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!!!

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......

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?

Never enough spoons....

I had never heard about 'spoons' until I saw them being mentioned on Twitter. Intrigued I read some blogs and began to understand why they are so good at explaining the constant struggle I have trying to do anything without CRPS wiping me out and making life even harder. The current overarching battle I'm fighting is trying to exercise or rather how little I can do. It always has and continues to drive me insane, especially when I look back to the pre CRPS days when I used to play 36 holes of golf, carrying a full set of clubs. Worked as a full time teacher with all that involved. I loved exercise, pushing myself in the gym, always trying to do more. Now I am desperately trying to do just 15 minutes of table tennis or boxing on the Wii each day, and even that seems to be too much. I can only use my upper body, doing it whilst sitting in the chair with my legs elevated. Let me try to explain it using 'the theory of spoons'.

The idea is that you have a limited number of spoons each day, each spoon providing energy which is used up doing things. The more you do the more spoons you use up. So what happens if you use up all your allotted spoons for the day? Well in a similar way to calories if you are dieting you then start to 'borrow' spoons from future days. Of course this assumes that you will do less on another day, not using all the spoons for that day and get yourself back on an even keel. The ideal would be that you only do enough to use up your spoons for each day and so consistently remain on an even keel.

Still with me? Now lets apply this to me and my situation. I can cope with the fact that the number of spoons I have available to me is less than when I didn't have CRPS. However I still haven't found, some six years later, just what my number is. I know it's very small, that's obvious. It has to be because regardless of how little exercise I try to do I will literally grind to a halt, presumably exhausting the entire week's spoons in a few days or less. Over the years I have tried to exercise for varying lengths of time, always with the aim of doing some two or three times a week. It never happens, I manage a couple of sessions and then I am so bad that I simply can't continue the regime. A week or more is then wasted whilst I recover, before I try again, changing the length of time and/or the frequency. Add in the occasional trip to Lakeside, hospital appointment and it soon becomes a complete nightmare. There simply aren't enough spoons no matter how 'good' I am. I always overdo it and pay the penalty.

Worst case scenario occurs during the speedway season. In just one evening goodness knows how many spoons I use, but it must be at least a weeks' worth because I wake the next day having been completely destroyed. I spend the next week limping along unable to do anything apart from fester in my chair and wait for the punishment to end. If I'm lucky I get a day or two of 'normality' before another meeting is upon me. Of course me being me, I still try to do other things which makes everything worse. Eric gets so frustrated with me and does his best to save me from myself, forbidding me trying to exercise etc. I know that I'm my own worst enemy, always wanting to do something, rage against the condition. I can't help myself!!

Having so few 'spoons' is so very hard to accept, because the reality of that means my life would consist of me doing virtually nothing, not go out at all, not try to exercise, nor do some gardening in my lovely raised veggie beds. I can only manage one bath a week as it is, brush my teeth in my chair (Eric brings all the stuff to me), am forced to use a commode, can't get around the house, let alone help with the housework or prepare food. I can't do any of that because of my appalling mobility CRPS has caused. I can only play a video game for an hour or so first thing in the morning when Eric walks the dogs.  Of course this renders me incapable of anything other than sleep for a good part of the rest of the morning or I'm stupid and we go out and then the rest of the day is even worse.

I am so sick of feeling rubbish, grinding to a halt, being in such pain and everything else I have to put up with for daring to do what amounts to very little. However the alternative, namely sitting in my chair doing nothing all day every day doesn't bear thinking about. So I shall continue to try and do my 15 minutes of exercise on the Wii each day and all the other things that I don't and never will have enough spoons for. Let's face it I feel rubbish so regularly anyway, I may as well have something good to remember why I do!!

What's the point?

Is it the time of year? You feel more reflective than normal, looking at your life, taking stock? Comparing it to others? Probably, but for me, it also represents another year of living with CRPS. I generally pride myself on being positive, trying to make the most of the lot I have been dealt. Always seems to fall apart at Christmas, especially when friends come round.

Someone who also suffers from CRPS mentioned on Twitter that they hate this time of year because people they havn't seen for ages ask how they are and they found it easier to just say that they were fine. I can empathise with this as it happens to me, even with people I consider close friends. I have no idea what to say to be honest. How can you put in words what I go through, what my life is like, my pain and everything else? It sounds ridiculous to me and I'm the one suffering it! If I do try there tends to be a pregnant pause where they don't really know what to say, feel awkward or whatever. I can't blame them, would I be any more coherent were our position's reversed? I would like to hope so but who knows? Inevitably our chat rapidly turns to what they've been doing, their problems, how rubbish work is, the normal worries and troubles of life. It is so nice to hear about the 'normal' world, especially as mine is anything but. Sadly it also serves to remind me of all that I have lost. I support them as much as I can. Wonder if they realise how much support I need to get through the days, weeks and months?

I think people find it hard to take on board the fact that I'm no better now than I was the last time they saw or spoke to me. That I'm stuck like this for life and there is no cure. That I won't get better. I find it hard enough myself at times!!  Unless you lived with me, there is no way you could comprehend just how little I can do for myself, how much help I need to do anything. Without Eric's constant attendance, love and support I could not exist. Couldn't prepare food for myself, leave the house, do any housework, however trivial. Couldn't manage my personal hygiene, dress myself etc. I am trapped in a prison consisting of my electric chair and the living room. The only other rooms I access are the toilet and bathroom. Oh and the garden but that is in itself a military operation. I could order food online but then couldn't get to the front door to collect it, nor carry/unpack it anyway as my arms are busy trying to keep me upright by holding onto whatever is nearest. I can't do this for more than minutes anyway before the pain is too unbearable that I must sit before I fall over. How do you put that into words? That for me, going out to a shopping centre for a couple of hours is a major achievement which will take me days to recover from. Only somebody completely insane would put themselves through what I do to go to speedway. What does that make me then? Answers on a postcard... 

I know that people care about me but I feel I have to shield them from the degrading nature of much of my life. A couple of friends looked after me 24/7 for a couple of days when Eric had his broken arm operated on. My friends had to empty my commode, can you think of anything worse? It certainly gave them an insight. I did as little as possible as I was so embarrassed, mortified even that they had to deal with my daily needs. Didn't wash, just watched TV and chatted. Oh and of course slept because it was so tiring talking so much when normally I don't. They were wonderful, staying throughout the night to ensure I was ok. They did all they could to make me feel better. My upper body strength is significant now so I regularly pulled them over as the helped pull me up out of my chair. The whole thing was just awful, I didn't want my friends to see me like this. Would it have been easier with strangers? Don't know as we receive no carer support at all, apart from money to pay for 2 hours of cleaning a week. A godsend for Eric but frankly a drop in the ocean when he has to do everything.

So, to my fears, worries or whatever you might call them that seem to force themselves to the surface at this time of year. As always I shall just shoot from the hip. Let us start with my future existence. I am 41 in February, Eric is 65 in April. I'm sure I've said before that I always saw the future as me looking after my wonderful little man when the time came. The age gap has never bothered me, he is my soulmate, the man that I want to share my life with till death do us part. He is the only man that has ever had a place in my heart, my one and only boyfriend and subsequent husband. No-one could fill his shoes, they broke the mould when they made him. Looking into the future is strange. My life will effectively end when I lose him (assuming he goes first, no guarantee of that of course). I accepted long ago that I will end up in a home somewhere as there is no way that I could cope with even the most basic tasks of living. I can't even make it into the kitchen, let alone do something productive when I get there for example.

We have no children, and I have no family. My options therefore are somewhat limited to say the least. I either have to employ someone to be a full-time carer or be put in a home for people with similar needs as I have. Bizarrely, or perhaps not, my main concern is whether I could have a dog. Can't imagine life without one after all these years. I honestly don't care where I end up, won't be life without Eric anyway, so just somewhere to see out my days. I have thought about Dignitas, but how would I get there and for that matter who would take me? Eric wouldn't want that anyway, and I couldn't let him down. So the house will get sold and the money will pay for my care. Until it runs out and then who knows what happens next? A little worrying when you see the state lf some of these places but if that's your only option what can you do? What is certain is that my future will be a lonely and painful one where I have little say over what I do? Is it any wonder I generally bury such thougnts as deeply as I can?

I try not to think about the number of years ahead of me. 30 years, 40 years, who knows? Facing the same daily battle with my condition. Daring to defy CRPS, only for it to bite back even harder. Forcing myself to do things that I know I will pay for tomorrow or longer. That all too familiar 'hit by a bus' feeling you get for daring to do something that most would take for granted. The constant pain, exhaustion and sheer frustration of it all. People talk of 'flare ups'. I don't seem to get those, there are no better days. My CRPS is relentness, unforgiving and doesn't give an inch. That's why I try to remain positive. Tomorrow is going to be like today or worse, so feeling sorry for myself or feeling down isn't going to make a blind bit of difference. Get on with it and do what I can, that's my philosophy.

This time of year always makes me maudlin. New Year? Pah! Just means there's another one to get through, with everything that entails. It is incredibly frustrating to lose your independence so completely that you are totally reliant on one person to exist. Thank god for Eric, whose boots would be incredibly difficult to fill, nay impossible.

New Year's resolutions? Keep sticking two fingers up at CRPS, continue to keep all of the above out of my thoughts till this time next year and do all I can to ensure Eric's life is as happy and fulfilled as possible....

Not the best of Anniversarys

Six years ago yesterday (16th December) CRPS decided to knock on my door. It feels a lifetime ago, and in some ways it literally is, bearing in mind how completely different life is for me now. I generally hate this time of year because lets face it getting CRPS isn't really the sort of thing you celebrate is it?

Spare a thought when you're having a fantastic time this Christmas, for those people for whom it is the same as any other time. A time when you just try and get through each day before taking on the next. There are so many people out there worse off than every one of us. I, for one, hope everyone has as great a Christmas as they possibly can....

Oh no, not a cold!

Let's face it, having a cold is a miserable experience for anyone. The tiredness, the 'bunged up' feeling, being cold or hot, headache and so on. Spare a thought for the CRPS sufferer or anyone with a chronic condition for that, matter. Not only are you trying to cope with the pain and everything that you deal with on a daily basis, but you now have all that a cold throws at you on top.

This is what I've been struggling with for the last week and a half. Of course my medication helps to a certain extent. The codeine in the co-dydramol stops the runny nose, but you are left feeling thoroughly congested and foggy headed. I slept even more than normal, losing complete days in the process. I never sleep in the evening, so that hopefully I don't wake too many times in the night. That went out the window, so that I was awake when I should have gone to sleep!

Having a cold makes life completely impossible. I have been totally exhausted so we haven't even thought of going out. My balance was even worse than normal, making even standing up immeasurably harder. I felt utterly awful and of course couldn't keep my mind off the pain as well as normal. It pretty much wiped me out, so I could only manage to do puzzles, reading etc. for a few minutes before having to give up. Where I normally play a video game whilst Eric is out walking the dogs, I went to sleep with the controller in my hand, only waking when they came back. It is so hard to adopt the usual pain minimising strategies when you can't think straight. It's hard enough at the best of times!

I can't get rid of the damn thing either. Was feeling a lot better at the weekend so played tennis on the PS3 Move on Sunday. I had been itching to do something as it is so incredibly frustrating and boring just sitting in this chair all day, all night. Didn't play for long but realised it was a mistake almost immediately I'd finished. Felt as bad as ever and still do as I try and write this a couple of days on.

Of course my legs have misbehaved as much as ever, with my feet lurching from ice cube cold, to furnace hot seemingly at will. As long as all the usual stabbing, burning and any other types of pain you can think of. And the swelling, etc

This is the first time I've had a cold in as long as I can remember. I certainly don't want another anytime soon..

Searching for the Holy Grail?

CRPS is a neurological disease where the sympathetic nervous system stops working properly. In essence either the nerves are firing off false pain signals to the brain, or the brain is mis-interpreting normal signals as pain. Either way your nervous system has turned on you and there's nothing you can do about it.

CRPS is incurable, and is very likely to be so for some quite considerable time. They don't actually understand how or why someone gets the condition. They don't understand how it works, so it stands to reason that any 'treatment' can realistically be little more than trial and error in the hope that something helps. I have a sneaky suspicion that CRPS sufferers are almost treated as guinea pigs for Doctors to try therapies on. Desperate for a cure they are willing to try anything no matter how invasive and regardless of whether it may actually make things worse. Hence the 'Holy Grail' title of this blog. In reality all that can be offered is palliative care, essentially trying to improve your quality of life.
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What makes the situation even more complicated is the fact that some things work for one person, reducing the pain and associated symptoms. May even get the person into remission. The very same treatment may have a reduced effect or absolutely no effect on someone else. Unfortunately I fall into the latter category in that nothing (TENS machines, nerve blocks, infusions) has really touched my CRPS. It was and has remained aggressive, having spread from the right foot to the left and moved upwards. It has also affected other areas which I won't disclose after a normal procedure which women have routinely. As I've said in a previous post my Pain Consultant has admitted that there is nothing more he can offer me. He did say he would fit me with a Spinal Cord Stimulator but was honest enough to say that he didn't think it would do anything and certainly couldn't guarantee it wouldn't make things worse. His opinion about the way forward, or rather lack has beeen confirmeed by two further distinguished Pain Consultants.

I am pragmatic enough to accept the lot that I've been given and do everything I can to make the most of life within the significant limits the condition places on me. That is not to say that I have given up, I will fight this thing till my dying day. However I refuse to submit myself to invasive, highly unpleasant or possibly experimental procedures which at best only have anecdotal evidence that they 'may' provide some additional relief. If and when a cure is found I will be the first in line believe me!!

Some reading this may think I'm absolutely mad. Why on earth am I not travelling anywhere and trying everything to try and find something to alleviate the terrible symptoms I suffer? Searching for a treatment that will take the pain away and give me my life back?

Perhaps it's the Physicist in me, or perhaps it's because I am a cynic at heart ? I don't know. What I can say is that I would rather live as I am than submit myself to something that could make me worse. The probability of success simply isn't high enough to risk it. Take a spinal cord stimulator as an example. An invasive procedure involving having wires attached to the spinal cord with a box which sends electrical pulses intended to interfere with the pain signals and block them. A TENS machine is an external version of the same thing to all intensive purposes. It did absolutely nothing, at any setting from lowest to highest. A nerve block (different way of going about the same thing) did absolutely nothing. Factor in the possiblility of something going wrong, the wire moving, my pain being made worse etc. It doesn't take a great leap to understand why I won't be going for it or similar procedures.

I take a large cocktail of drugs, many intended for other illnesses which work together to try and reduce the pain and swelling, increase blood flow, thin the blood, try to help me sleep, dampen the nerves, reduce the muscle spasms and so on. The full list reads as 40mg of slow release morphine taken every 12 hours, baclofen (used in the treatment of MS), clopidogrel, omeprazole, nifedipine, clonazepa, diclofenac, co-dydramol or co-codomol (codeine metabolises into morphine so gives a boost without the extra side-effects), amitriptyline, fluoexetine, quinine bisulphate, bisacodyl, lactulose.  It's like a jigsaw, all adding up to the best relief we can manage. I also take Milk Thistle and Acai Berry supplements to help my body cope with the drugs.

Having had CRPS for nearly six years, I know it all too well. The medication coupled with a whole host of strategies we have worked out over time serve to manage the condition as well as we can. By any normal measure of quality of life, mine is awful. The alternative is to constantly seek out new specialists and ever more obscure procedures in the hope one will help. I couldn't cope with all the waiting for appointments, the travelling involved in getting there (eg Bath), the stress and worry having whatever it is done, staying in hospital etc.

No, I shall continue as I am and wait for someone to find the Real Holy Grail for CRPS, namely a cure....