, being disabled more than ever. Eric has enough on his plate having the operation, without worrying about who is looking after me whilst he's in hospital. Who will take him there and pick him up? I can't which infuriates me even more!!

We've already thought about lots of ways we can try and get through. I have been looking online and have found a riser recliner that looks really comfortable. That will save him having to pull me out of my chair. Won't make me independent as my balance is awful. At least it will mean it is just a case of shuffling along with me the few feet to the commode for example. Going to get another electric wheelchair so we have one in the house and the car so he doesn't have to get it in and out. Obviously we won't go out unless absolutely necessary. Thank goodness we have some savings!!

So there we are. Eric has a fantastic chance to regain full use of the arm. Life will be difficult in the extreme when he goes in to have it and of course during those critical 3 months and beyond. I have absolutely no idea how we will cope, especially as I only have one decent arm to use. We'll muddle through somehow. We have to.....

Peering into the abyss...

Our worst fears have been realised.... it is CRPS causing the ongoing problems with my arm.

The most recent photo of my arm

I went to see the Physio again on Monday, armed with my pain diary and several photos we had taken during the time since the massive flare caused by the exercises/massage and the appointment.

The photos had been a huge shock to me, because I can't actually see the side of my arm, so had no idea just how bad it was. The symptoms of CRPS were clear to see. Swelling, colour and temperature changes plus a shiny sheen to the skin. Add this to the throbbing pains despite 50mg of morphine flowing round my body 24/7 and it was pretty damning. The Physio confirmed it, saying there was no way the symptoms could be explained by an injury. Especially as this has been going on since March if not earlier. Where we thought he'd found something wrong, the reaction to the treatment was over the top in the extreme.

He is going to write to my Pain Consultant urgently to refer me and hopefully they will get me in quickly. Not holding my breath though after being told I'd have to be referred as a new patient when I contacted the Pain Clinic direct (see previous blog post). I can only hope that I bypass the new patient pre-assessment for which there is a huge waiting time by virtue of the fact that the Physio has already examined, tried to treat and diagnosed CRPS in my arm. I do have the certainty of seeing my Pain Consultant in September/October as I see him every six months. Even this means yet more waiting, time which I can little afford to lose. If you stand any chance of getting CRPS into remission it needs aggressive treatment within the first three months of it starting. Anything after that and you are starting to fight a losing battle. Which is why my legs are as bad as they are. I was nearly six months before we got a diagnosis and it had already moved into the other leg and up to the knees in both.

Of course the difference this time around is that I know my enemy intimately. I am already taking appropriate medication for CRPS because of my legs. OK, they don't do a lot but any help is better than nothing. The critical thing in fighting CRPS though, is to keep the mobility, the range of movement and the use of the affected area. So much of the time before my legs were diagnosed was wasted, I was told to rest as they didn't know what was going on. Totally the wrong thing to do, as I now know to my cost. Every moment of rest let CRPS get a little worse, increasing the pain which in turn made it ever harder to do anything with my legs. I can't push through the pain at all, it is just too bad. Being realistic, the CRPS was so aggressive in my legs I doubt we could have kept it at bay, restricted it to one leg or stopped it moving upwards. But there would have been a chance, however small.

Which brings me back to my arm. Ever since the x-rays came back clear in late April/early May I worked really hard and got back the full range of movement in the shoulder and upper arm. Purely and simply by doing things with the arm regardless of how much it hurt. Pushing through the pain, refusing to let it stop me. Of course the pain never went away, it was and is always there in varying degrees but when I first saw the Physio he was extremely impressed with the 'superb range of movement' I had.

With the benefit of hindsight, trying to treat a problem with the deltoid tendon was the worse possible thing we could have done. After a few days I couldn't do anything at all with the arm, it was horrendous. It felt like I'd lost all the strength. I couldn't stretch it out sideways, forwards, lift it up or anything. The pain was completely off the scale, Oramorph didn't help, I could do absolutely nothing for myself. It was like a massive CRPS flare, which, looking back, is of course what it was. The exercises were stopped and I was told to completely rest it. No archery, no moving the arm above shoulder level. For the next day I could do nothing else but rest it and it settled a little. Me being me, over the next couple of days I had to gently try and move it a little bit. And then a bit more. I started to get the strength back (which of course I'd never lost, I just couldn't use it because it hurt too much), could lift my iPad up for example which is on the table next to me and it was a bit better when Eric helped me out of my chair (I push up whilst he pulls).

Of course I had to do some archery, if only to see whether I could still do it. So a week after stopping the exercises I shot two dozen arrows. Completely pain free! It was a wonderful feeling and seemed to improve the arm if anything. Meanwhile resting it just increased the swelling, the colouring and of course the pain in the arm. Should I do as the Physio advised and continue to rest it completely or do what I felt I should do, namely keep it moving? Of course I did what felt best and so worked on pushing through the pain as I had before. Which is where I am now as I write this. The arm still constantly throbs, becomes worse when it's moved and recently hurts more when exposed to airflow (not very helpful when you have a fan on because it's so hot).

The reality of having CRPS in a third limb has sunk in a bit and I'd be lying if I said I didn't feel a bit fearful of what the future will bring. What if it continues to get worse or moves down the arm? Moves to the other arm? Life is of course going to be harder because I can't support myself as I could, I am ever more dependent on Eric. I am more restricted in what I can do, for example gardening. I used to do loads of stuff in the raised beds, will I still be able to carry on doing that? I worry even more about my weight because I am less active than I was and can't see a way of doing anything about it. Using the Wii to play tennis is out, too much for the arm. I can't believe my luck that archery seems to be the perfect activity but how long will that last? Will archery become impossible at some point? When I eventually get to the pain clinic will they be able to do anything with the arm (nerve blocks etc) bearing in mind everything failed miserably on my legs?

I could go on, but what's the point? It doesn't make my situation any different, so it's a waste of energy. The future will bring what it will. No, I have to concentrate on what I can do now, the positives. Continue to push through the pain, fight to keep the function I have in the arm, the range of movement. It will no doubt flare just like my legs do, but since when has that ever stopped me?  I will do everything I possibly can to keep the CRPS at bay. Continuing archery is a given. Of course!
Come on CRPS, do your damnedest!!!

You cannot be serious!!!

So angry, so frustrated, so dejected. Those are a few of the emotions I'm feeling right now.

I had emailed the Pain Clinic again after their less than helpful response on Monday. They phoned me again. It is with disbelief that I heard her say that my arm is a new condition so they cannot get involved. Indeed, 'they would be doing me a disservice if they gave advice about my arm'. So if I want the Pain Clinic to provide advice etc I have to go to my GP and ask for a NEW referral to the Pain Clinic. She even said 'IF your GP thinks it's appropriate'. The final body blow is that I would have the many months wait (as a new patient don't forget) to even get to the pre-assessment clinic. I enquired what happens then. 'Oh, then Dr Naylor would take over the care of your legs and the arm together'. What the f**k? Sorry I never swear but REALLY?

I queried the fact that surely as CRPS was suspected (as the Physio does) then it would be a good idea to treat it early? Surely the level of morphine (50mg) plus Oramorph (+10mg as needed) I take isn't normal for a sports injury? Plus it is of course the same condition, CRPS. Apparently not. To all three...

Physio rang as promised. I talked through how the arm has improved. He was pleased that I was in less pain and has told me to rest it completely until I see him on 15/7. This includes no archery and I am not allowed to raise the arm above shoulder height. How on earth is that supposed to work when I rely on my arms to support me? Or to hold onto Eric to pull me out of the car etc? No stairs, not bath (if I could get there)....an even poorer quality of life than ever. 

I feel stuck between a rock and a hard place. A further two weeks to wait to go back to the Physio. See what he says, and try more exercises presumably that may or may not cause a flare. It is obvious that intervention causes a drastic decline in mobility and exponential increase in pain. When/if can I say no at some point?

Obviously I'd much prefer it to get better, but I've had CRPS long enough to know the signs. Anyway having exhausted the Physio I land back at the GP with a what do we do now? Perhaps a god knows how long wait to have an MRI scan? And finally, after everything has been exhausted we come to last in the list, being referred to the Pain Clinic. As a new patient of course.

I frankly don't care about the pain as long as I can continue to do archery. I live with pain, more doesn't really make much difference to be honest. The exercises really screwed up my arm although it is improving well and I am deeply concerned that as time goes on the chances of me being able to continue with archery become slimmer. It terrifies me in fact. Anybody who treats CRPS will know you have to treat it really aggressively in the first three months. I have been pushing through the pain, improving the range of movement myself (which the Physio himself said was superb) . It's been working and now I've 

been pushed backwards. 

Do I rest it completely? Do I keep it moving? If I don't it worsens, and it will be harder to get that back. Eric has already pointed out that archery doesn't involve raising my arm above my shoulder, bless him.

I suspect that I will do archery at some point, if only to reassure myself that I still can. It always loosens e ery thing up anyway. The fight in me tells me to do it my way. 

What's that saying? Something along the lines of, if adapted to fit the situation, 'to beat CRPS, you must become CRPS'. I already have it, who better to keep it at bay, or at least in it's place!! Ah, not all negative then.....

Please let there be something wrong!!

This coming Tuesday (25/6/13) is rapidly becoming judgement day. That's how it feels anyway. My right arm has been causing me 'grief'' since March or even earlier. I have mentioned it before in my blogs and on Facebook. Was it archery that caused the problem? Probably, even though bizarrely, actually doing archery never hurts in the slightest. It started with pain in the top of my shoulder and upper arm when I moved it, and led on to reduced movement in my both my shoulder and upper arm. The back of my arm above the elbow was also painful to touch or lean on. It wasn't unbearable pain, but it would 'catch' when I moved it, especially if trying to pick something up from the table next to my chair. There were brief periods when even the slightest movement of the arm was impossible because it was so painful. These were short lived and seemed to right themselves so we wondered whether a trapped nerve was the problem. On the whole though the morphine I take masked the pain reasonably well. That said it was baffling how my arm could be so painful when I constantly have 50-60mg of Morphine onboard constantly, anti-inflammatories and everything else I take for CRPS. What on earth was going on?

Of course life became much harder. I found it really hard to press down or pull with that arm. A problem when you need your arms to support you at all times. Getting up the stairs which is completely reliant on my arms pulling me became nigh on impossible. Essentially anything that needed me to push or pull with my right arm became much harder and hurt in varying degrees. Supporting myself was restricted to my left arm, my mobility compromised even more. Eric has been amazing as always, providing even more help than ever, doing even more for me.

We were starting to worry that there was something seriously wrong with the arm. Stress fracture? Frozen shoulder? I went to see my GP, who decided to send me for x-rays. Two weeks later (yes really!!!) the appointment to have the x-rays arrived, and seven separate x-rays later we headed home. When the results came back there was  nothing wrong so my GP said he would arrange for physiotherapy. The 'you can now phone us for an appointment' letter took weeks to come and the first appointment they had was over a month away. Utterly useless but what could I do? Forced to wait I had to get on with having one decent limb. I started to use the arm a bit more despite the pain, safe in the knowledge that there wasn't anything seriously wrong. 

Archery actually seemed to loosen everything up a bit so I have continued shooting throughout. Unfortunately my draw began to get worse and worse. I couldn't get myself into a good position, properly lined up etc so my accuracy and consistency plummeted. Sometimes I couldn't even get the arrow on the target let alone in the gold!! Not good at all. I simply couldn't cope with the bow as it was, my injured arm was clearly struggling with the weight of it or the poundage I was pulling. So I took action. Out went the twin rods and v bar on my bow, together with the 28lb limbs. The latter were replaced by 26lb limbs and I now have a very short long rod (just 19" compared to 28" I was using) courtesy of Iris and Tom.

Two 10s and a 9 - I can still do it!

The bow immediately became so much easier to deal with, I could now get myself into a better position but my accuracy only improved slightly and then went downhill again. I was missing the target again. I had obviously been compensating for the limited movement/strength in my right arm because everything was going miles left. My wonderful coaches Tom and Iris diagnosed the problem within the space of 4-5 arrows (my left shoulder was too high). I've worked on finding a method to keep the left shoulder down with the longer term aim being that I can shoot completely free of pain regardless of how many arrows I shoot and with further stabilisation on the bow. It seems to be working well judging by these arrows that I shot earlier today....

So where does Judgement Day come in?
Well, in the last couple of weeks, my upper arm (below the shoulder) has started to throb with pain, gradually getting worse and worse. Doesn't matter if I move it or keep it absolutely still the throbbing continues. It is very swollen, and the skin has taken on a purple, mottled appearance. It is often colder than the other arm and moving it is impossible due to the pain on occasions. Added to the never-ending pain and the other nonsense in my legs I have been sweating uncontrollably, been constantly exhausted and incapable of doing anything. I have had to take Oramorph as much for the arm as my legs which together with all the other symptoms is extremely worrying.
Why? Because those are some of the things that happen in my legs. Which means there is a realistic chance that although the injury has healed (I now have full range of movement again), CRPS has moved or at the very least developed in my arm. This has enormous implications that I really don't want to consider too much right now. Needless to say the thought of being as I am now (with only one decent limb) permanently is pretty grim. I will carry on fighting as always but the battle would be all the harder.

So, strange as it seems we really want the Physiotherapist to find something wrong with my arm on Tuesday. Because if he does this means it can't be CRPS. We can get it better and then it is just my CRPS riddled legs to contend with. Life can get back to normal. Well as normal as it gets for me anyway......

The threat of losing something

You don't realise how important something is until it is nearly taken away from you. Similarly it is hard to understand how something that was so integral to your well being has suddenly become less important to the point that you could see yourself not doing it again and not being bothered about that. I am of course talking about archery and going to speedway. The former I found again last August/September after a break of 6 years (and had only taken it up after I got CRPS in 2005). It has been well documented in my blog posts about speedway being my 'line in the sand', my ultimate sticking two fingers up at CRPS. I will go whatever you do to me during and after. So bring it on! Equally I've written about the pleasure archery gives me, the challenge, the doing rather than watching. Being coached by the wonderful Tom and Iris, who are the nicest people you could hope to meet and have been so supportive and taught me so much. Archery became a new 'line in the sand' to join speedway.

So what's changed?

Well, let me take archery first. Saturday was a huge day for me. Since early March, if not earlier I have been having trouble with my right shoulder and arm. At it's worst I couldn't move the arm at all, the pain was so utterly excrutiating. My range of movement has been restricted and putting any weight on it causes varying amounts of pain depending on whether I've rested it or not. This despite the fact that amongst other things there are 50-60mg of Morphine flowing round my system constantly. I couldn't pull my bow, couldn't cope with the weight of it, so I was forced to revert backwards, replacing the 28lb limbs I've been using since October to my old 24lb ones and removed all stabilisation apart from the long rod. This made life much easier initially, but I was soon overdrawing and still couldn't get myself in a good shooting position because of the stiffness and lack of full movement. Perhaps bizarrely shooting doesn't actually hurt so I have been able to carry on. Albeit getting gradually worse and worse. I've had x-rays which prove there no stress fractures or other orthopaedic issues. My GP has organised Physiotherapy which unbelievably isn't going to start until June 25th. My archery 'form' had deteriorated to the point where I had no idea what I was doing, arrows were missing the target, not a single onegetting near the gold. That is not enjoyable. It's not only frustrating it brings me down mentally.  I have had such incredible feelings of anger inside which I couldn't explain. 

Spare a thought for what life is like for me at the moment, being reduced to one good limb. With a duff arm, getting about is harder, I can't do any exercise on the Wii because it hurts and I get a bad reaction afterwards. So I worry even more than normal about my weight. I am even more a prisoner to CRPS than ever. My legs are consistently worse than normal because I cannot support myself to the same extent. They have been flaring badly. Sitting watching TV, reading, doing sudoku puzzles, playing a video game whilst Eric walks the dogs isn't exactly fulfilling at the best of times. Going out is a boost but is harder, so I've been even more housebound than ever. I have been watching loads of speedway from Poland, Sweden, Denmark and even Russia at any and every opportunity as always. No change there. However actually doing something physical, be it waving my arms around as I box, play table tennis or whatever on the Wii adds colour to my (drab gray) quality of life. Both mentally and physically. Archery (which would have to be a fluorescent yellow) has added so much joy and excitement to my life. It's something I can do whenever (depending on how my legs are), having a target down the garden or go over to the club's field to shoot longer distances. Archery gives me such a buzz, it's a challenge, fulfilling, good exercise and something you can never say you've mastered. No sooner have I finished shooting than I'm itching to shoot again. I can't get enough of it.

I hadn't realised how down I've become about my archery becoming such a disaster, with the realisation that there was a very real chance that I may have to give it up because physically my arm simply can't cope. Less than a year since I found it again. I stuck the 28lb limbs on eBay as I won't ever be able to pull them again, and ordered a set of 26lb ones which I hoped would allow me to draw comfortably, and get into the correct position to score well. The 24lb weren't ever going to be a long term solution so it felt make or break. Would I be able to shoot? Get into a good position? Cope with the poundage? Shoot with any degree of accuracy? To say I was nervous was an understatement. I was terrified. It was Eric who suggested I do archery on the Saturday which in itself is unusual. Eric was obviously nervous as well, he knows how much archery means, how vital it is for me. How much of a kick I get out of shooting 9s and 10s. If this session was as disastrous as the last, where would I go from there? 

It all sounds terribly dramatic, but you have to realise that for someone who can do so little for themselves finding something so fulfilling is like finding the Holy Grail. The thought of having that taken away is almost unbearable. Not so it seems with speedway. This season I have only been to one meeting out of the 5 or 6 there have been. Not so long ago I would have been to every one no matter how cold it was, how I felt before I went, what it did to me during the meeting and of course in the days that followed. I prided myself on mot missing meetings. I would spend days resting up before each meeting and sit out the payback days that followed. Now I can honestly say I'm not fussed if I go or not.  I follow the updates at home, and don't get that 'I wish I was there' feeling. My love of speedway remains as strong as ever. As I said I watch any live streamed or televised speedway I can. Love it. But I am completely non-plused by going to see the Lkaeside Hammers live. I was hoping that by writing this I might get my mojo back, but those feelings are simply not there any longer. 

Could it be that the 'doing' involved in archery makes it more fun, fulfilling and enjoyable than sitting in the freezing cold just watching speedway. Could it be that simple? On reflection I think it probably is. The racing over at Arena hasn't been terribly exciting in recent times. There isn't a lot of passing and the meetings tend to drag on for no particular reason. I was quite excited by the team that was announced but subsequent events which I won't go into have dented that enthusiasm. Perhaps watching the accident that subsequently killed Lee Richardson as it happened via streaming from Poland has contributed in some way? It certainly hasn't felt the same going there since. There are also so few meetings in a season now, which are spread out horribly, going for several weeks without a meeting, then three successive Fridays. I love being the European arm of @lakesidelive (the unofficial but endorsed live update service). Nothing else has changed, it's just the Hammers and going to their meetings. I could quite happily not go again, but we are going to the next one in early June to see if the sparkle, the buzz returns. I suspect that subconsciously at least I have come to realise that it simply isn't worth everything I go though to go anymore. Jury is most definitely out that's for sure. Something so vital has become an also ran. Who'd have thought it?

So, back to yesterday. My archery session....

After the first few tentative arrows, I got into a good rhythm and compared to recently had a really good session. I was able to get myself into a much better position immediately, wasn't overdrawing and I was getting arrows in the yellow part of the target again!!  Okay, there were still arrows that were terrible, but overall it was so much better. I was and remain ecstatic. I can still do it, with these limbs I can shoot comfortably and it will only get better as my shoulder/arm improve. I'm not going to lose archery! Gone is the anger, that down feeling that has been lingering for weeks. Can't wait to shoot again but CRPS has punished my severely. Party pooper!

Who knows, perhaps when I go to speedway next I'll feel the buzz again, catch the bug and get back to never wanting to miss a meeting. Doesn't really matter to be honest. I have my archery and that's what really matters to me. Here's to years of happy shooting to come....