Pondering life...

Seriously life is a bitch and no mistake. These last few days I've been forced to sit here covered with a duvet for my legs (as I have for the last 8 years) and the now ever-present fleecy blanket for my arms. Oh and there's also the issue of the fingers on my right hand which are increasingly hard to clench or stretch without excruciating pain. I sit in my chair wrapped up, completely unable to do anything. Not read, use my tablet or do anything I used to regularly each day. Is this a sign that my arms are getting worse, or as I'm hoping just a temporary flare?

Inevitably I've pondered what my life is going to be like in the future. The not so very distant future the way things are going. If my arms and fingers become as entrenched with CRPS as my legs are life will be very grim indeed. You just can't get away from it really. At least when it was just my legs affected I could sit here and do things.

Take a moment and imagine having constant, nasty, vicious pain in every limb that's always there. You have to mentally steel yourself against it when you want to do anything no matter how small. Typing this for example: my left arm and shoulder are hurting more, I am restricted in my typing because I can't put my right hand fingers on the iPad screen. My right arm is also aching more because it's uncovered. I can feel the arm chilling as I type more...

The thought of being stuck in a body that is constantly ravaged with pain which becomes worse should I dare try to do anything.....a level of pain you can't live without being able to distract yourself... well I needn't say anymore really need I?

It's not even that I'm feeling down at all, I'm not. I'm just vocalising the reality of my situation. It isn't ever going to get better, it can only get worse, with me fighting like hell to tread water and maintain some semblance of 'a quality of life'. However there is no cure, and CRPS is always more troublesome during the colder months. Just to make things a tad harder.

I am definitely going to 'do' archery tomorrow, but I'm really not sure whether my fingers will be able to hold the string or give way releasing the arrow before I'm ready. I've not managed to get anywhere near my PB for a while. Not even shoot a full round even. Is this another sign that things are getting worse? 

One thing's for sure....it won't be for want of trying!

When two became four....

My date with destiny came along last week. I had an appointment at the Pain Clinic on Tuesday 15th October to see my Consultant. The first appointment I've had with him since the long term problems with my right arm and shoulder began in March and more recently started in my left arm. We've suspected that it's CRPS at the root of it all but needed to have it confirmed or preferably ruled out.

I talked him through what's happened since I started getting shoulder pain when doing archery. On a practical level we've made major changes to my bow so that I now have probably the lightest setup it's possible to shoot with. The lightest riser on the market weighing just 530g, lighter carbon limbs, the sight and a 19" long rod. Any club archer will tell you this is a minimalistic setup. I could (and did) have a v-bar and twin rods as well as a much longer long rod. The poundage (how hard a bow is to pull) has also been reduced some 4 pounds. We've basically made absolutely sure that archery won't cause further injury. Giving it up simply isn't an option.

The shoulder injury healed but I was still getting problems typical of CRPS in my upper arm. Weight bearing was painful, moving the arm was painful. Don't forget I already take seriously heavy duty pain relief for my legs so an injury just shouldn't be causing such trouble some 3-4 months later. We were definitely in the realms of CRPS being the cause. The old enemy. My nemesis.

X-rays ruled out the possibility of stress fractures or frozen shoulder or anything else orthopaedic. It had taken about a month to get an appointment for the x-rays and results during which time I didn't use the arm much but carried on shooting as it didn't hurt. About the only thing that didn't! The range of movement decreased so as soon as I knew nothing was broken I took it upon myself to aggressively move and use the arm regardless of the pain, stiffness and difficult in moving it. I continued to push through the pain and got back a really good range of movement. l still had stabbing pains, all the other symptoms of CRPS. Mottling, freezing cold, boiling hot, on fire. Basically all the stuff my legs do. I was getting on top of it though and archery seemed the perfect 'weapon' to fight it.

The GP referred me for physio in July. This was an unmitigated disaster. We were initially really excited because, having examined me, he found a spot that was painful. Something might be wrong, it might NOT be CRPS!!! He gave me exercises and told me to massage the area several times a day. This caused a massive flare which left me unable to move the arm at all for several days. We contacted him and I was told to rest it completely. This just seemed to make it worse so it was a case of 'kill or cure' and I did archery. I had been told not to, but hey, it's my body, my pain and I suspected it would really help. Of course the archery improved things considerably. I went back and the Physio immediately decided to refer me to the Pain clinic because injury simply couldn't explain what was happening. More waiting during which time I continued the aggressive approach including as much archery as I could manage to keep the arms with the best range of movement that I could.

History repeated itself and during the time I was waiting to see the Pain Consultant the problems I was having with my right arm jumped to the left. He had a look at the X-rays from back in May(?) and they are all absolutely fine. No sign of anything like arthritis etc. He is going to send me to an orthopaedic surgeon 'because we should really, just to rule it out'. However it is CRPS in both arms. He said that I'm already doing all the right things. Pushing through the pain and keeping it moving to maintain mobility. I'm already on the medication I should be for treating CRPS so all I can do is just keep doing what I'm doing.

So where does this leave me? Well the first issue of course is that the limbs I rely on to support myself are now affected as well. There are huge long term implications for me. Should my arms ever get as bad as my legs then it's game over. That's scary. I don't mind admitting it. My quality of life is already absolutely rubbish with me essentially housebound, trapped in my chair in the living room 24/7. Without my arms I really would just be a useless lump in the chair. Just what could I do?

There are two huge stokes of luck that are in my favour. Firstly I already have CRPS. So I recognised the signs and was aggressively proactive. Refusing to stop using my arm despite the pain and repercussions. I have gone from waking up in the morning barely able to move my arm, (then arms) to where I am now. I now wakeup with pain, and stiffness but I am able to push through it and get back to full range of movement. Or as best I can! I can't do anything about the swelling, the 'shall I freeze today ' or 'roast today' that is CRPS's whim. Well I can keep a fleecy blanket close to hand and cover them as and when it's necessary. Not to the extent that I have to keep my legs covered constantly but it's using everything we've learned along the way and adapting it for the arms.

Secondly and this reaIly is astonishing, Archery. It seems to be the only activity that helps. Indeed when I shoot all the pain falls away. To the CRPS sufferer this is total and utter bliss. Sadly as soon as l stop back comes the pain, but it is less than it was. l usually get a couple of days 'respite' before the arms really play up again. So it's got to be regular archery for me. Gosh that is going to be really hard isn't it ;-)

Touch wood, I seem to be winning the battle in the arms at the moment. All because I know CRPS so intimately. Sadly lf I had known what I do now back in 2005 my mobility wouldn't have become so completely compromised. Sadly there are far too many people who get a diagnosis when the horse has already bolted and the damage is done. It's a sad indictment of the medical profession and the lack of serious research. I hope that changes and perhaps there will eventually be better treatments or even a cure.

But what now for me? Well, as ever I shall battle on, refusing to let CRPS get a bigger grip for as long as possible. Could I get it into remission? Will it eventually get the better of me? Who knows, but you can bet I will fight it every step of the way with every ounce of my being.....

'Treatment' for CRPS - really?

I'm prompted to write this post because of the way a good friend who also has CRPS is currently being treated. It raises wider issues for any of us who are chronically sick. The contempt with which medical staff treat people is disgusting especially when the interventions they are doing are experimental, untried and have uncertain outcomes.This may well be a bit of a rant but I feel so angry about it.

My pain consultant and I have a great relationship. We discuss everything. He knows I will ask questions he most likely wont be able to answer, but is secure enough in himself to admit when he has no idea. Or he thinks about it and comes up with the best answer he can. He realises I wont accept flannel and also have read widely about 'treatments' be it medication, or more invasive techniques. It is refreshing to feel that it is a partnership rather than being told what is going to happen. The sole purpose is to produce the best combination of medications which give the 'best' relief with the fewest side effects.
At the moment we agree that we have reached the optimum. I really need his input into what's currently happening to my arm and fingers. What he feels is the best way to fight the ever encroaching CRPS.

In contrast my GP doesn't understand CRPS and spends all his time trying to reduce my medication as he doesn't like me being on so many. He is right on one level of course but doesn't see that they all work together to counteract the various issues CRPS causes. He will prescribe whatever the consultant asks so it isn't an issue. I see the consultant every 6 months (ish) so my care is ongoing.

we tried a nerve block years ago, together with infusions which did b****r all and TENS was utterly useless. He's offered me a spinal cord stimulator (SCS) but admitted that the chances of it doing
anything were remote and more importantly that he couldn't guarantee it wouldn't make things worse. I am grateful for his honesty especially as I haven't heard a single success story where SCSs are concerned. Which Is where I turn my attention to CRPS 'treatments'

I have regularly stated in this blog that there is no cure for CRPS. They don't even know how it works for heaven's sake! As such 'treatment' is an anathema. Palliative care is all that's available. Unfortunately the pain consultants in this country seem obsessed with nerve blocks and SCSs as 'treatments'. Once medication fails to provide decent relief (and with the best will in the world they don't do much) their next stop is to recommend nerve blocks and then a SCS. There are other therapies available such as Calmare in the USA which has reported good results (and is non invasive) but the chances of getting it here are remote. You could be thinking 'what does she know?' and to a certain extent you'd be right. I have no medical training but I do know CRPS intimately. As such I am as well placed as anyone else to discuss the pros and cons of managing the condition.

The biggest problem in this country is that diagnosis takes forever. This is the worst possible thing you can do as not treating it aggresively in the first three months greatly reduces any opportunity of getting it onto remission and makes it so much harder to keep the symptoms even vaguely 'under control'. Take my arm, it has been causing me grief since March and as I write this I am no nearer getting to the Pain Clinic than I was back then. Were it not for the fact that I have been aggresively using it despite the pain and doing archery which remarkably seems the perfect therapy I can guarantee I would have lost much of the range of motion. Instead I still have full range of movement. It hurts badly, as well as showing other symptoms of CRPS. It isn't cured of course but it is under control. No thanks to the NHS. Purely because I know my foe, can lock horns with it and know how to fight.

Anyway I digress. Invasive 'treatments' such as a SCS are terrifying unless you are backed into a corner, wracked with pain and everything else that CRPS throws at you. Utterly desperate you'd try anything. I wouldn't but lots do. They sell it well. The SCS is fitted to the spinal cord and sends small electrical pulses down the nerves to the affected limb which interfere with the pain signals the nerves are sending. Result? Greatly reduced pain. Plus you can change the intensity of the pulses using a remote control depending on how bad the pain is. Sounds good doesn't it? A TENS machine is supposed to do a similar job but isn't invasive. Pads are placed in critical positions on the back and pulses are sent. My first question is why should an SCS do any better than a TENS machine that does nothing? Especially when they don't actually know for certain that this is the way CRPS works. It could be the brain interpreting the messages wrongly rather than the nerves sending pain messages.

Secondly, who in their right mind would allow a surgeon to place electrodes directly into the spinal cord and then tweak the voltage being fired down the nerves until an optimum is reached? Scary stuff with absolutely no certainly of success and worse, no guarantee that it won't do any harm. Now or in the future? What if the wires move? I am pragmatic enough to not reach for the 'Holy Grail', accepting that nothing has or is likely to touch my CRPS. Sadly there are so many who grasp the opportunity only to live to regret it at a later date When it does nothing or even makes things worse.

The worst thing though is that people are used as guinea pigs. I find it questionable what the actual motive behind implanting the SCS is. Are they really doing the best thing for the patient or is it more to do with gaining more data for themselves? Regardless of the poor sod who maybe worse off than they were before. Take my friend. He was fitted with a new version of the SCS. He has been in hospital over a week and at least part of the problem is his SCS. Their solution? Implant another one, see if it's better and then switch the other off. Really? Are they serious? Worse they haven't discussed this with him, seemingly intent on going ahead regardless of how he might feel.

This makes my blood boil. There are other examples of things being done to CRPS sufferers, with little discussion. Inappropriate physio that results in flare ups is another one. We seem to be guinea pigs to them, they don't understand it and are just trying things to see if it helps. CRPS is bad enough without tinkering that makes things worse. Most importantly though Doctors need to take into account the feelings, concerns and wishes of the patient. Only palliative care is realistically available. Of course we all want a cure but surely it's a no brainer that any intervention should be driven by patient need. Not given to see what it any effect it has.....

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!!!