Tuesday, 3 December 2013

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!

Monday, 21 October 2013

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.....

Sunday, 22 September 2013

'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.....

Monday, 16 September 2013

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....

Tuesday, 13 August 2013

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....

Thursday, 1 August 2013

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.....

Wednesday, 17 July 2013

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!!!

Wednesday, 3 July 2013

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.....

Sunday, 23 June 2013

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......

Sunday, 26 May 2013

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....

Tuesday, 9 April 2013

Where do the chronically sick fit into the new Welfare State?

Blog time again. My topic? The much published welfare cuts. Something small eh?

Anyone who has read my blog regularly knows that I receive two benefits, namely Disability Living Allowance (DLA) and ESA, having recently been successfully migrated into the Support Group of ESA for Incapacity Benefit. For me the migration went incredibly smoothly, they took less than a month to make a decision, didn't call me for the dreaded WCA assessment with ATOS. I filled in the form, it must have gone very quickly to a decision maker and the rest as they say is history. Although it was a huge relief to be migrated so easily compared to so many others, I have to admit that it is a very sobering and upsetting realisation to have it acknowledged that I am so bad I was an automatic 'to support group'. Yes, I know I'm realistic about my situation, but the numbers of people who have got into the support group without a battle is small. Really small. And I was one of them.

I also get a paltry Teachers' Pension (on which I pay tax I hasten to add!). We don't get housing benefit, council tax or anything else. Eric gets no help from social services (we did get some money to pay for a cleaner when he broke his arm but that has stopped and didn't cover the cost anyway) despite the fact he cares for me 24/7 with no respite at all. His Carers' Allowance ended when he reached 65. Apparently you are no longer a Carer once you've retired. Of course for him nothing changed. His care for me is the same as ever.

Get to the point I hear you cry! Here goes....
I am getting more than a little sick and tired of being branded as someone who is 'a skiver', 'sees benefits as a lifestyle choice' or any of the numerous, derogatory phrases and arguments being banded around in the press and on the news. It seems that anyone on benefits is fair game, we are targetted by politicians, newspaper columnists, and numerous others. Too many to list here. Google welfare state, look at Twitter or FB, the evidence is all there to be seen. I, like every other genuinely chronically ill  person find myself being lumped in with everyone else simply because I can't work. I detest being disabled, I wish I could work. It'd be there like a shot!! It certainly isn't by choice that I live as I do!! To be blunt nobody would want to live as I do. I don't want to be dependent on benefits, I want to still be teaching, making a difference to children's lives. Not a burden on my husband, dependent on him for everything. All day, every day....

I can't dress, get up, leave the house without significant help. I can't access the kitchen, let alone cook. I live in a reclining chair with my legs up because this is the only way to make life 'easier'. I take so many powerful drugs I would be a health and safety risk. 50-60mg of Morphine are flowing round my system 24/7 and 14 plus other drugs which try to counteract the symptoms. There is no cure, I will be like this to my dying day. That's me being realistic. Something may come along that will help more but my CRPS is so entrenched that nothing will get rid of it. My Consultant has said as much. I challenge anyone to be able to concentrate for any length of time, hold down a job or simply have any quality of life living as I do. Yes I do archery and go to speedway but only because I'm a cantankerous, stubborn wotsit who doesn't care just how bad I will feel for days after. I know I shouldn't be trying to do these activities, they are way too much to cope with but I will continue one way or another. Until I really can't, which I fear inevitably will be the case.

So why am I and other genuinely chronically sick and disabled people constantly being lumped in with those who are able to go out to work but don't? Treated as second class citizens, unworthy of a place in society, let alone have a voice. 'Those who go out to work do the right thing, those who don't are doing the wrong thing' George Osborne recently said in a speech. So I'm doing the wrong thing? How insulting is that? But what recourse do I have? None. The British public agree with the changes to the welfare state we are constantly being told. 'Working people are sick of being worse off than those on benefits'. Does this mean everyone who gets benefits of one sort or another? Those on JSA? Housing Benefit? DLA?Who knows? About the only acknowledgement to those who really are too disabled to work is the rather throwaway 'we will help those with genuine need' or something similar. Can't remember the exact wording because it is always the other  comments that make the news etc.

Don't get me wrong, I want a system which encourages people to work and rewards those that do. As I've already said I would be working if it were at all possible. Please, catch the fraudulent claimants, those who screw over the system and should be working. Those who claim to be too ill to work when really they could. I don't want to be associated with them. But we are. It has also been well documented that large numbers of people have been declared fit for work or placed in the work related group when claiming ESA, only to have this overturned on appeal (approx 40%). The system isn't working but this is largely overlooked because the Government never publicises it. It instead constantly tells us what a burden those on benefits are as I discussed above. 

How on earth do you try and raise awareness about cuts that are having a devastating effect on disabled peoples' lives? For example, the bedroom tax. When you phrase it in the manner the Govt has it seems to be a no-brainer. I didn't actually know that housing benefit paid to those in private rented accommodation excluded spare bedrooms. So on the face of it that sounds fair enough. Do the same for council houses. But what happens if you have a Carer who regularly stays overnight because the the person can't be left? Or your partner and you can't sleep in the same bed because your illness or disability make it impossible? Or you have lots of medical equipment that needs to be stored somewhere as is the case with a lot of conditions. My electric wheelchair takes up loads of room. Oxygen tanks, monitoring equipment, the list goes on and on. Surely there is a case for those with 'genuine need' to be exempt from the bedroom tax? Apparently not, we are all lumped together. 

I do wonder sometimes if the politicians actually believe there are people 'with genuine need'. Those who are placed in the work related group of contribution based ESA get their benefit for a year. These are people who are believed to be able to get back to work with appropriate help. Unfortunately a significant number of people placed in this group simply won't be capable of achieving this. Once the year ends their benefit stops and, as if by magic, they are supposedly healed and now fit for work. No review, that's it. I'm not sure what they're supposed to do after that, disappear into the ether I suppose. 

I could provide so many more examples of how the welfare changes are not fair for those in society who cannot work because of illness or disability. The Govt would have us believe that their changes will make the system fairer and that it will 'always pay to work'. Spare a thought for those who will face serious hardship having no way of going out to work if their benefit were to be reduced or suddenly stop. If my benefits were stopped I could do absolutely nothing to bring income into the house. No matter how much I might want to, it would be impossible. Where would that leave us?

I shall end with this for you to ponder....
The underlying principle of the welfare state has always been that a caring society looks after those who cannot provide for themselves or acts as a safety net for those who have fallen on hard times. Does the new look welfare state really do that? What does this say about our society, is it really a caring one anymore?

Thursday, 28 February 2013

In sickness and on welfare

To summarise the last week - I've finally won one battle that was horrendous and something else that could have become a horrible nightmare didn't. Does that make it a good week or a bad one? I'll let you decide....

Winter vomiting bug, Norovirus, gastroenteritis, stomach bug. Whatever you call it, I have been battling with it since last Thursday evening. I won't go I to details, many reading this either will have had it, currently have it or will at some point get it (sorry). What I will touch on is just how much harder it is to cope with when you already have a chronic condition like CRPS.

You're throwing up into a bowl because no way can you get upstairs. The violent nature of the vomiting means other unwanted by-products are produced elsewhere (use your imagination). Remember I can't get up without help, and we (me wrapped in Eric's arms) can only shuffle along at best. This is not a good situation. When the vomiting happens on the hour, every hour throughout the night you very soon have absolutely no idea what to do with yourself. Don't forget that I sleep in my reclining chair. It was nigh on impossible to find a position which eased the nauseous feelings. We tried the emergency anti-sickness sachets I always have in reserve in case of migraine. These are dissolved in water. Straight back they came, as did anything else. Poor Eric had no idea what to do with me. Bella (my Border Collie) was scared and couldn't cope with me being sick, so kept running away upstairs. Bless her, she always came back up on my lap as soon as things had settled. Until the next time. And so it went on through Friday and beyond. It was only by Wednesday of this week that I finally started to eat anything like normally again. It felt like a lifetime...

Being in chronic pain it is vital that I take the arsenal of meds at the right times during the day otherwise my legs become essentially useless. The pain becomes so great that I can't really stand or weight bear even with help and there is no chance of sleep because the pain makes it impossible. This was clearly a huge issue, especially for my Morphine MST, which is taken every 12 hours and can't be taken again if you bring it back up.  Oramorph was clearly not an option. My GP prescribed medication to try and control the sickness and told us not to worry about my usual meds because the emphasis had to be on getting the sickness under control. So not only do you have a really nasty stomach bug, you have less control over your pre-existing condition than the little we usually manage. It was becoming a horror story.

For the next five to six days I've been held together by two lots of anti sickness drugs and anti diarrhoea tablets. You can only starve yourself for so long and some of my CRPS meds generally should be taken with food. So we had to try and start getting something into me. Tiny amounts of food, backed up with sickness sachets meant I was getting something into the system, but even so I spent long periods feeling very 'green around the gills'. 

Logistically it was horrible. Normally when you're unwell you take yourself off to bed. Of course this isn't an option for me, so I was stuck trying to get myself into a more comfortable position that would enable me to feel as good as possible. Of course I couldn't turn sideways or lie down so I was stuck in a semi upright position with my head only supported at the back by my pillow. Not ideal by any stretch of the imagination, and certainly hindered my improvement. I yearned to lie down, snuggle into a duvet, but of course for me this is impossible and would have been made the CRPS far worse than any small benefit it produced. The other problem of course is that I live downstairs, so no chance of a real quiet. Eric was amazing, turning the lights off in the evening and sitting in the dark because I couldn't cope with light at all. However with the TV on and the dogs coming and going it was a 'busy' atmosphere and made me feel worse. He cooked for himself as little as possible because the smell of the food made me worse.Of course the other major problem was that I was stuck in my chair as always. Couldn't get a breath of fresh air. Go and sit somewhere else, do anything to try and distract myself. I could only sit and fester. Another example of how a chronic condition makes things harder.

Thinking back to the first night, there was a point when I seriously considered asking Eric to call for an ambulance. It would have been sensible after all. I was wretching violently long after the point I had anything to bring up. Couldn't keep anything down long enough to try and control it. At A&E they could have sorted me out with a rehydration drip and injected anti sickness meds into me. Sadly there was little point. The restrictions the condition place on me make going to someone's house impossible. What would they have done with me? How on earth would they have got me into a bed etc? I couldn't have coped with the ambulance ride let alone anything else. Being handled would have been so painful it would have only added to my ordeal. I'd have been even more uncomfortable there than at home. It must seem hard to comprehend but trust me, going to hospital simply wasn't an option. No, I had to sit it out at home and hang in there. 

So here we are, a week to the day, and I am off all the sickness meds, 'only' having to deal with what CRPS throws at me. Never thought I'd say it but for once I'm grateful. It has been complete and utter hell. However as I alluded to at the top I have had some great news. A battle we won't, as it turns out, have to fight. Namely my Incapacity Benefit to Employment and Support Allowance transition. A previous blog covers what I went through to complete the form, but needless to say it was incredibly tiring, stressful and made my CRPS worse. I could go as far as to say that it laid me open to the bug I've just had and a virus I had before that. 

A brown envelope ironically arrived last Friday, exactly when I was feeling at my worst. My heart sunk. What did it say? Were they going to call me for a 'face to face assessment'? Had they put me in the work related group which would mean I would be expected to go on courses and have interviews at JobCentre Plus that would 'help me back to work'? I opened the envelope and the first thing I saw was £110.45. Seeing that number made me punch the air in delight. I have been placed in the support group. This was always where commonsense said I should be placed but after all the nightmare stories I've read and heard I was always very nervous and worried. 

In actual fact the transition couldn't have gone smoother thank goodness. They didn't call me in, made a decision quickly and I can now relax again, safe in the knowledge that I will continue to get my benefit. There was no review date given so I have no idea if or when they will ask me to fill in the form again but in the meantime they will leave me alone and in peace. I can concentrate on just trying to get through each day again, thank goodness. Wonderful, wonderful news!!

The process of applying for ESA, having now gone through it (in part) worries me greatly. The form is ambiguous, very long and to give sufficient detail to describe what life is like you need to really spell it out. Ok, I have CRPS, but my brain still works as it did so I can write about my condition, symptoms and their effect on my life. What happens if somebody can't do that? For whatever reason? Say, for example, all they can do is tick the boxes and perhaps write a few words. They could be just as disabled as me, but someone reading the form will have no idea. How could they? 

That is where the face to face assessment for ESA should come in as the safety net, as the medical did for Incapacity Benefit. I obviously can't comment as I haven't had the ESA one. I did have an IB medical when I first applied. However the numbers seem to speak for themselves. A quick Google search reveals just how many genuinely deserving people are being declared fit for work or being placed in the wrong group. 40% of appeals against the initial award are successful. That simply isn't acceptable and surely means the criteria by which these assessments are being made is flawed at best and not fit for purpose at worst? We are talking people's lives and financial stability here. These are massive, life changing decisions that are being wrongly made. Causing huge heartache and in some cases resulting in people committing suicide or dying (eg. for those with cancer or terminally ill) before their appeal is heard. 

Don't get me wrong, I'm all for catching those who are claiming fraudulently. They deserve everything the law can throw at them. Particularly as it is them who give everyone on benefis those terrible labels 'skiver' or 'scrounger' The UK has always been immensely proud of it's welfare state. It's caring society. I leave it to you to decide whether you think we still have a 'caring society' any more?

Saturday, 16 February 2013

Reality check.......

It's been a horrible week. As I write this I have, for once in my life been sensible and have decided not to go to archery tonight. A rare moment of weakness you might say? Perhaps.... or perhaps not. To be honest I don't feel up to writing this but here I am. Better get on with it then!! 

I have done nothing this week other than archery on Saturday, after which I had the horrific shivering episode (see last blog post if you haven't read it - it's all in there) and then archery at home on Tuesday. The rest of the week I've done nothing apart from play the odd video game (when I could), read a few pages of a magazine or my book and sit in my chair festering. I have had massive problems with my legs, eyes and head. I have lost complete days because my eyes have had to be completely covered, being intolerant to the slightest amount of light. The pain as ever has been awful, but when your head, eyes and legs are all thumping, burning, stabbing with pain at the same time, life isn't much fun. In fact it isn't life at all. I have sat in this chair willing myself to sleep to get away from it, with mixed success. Each time I woke my immediate thought was 'has it gone?'. Again with mixed success. Of course the pain in my legs never goes but to date my eyes have generally recovered over the course of a day. I then go for a period of time before they flare badly again.

..... continued, Saturday morning

It is a worrying development that my eyes are featuring so frequently in my payback now, although we already know that they are affected by CRPS. I suspect the intense concentration needed to focus on the target arrow after arrow is at the heart of that. Like my legs, using my eyes too much (by CRPS standards) causes payback. It explans the regularity of them flaring in recent times. The trouble is that there is no way to distract yourself from the pain when the eyes and head are affected. The activities mentioned earlier are my staple ways of trying to take my mind off the pain. Indeed when your mobility is so compromised, activities are reliant on using your eyes and brain. Take these away and what's left?

It seems that whatever I chose to try and do CRPS does all it can to stop me. The harder I push the harder it pushes back. Of course this isn't breaking news, it's been an ongoing battle between doing things and the payback that results. However the events of last Sunday in particular have really given me a wake up call. More than this it has forced me to acknowledge  the reality of my situation. I'm struggling to find the words, to express how I feel about it all now but there's a definite paradigm shift (Newtonian Physics to Quantum Mechanics anyone!!).

..... continued, Saturday evening

I think the fact that this is my third attempt at writing the nitty gritty of this post, shows just how hard it is to admit to yourself the brutal reality that is your situation. I have always prided myself on doing things that by rights I shouldn't even attempt but really enjoy. This is regardless of how I feel before and during as well as the consequences they bring. Speedway was my line in the sand. Archery joined it. I have of course tried to do archery more often than I should have and paid the consequences. I always thought to myself 'there's nothing physically wrong with my legs, I can't make them worse. It's just pain, then the inevitable payback and I can sit that out'. That's worked for the last seven years but the events of last Sunday morning have shaken that philosophy to it's very core.

I want to make a joke of it and say 'hello, my name's Jane, and I'm severely disabled and chronically ill'.  I never understood why people say I'm brave, an inspiration or they don't know how I cope like I do. I'm not saying I do now but it has dawned on me just how bad I actually am. It's a sobering thought I can tell you. I felt a bit like it when I was filling out the ESA form, spelling out the various symptoms and just what was involved in enabling me to do anything. The fact that I am reliant on Eric for absolutely everything. My payback is consistently worse and more debilitating (if that's possible). It takes longer to 'recover' and I rarely leave the house. Not because I've given up, far from it. No it's because it just takes so long to recover. Oh, and because I will insist on doing things like archery again before I should!!

I now have 50mg of morphine flowing round my body 24/7 as well as the other 14 (at the last count) meds. 50mg!! 60mg with Oramorph!! Hard to process that when you see people on the TV seriously hurt being given 10mg of morphine and their pain vanishes. It all helps but nothing takes my pain away, or the burning and everything else CRPS throws at me. Touches it at best. It's madness to be taking that yet still be unable to do anything other than shuffle a few metres clutching onto Eric. Is it really any wonder why I end up in such a terrible state doing archery? 

Worst is that it will only get worse, CRPS just keeps coming it seems, affecting more and more of my body. Where will it stop? Will it? Who knows the answer to that, I certainly don't? There certainly isn't any cure on the horizon. But if I'm going to carry on doing archery and speedway and perhaps getting out for the occasional walk with the dogs in my wheelchair I have to get better at the two things I'm absolutely lousy at... PACING and BEING SENSIBLE. Not words you'd expect to find in my vocabulary. Well if the last week has taught me anything, it is that I have got to be far more careful, oh alright... sensible. Not going to archery was the right decision because I do feel better for it today. I never want to experience that shivering nightmare again that's for sure.

Payback certainly won't stop me doing archery,  just as it won't stop me going to speedway. Those lines are still firmly drawn in the sand. But I will be trying to be just a bit more sensible and pace myself better. Who'd have thought it!!

Sunday, 10 February 2013

Not something I'd want to go through again!!

Eric took this seemingly comical photo of me with Kai perched precariously on my shoulder sometime after 5am this morning. What was really going on was a frightening episode for me, him and the dogs.

I woke up shivering. I don't mean the shivering  we all do when we experience a temperature drop, say when we go outside.. This was full on, completely uncontrollable shaking of my whole body. My teeth were chattering, both eyes were agony. Everywhere hurt, I couldn't move at all, I had no strength in my muscles. I didn't want to wake Eric. However after about 15 minutes snuggled under the duvet with my fleecy blanket it was just as bad. I had no other option. It was frghtening, I couldn't understand why I was in so much trouble. I didn't know what to do with myself. For some reason my knees were bent, so every shake was agony. I couldn't relax the legs at all because every time I tried the the pain was even worse. I was screaming in agony, couldn't find a position that reduced the intensity of the pain.

As ever Eric was brilliant. He went off and found lots of blankets which he put over me and tucked me in. a cup of tea with a bit of sugar in it appeared. next came Oramorph which really helped as it slowly enabled me to relax my legs a bit. The blankets made very little difference initially, it was more than an hour before the shivering calmed down and I started to warm up. More cups of tea appeared, and he didn't stop watching over me. Eventually I managed to get back to sleep and as I write this now I feel a million times better than I did then. Still awful but at least it is now the usual 'payback' that comes with doing anything. It's never pretty, but this was something else completely. My crime? Archery coaching.....

Right, back to the photo. Bella can't cope at all when I am particularly bad and either runs away or refuses to leave me. In this case it was the latter. Despite it making everything worse she refused to leave me. We'd get her to jump off but then immediately she would jump back up. Eventually Eric managed to get her to lie on the bed next to me. As soon as I woke up she was back up on my lap. As ever, I wonder what I'd do without her. Similarly, Kai was determined to look after me as well. I couldn't see what he was doing because I had sunglasses on with the fabric case over the top to block out the light. How he ended up there I have no idea.  Eric lifted him off so he did the next best thing and sat on the box I have next to my chair, pawing at me to stroke him. Aren't dogs brilliant? They bring such comfort and support.

I truly hope I don't have to go through that again. It was frightening to be in that state, which has to be one of the worst episodes I've had after doing something. Perhaps it was because of the virus I've had all week, I wasn't over it as much as I thought. I will never know I suppose. It is worrying that the payback seems to have been ramped up a level recently, but I have to keep doing the things I enjoy (archery and going to speedway) regardless. The alternative is a life sat in my chair doing nothing. CRPS got the better of me this morning, but the fight goes on......

Tuesday, 22 January 2013

My turn for the brown envelope....

Nearly 7500 words....

That weighty number is the final word count for the ESA form I finally finished a week or so ago. I toiled for some 15 days on the damn thing, doing some until I felt too ill to carry on. Slept for a few hours and then toiled some more. Very early on I realised that I simply can't cope with filling in something like that anymore. It has taken me this long to feel up to writing about the experience.

To be honest I can't do anything much that an able-bodied person would consider trivial. A simple example. We have had a self install upgraded cable modem from Virgin which has been sitting upstairs since way before Xmas. I've had two text messages from them asking me if I had a problem installing it. If I needed support then give them a ring and they could talk me through it. Doing it wasn't the issue was it, I can do all that standing on my head. Or rather I could. No the problem was that I couldn't get upstairs and sit on a normal chair long enough to do it!!! Eric can't do these things, so it has been a case of waiting till I felt up to it. that in itself being a contradiction in terms. I never feel up to doing anything. If CRPS had it's way and I wasn't the stubborn, cantakerous wotsit that I am, I would do nothing. That means absolutely nothing, not read, play games, get up, go out at all and certainly not do those mad activities like speedway and archery that define my battle to do something I enjoy!! 

Anyway the day had come so I went for it.  It was torture, had to phone up to activate it which seemed to take forever. Not aided by the fact that it was really hard to understand what the person I was talking to. By the time I'd done, I couldn't move, was in total agony and I somehow had to get down the stairs back to the comfort of my chair. I don't know how he does it, but Eric cajoles me along and we somehow get there together, I crashed out almost immediately and when I woke....well let me just say I felt I'd been hit by a very large lorry. Legs utterly off the scale, world spinning etc etc. Good old Oramorph, helped me as it always does, but it was just another reminder, if any were needed, so how little I can do.

Which brings me back to the ESA form. I got the brown envelope a couple of weeks before Xmas, had my telephone call, with, what seemed to be a very nice person at JobCentrePlus. The form arrived and seemed pretty similar to the Incapacity Benefit forms I'd filled in before. Having read so many horror stories about people being placed in the wrong group, the way they interpret the form in ways that beggar belief, and of course the flawed face-to-face assessment I was determined that they were going to get the fullest picture of what CRPS has done to me, it's impact on my life and health. Most importantly I would do all I could to explain in as much detail as I could manage, how coping with life is hard enough, and how, much as I wish I could, work is about as far away as the moon. 

I had downloaded a guide to help with filling in the form. It is scary the way the form can interpreted in a completely different way to how the question is phrased. For example the 'imaginary' wheelchair. If someone can't move 50 metres unaided or use crutches etc, they can award points on the basis that if  they had a manual wheelchair and they think the person could push themselves along for that distance then they get no points. Doesn't matter that they haven't got one. This 'logic' is set to be expanded on 28/1/13. This will bring in 'imaginary' guide dogs, prosthetic limbs. They are even going as far as to say that if someone hasn't had all available treatment options available then they will be awarded on the basis that if they did they could get back into work. How on earth a decision maker will have the necessary knowledge of every condition to make such a decision is beyond me. Scary? Terrifying? I'll leave you to decide....

Early on I decided to go the electronic route.  Could phase and re-phrase, say exactly what I wanted with more space to get the detail in. Looking back it is safe to say that the form is completely inappropriate for someone like myself who can't concentrate for long. Every section takes forever to fill in when you have a complicated set of symptoms like CRPS. There is so much to get on paper, if you are going to properly explain, and show what your situation is. Even trying to explain just how much is involved in getting me out of the door to attend an assessment and the problems I may face when there took far more space than the box allowed had I handwritten it.  

As an aside it wasn't until I tried to print the form at the end that I realised the boxes have no limit on characters. Printed you couldn't read the text at all so I then had to cut and paste enough into the box to make it legible and then put the rest of the text on overflow pages. Don't forget I was a teacher so I have the knowledge to deal with these things. There are so many people out there who can't. What are they supposed to do? Is it any wonder that people are being put in the wrong group when the form sets them up to fail? What about those with mental health issues? How on earth do they fill in the form in the first place? There has to be a better way surely?

I spent some time every day bar a couple filling in that form virtually from the day I received it. It was horrible and incredibly stressful. not good when stress only provokes a flare in all your symptoms. I woke each morning exhausted from the day before with my legs worse than before. My eyes were really painful because I was looking at the iPad too much and they can't cope with it. CRPS again. Despite this I had to tried to focus on writing some more, or re-writing what I had written to ensure it made sense. I cut and pasted from previous applications and then re-jigged it. Just as well we are organised and have electronic copies of medical documents from Consultants (thanks go to Eric for that) so could just print a load of supporting material off to go with it. When I wasn't working on it I was sleeping. Well crashed out really, having had to stop because I felt so terrible. When I woke, it was back to the form. It hung over me, especially as I had to get the form back to them before 22nd January. I even got another letter pestering me that they hadn't had the form back. Dated 13th January. I was stressed enough, without that I can tell you!

I worried that I would never get it done so looked into what happened if I couldn't. Draconian measures to say the least. You have to write a letter explaining why you didn't get it done. Err, I'm in no fit state to do it at any time, let alone in a few weeks! Laughable, but then all people on sickness benefits are scroungers anyway aren't they? It makes me so angry... Anyway, having sent the letter, it is up to the decision maker to decide whether your reasons for being late are 'acceptable'. If they decide not then they can refuse to look at the form, reject it and declare you fit for work. It beggar's belief doesn't it? How can vulnerable people be treated like this?

I did get the form filled in thanks to my husband and a wonderful, close friend (you know who you are my friend) who proof readit, and got it off in time. Their reassurance was so important. What was left of me by this stage was someone incredibly stressed, struggling with a major flare, exhausted, mentally drained and terrified that I hadn't done enough to explain my condition, the impact it has on my life and the problems I have doing anything. It is still hanging over me, and will do until I hear from them with a decision. I am really hoping that they will put me straight into the support group without an assessment. I don't see how I can be put anywhere else but who knows? It's on my records that I shouldn't be called to a medical because of the severity of my condition. Will this matter? Ordeal springs to mind about the whole process. I have absolutely no way of replacing the income should they reduce my benefits, so where does that leave us? Exactly as we are but worse off. So we wait for the next brown envelope or a phone call telling us what happens next. 

Don't get me wrong, I am all for uncovering those people who claim to be disabled when they are fit and able. But to treat everyone as if we are 'scroungers', 'on the take' is so wrong on many levels. The Government claims that they are supporting those who have genuine need. Well if anyone fits into that category I do. We shall see in the coming weeks whether the Government really does mean that. Or whether it's just about saving money by targeting those who can't fight back. 

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