Physio, CRPS and archery....

As is the way with most of my blog posts these days, archery features prominently.Not surprising is it when you consider it is the only thing I now do and is the only reason I leave the house apart from hospital appointments and the occasional trip to Lakeside or a meal out every month or more like three?

Went to the long awaited physio appointment at the hospital yesterday with a Pain Specialist Physiotherapist, and it unsurprisingly proved to be a complete and utter waste of time. She could offer me nothing apart from get on with it. Of course we went under no illusions that it was going to be anything else, but human nature says that despite yourself (and believe me I am an utter realist about my situation) you can't help but have that little bit of hope. And that means that despite yourself, you feel upset when the stark reality of your situation is brought home yet again.

My broken nervous system means that my nerves are hypersensitive so my arms overreact to everything. Of course the usual stimuli that affect my legs so badly have the same effect in my arms. Tiny temperature changes register as unbearable by my nerves, normal air flow, the lightest of touches become a gale force wind and being whacked with a baseball bat respectively. The result is significantly increased pain, swelling and everything else that comes with CRPS. My legs sweat profusely as do my arms (especially when I'm shooting), my clothing and hair are always damp or wet because of it. My arms swell like my legs whenever I use them and archery only makes this even worse. Don't forget that I can't really use my legs other than to shuffle along for very short distances and only if supported by Eric. Not only do I want to use my arms for support which takes its toll, I want to do a sport that requires relaxation and solid technique in every part of the shot time after time over the course of several hours or more. With all the waiting around that comes with competition conditions.

The only positive that came of the appointment was that I do have a better understanding of just how much CRPS affects my archery. It is the reason why it takes my arms longer to get warmed up, why I can overheat really quickly and bizarrely how fast my arms get cold again. It is easy to see why shooting groups of three arrows at competitions is such a problem for me. Even the complete locking up of the left arm is due to CRPS, my nerves misfiring, exaggerating the effects of holding that arm out straight holding the bow. Relaxation through the draw is impossible when your arm is rigid, and you simply can't relax it no matter how hard you try. And believe me I've tried everything without success.

The worst thing is that CRPS doesn't need a stimulus to 'play up' to make archery all but impossible at times. My arms, like my legs simply have a mind of their own and I can do nothing about it. Other than try to force my uncooperative arms into a position that will let me shoot as I know I can. To get everything in line, release at the point where I'm floating over the gold. And then do it again and again. It's exhausting, which is why I've had to significantly improve my nutrition during a shoot. I now use fast release energy sachets together with hydration drinks which I consume continuously. It helps but it's something else to worry about.

Bottom line is that I've just got to carry on as I've been doing the last two years since my arms were affected. Pushing through the pain to maintain the range of movement I have yet balance this with the need to avoid a flare up. I'm on my own, battling with a condition that isn't understood, let alone has a cure, or even a recognised palliative care regime. You just have to get on with it and fight. It's so important to have something that you are good at. Mentally it gives me such an enormous boost when I shoot well. 

I have to accept that how well I perform in any given archery session is to a large extent completely out of my hands. Or even how this changes during a session. For someone with the high standards I demand of myself this will be really difficult. No, make that impossible....

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......

I will get a quicker appointment!

Phase two of 'operation get a quicker appointment' lurched into action last night, thanks in part to a suggestion from my wonderfully supportive Twitter family, that I get in touch with PALS at the hospital and see if they could help. It is so humbling that so many of you care about me, are always in my corner, ready to support me. Thanks to all of you, you know who you are!! I just hope I do the same back, I certainly try!

Now you know me, fighting is something I'm good at, so I fired off an email to PALS with 20 odd minutes to spare before they closed. I explained the situation and pasted in the letter I wrote to my GP. I asked them to read that and then contact me to discuss it. I'd never have got the point across on the phone!

Two superb things happened this morning. Unbeknownst to me Eric went into the GP's surgery on the way back from walking the dogs to see if he could find anything out. Apparently my GP had already written a letter yesterday afternoon and it had gone off in the post last night. We were flabbergasted, so quick! Unheard of for him, obviously he must actually have read it and felt compelled to act. Yes!!

Then I check my email and waiting is a secure message from the hospital. PALS had come through already, were really sorry to hear about the problem I was having. They had been in contact with the Pain team and I could expect to hear from them (the Pain team) today to arrange an earlier appointment. I was ecstatic, perhaps this was actually going to work out and I wouldn't have to wait that horrendously long time. Maybe Eric wasn't going to have to run up a huge phone bill to pester them, phoning up week on week to see if someone had cancelled. Yes!!

Unfortunately that's as good as it got. The Pain team haven't phoned me to arrange an appointment. I am not really any further forward than I was this time yesterday, which is.... well, let's just say it's 'frustrating'. I desperately fought to stay awake all afternoon waiting for the phone to ring, but to no avail. Let down again by those who are supposed to care and help again.

I have to hang onto the positives. The Consultant will get a hopefully forceful letter from my GP which should rouse a response. I am also hoping that the Pain Clinic have made an earlier appointment and sent it in the post, so fingers crossed it will arrive tomorrow. If nothing arrives in the post I will get back in touch with PALS, who in turn will hassle the Pain Team again. I know Eric will chase My GP to follow up and ensure there is a response from the Consultant. 

All is not lost, indeed I think the cards are stacked in our favour. Hopefully we won't need a phase three. We shall see....

Thanks for nothing Doc!

I wrote the following letter to my GP over the last few days in light of the fact that I was unable to see my Pain Consultant last week as he wasn't seeing patients. I have been struggling worse than ever for the last few months so was devastated when I couldn't see him. A new appointment came in the post for November 1st. This feels a lifetime away. Eric got in touch with the pain clinic in an attempt bring the appointment forward. He was unsuccessful, so I decided to explain the situation in a letter to my GP hoping that he would change my medication to try and give better relief until I see the Consultant in November. Here it is, with some of the detail removed to keep it shorter.

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Dear Dr ******

Unfortunately I was unable to see Dr ******* last Thursday (21/6/12) through no fault of my own, as he was unavailable due to personal reasons. His appointments were being covered by a Senior Nurse, which was of little use to me, so we had to postpone. I have had telephone appointments with the Senior Nurses before and they are unable to advise or discuss my case because of all the different medications and the severity of my CRPS. Instead they just advise that I need to see Dr *******.

I had a letter through the post yesterday, and the replacement appointment isn't until 1st November. I was particularly keen to see him as I have been struggling particularly badly with the pain in recent months. As you know I recently upped my Morphine from 40mg to 50mg but saw no reduction in pain. I would classify 'normal' pain levels to be an 8 on a scale of 1-10.  Doing anything elevates this to completely off the scale.

I simply can't carry on as I am for another 4 months or more. We must try and tweak or add to the medication I take as I am finding it particularly hard to cope with. Doing the smallest thing results in a major flare in my legs and it takes ever longer to recover. My quality of life is even worse which is saying something. I desperately need your help to try and improve this with the hope that I can recover a little quicker or not suffer as badly. I can't walk in the normal sense anymore. All I can do is slowly shuffle, my feet in constant contact with the ground, a few inches at a time, either pulling myself along using grab rails or more usually shuffling along with Eric, our arms around each other. I need to be supported constantly and with each movement the pain worsens. I would be completely unable to cover a fraction of the distance from the front door of your surgery to the door of your room. Unsupported I couldn't move more than a couple of steps without the pain being totally unbearable. Added to this is the fact that my balance is appalling, were it not for Eric helping me get up, move etc I would fall on a regular basis. Kneeling and bending down are impossible.

What follows I hope gives a feel of what life is like, and how CRPS affects me every day. I never have a good day, it is more a case of how bad the day is. Also, why I am so desperate for any extra relief you can give me? Why the thought of waiting till November to see Dr ****** is so terrifying.

[Snipped: example of how going out to Lakeside Shooping Centre affects me] 

The only activities I do now are

1. Going to Lakeside as discussed above
2. Doing some gardening for a short period (one to one and a half hours). Again I am in my wheelchair with legs elevated. We have raised vegetable beds which I can access. Everythign is done by my upper body, leaning across sideways to do anything. The payback from this is worse than going to lakeside.
3. Doing exercise using the Wii games console. I can do this sitting in my chair with legs up. Obviously I have to do things that don't need you to move about or stand up, but give an aerobic workout. I have found that 15 minutes is the most I can do without having a major flare up. Realistically if I manage to do this three times a week I'm doing well.
4. Having a bath. I include this because it impacts on the pain and other symptoms and is something else that I have to recover from. The temperature and movement of the water exacerbates the pain. Being dried is torture. At present I manage one bath a week. 
5. Archery - done in the back garden. Done irregularly. Have to have legs down which limits the amount of time I can do this significantly.
6. Going to watch speedway at Arena Essex. Utter madness this, I really shouldn't even attempt this any more but it has become something of a 'line in the sand' that CRPS will not take from me. It has taken so much else. By some considerable distance this is the worst activity I can do and can take me nigh on a week to recover from it fully.
7. Reading, Sudoku, using iPad, playing video games, watching TV make up the rest of what I do. Essentially anything that can be done sitting in my chair.

Apart from typically one trip out each week my entire life is spent confined to my reclining chair with a duvet over my legs. I cannot get myself up, and now use a commode permanently to urinate. Eric pulls this over to my chair, helps me up, gets me onto it and then back again. 

[Snipped: getting up the stairs to have a bath] 

I am unable to do anything for myself, being unable to stand unsupported for more than a minute or so. Doing anything whilst standing is impossible, so if I need anything I have to ask Eric to get it for me. 

Life is a battle. Getting through each day is a success, doing anything a challenge and done knowing the consequences. Everything will be worse no matter how small the activity.

Both lower legs from and including the knee downwards remain affected by CRPS. The main areas that really concern me are:

• Swelling of feet and ankles - remains horrendous but my right foot has caused particular concern recently. Extremely purple and swollen, to the point where I feel as if the skin is likely to burst. The pressure is awful and the ankle locks completely. Blood flow when you press the toe is slow in returning. The foot may be either boiling hot or freezing cold. The hypersensitivity makes it extremely difficult to counter this.

• Burning pains/on fire - this ia a constant issue even when the feet are like blocks of ice. The front of both legs constantly 'ripple' with waves of pain varying in intensity from extremely hot with severe pins and needles to a feeling that they are actually on fire. Anything touching the legs, such a part of the duvet exacerbates this making it impossible to get the legs comfortable. If my legs are down this problem intensifies rapidly. The legs become increasingly mottled and a deeper purple colour. 

• Ankle and feet - Both feet along with the swelling are ridiculously hypersensitive to temperature, even the slightest air flow. Even the slightest touch causes me me to cry out in agony. All of the toes are turned over and my right foot in particular is turned inwards because of the swelling around the ankle. I live with constant stabbing pains through the top and sides of each foot and ankle. The nails are extremely brittle and grow extremely slowly. The slightest movement of the foot increases the pain so I do my best to keep them in as comfortable a position as possible. There is still good movement in the ankle, if pushed by someone else the feet move well, I just can't do anything with them myself because of the pain. When my legs are down, the feet become increasingly purple, with similar pain to the front of my legs. The stabbing pains get worse.

• Knees - both extremely swollen, the left being worse as that is the one that is bent when going up and down stairs. I get stabbing pains on the inside of the knee on both sides. The duvet touches these constantly which is extremely uncomfortable. I can't put any weight through either knee, getting up from a chair for example involve me pushing on the arms of the chair whilst Eric pulls me up. I cannot get up unaided. I also need help using the bath lift, with Eric having to lift each leg onto a stool first and then into the water. I support myself constantly with grab rails.

• Exhaustion - this is an ongoing problem. I am completely unable to stay awake for large periods, sometimes losing an entire day to 'on and off' sleep if I have been out or done something. Each period of sleep doesn't last long as the pain breaks through, and I generally feel worse on waking than I did before. Severe headaches, extremely painful eyes (feel as if something is stuck through them, together with severe pain at the back of the eye) are a constant issue.

Anything you could suggest to help combat the above would be very welcome, or perhaps upping the dose of existing medications to see if that helps? I had a couple of specific queries I  was going to make when I saw Dr *********, but I wonder if you could act on these. At present I have nothing that I can take which would give an instant pain killing effect. I need this desperately, especially for when I get home. I would only anticipate using this as a last resort.

[Snipped: suggested medications which may help me and improve the pain relief] 

Many thanks for taking the time to read this Dr *****, I felt it important to give you a better overview of how I am in writing than Eric can when he comes to see you. I would be so grateful if you would prescribe the above and/or tweak the doses of the other drugs I take. Any relief would be more than welcome. I simply can't carry on as I am until November. Current medication list follows. I take everything all the time. Indeed if I miss any the consequences are grave.

Yours sincerely,

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Eric went to see my GP this morning and came home thoroughly unimpressed. The GP at best only skim read my letter, didn't make any suggestions and didn't even mention my medication. He just said he would o to the Consultant sending a copy of my letter with it and asking for an earlier appointment. Bearing in mind that he wrote to the Consultant well over a month ago about medication and got no answer, we aren't holding our breath.

So where does that leave me, and how do I feel about it all? 

I am faced with a long wait until November, managing as best I can in the meantime. I feel extremely let down by my GP who yet aagain shows that he doesn't care at all. I can't believe he didn't suggest any changes to my medication or even mention them at all! Caring profession? I think not!!

The inability to be able

By nature I like things to be neat and tidy. I'm by no means fanatical about it, but if I see a pile of papers, or  a load of clutter I want to sort it out. Throw any unnecessary stuff away or put it out to be recycled. I can't stand not being able to get to something or being unable to use something because there is a load of 'stuff' cluttering it up. 

Unfortunately for me, Eric is the complete opposite. He is a hoarder by nature, hates housework and is more than happy to have piles of stuff here, there and everywhere. He tends to just leave stuff lying around, items we've bought stay in their carrier bags rather than being put away. The kitchen was always one of the worst areas, as he never seems to put anything away after using it. Periodically I would completely blitz an area, throwing stuff out, cleaning and generally de-cluttering it. In between I would do my best to keep things tidy but it always seemed to be a losing battle. 

Now, pre CRPS this wasn't a huge problem because I could do something about it. Now I can do nothing except watch the clutter build up and the place become more and more untidy. I have forced myself to ignore it as the years have gone on, only too aware of what Eric has on his plate just caring for me. Me complaining about the state of the place isn't going to help him when he feels overwhelmed with everything he needs to do anyway. There is no way I can help him much as I'd love to. Let me take the kitchen as an example. The distance to the kitchen from my chair isn't far but it may as well be miles away when walking is so difficult and painful. I simply can't get that far, even if Eric wraps his arms round me and we shuffle along together. I have a walking frame but no matter how hard I push down with my arms it doesn't give enough support. How then can I tidy, dust or put things away when my arms are constantly used to hold me up? Especially as the pain increases exponentially the longer I'm standing? The house is too small to use my wheelchair to get around, it only just squeezes through the door between the living room and the kitchen. I can't reach the work surfaces and having to have my legs up makes it even more  difficult.

This blog post was prompted today because I let my frustrations overcome me. I wanted to go in the garden, something that sounds a quick and easy task but in reality takes ages. Eric has to move stuff around in the kitchen before he can open both patio doors. The wheelchair itself always has stuff piled on it, which has to be moved somewhere else, usually onto another pile. Other bits and bobs get shuffled around. Once uncovered he then has to find and put the leg rests on, get my fleecy thing, manoeuvre the wheelchair into the living room. In the meantime I am sitting in my chair waiting, feeling more and more frustrated that it is taking so long. These feelings are only compounded by the fact that the path in the garden is cluttered with various tubs, buckets and piles of weeds making it harder to move around or get near the railway sleepers that form the edge of our raised beds. I inevitably sit outside waiting whilst Eric gets things organised out there for me as well. Toys out of playpen moment... said I wouldn't go outside because of the hassle.

My frustration isn't aimed at Eric, it is entirely to do with my inability to just get up and do things as I once did. Everything seems to take forever, when of course, the reality is, that it is only a few minutes. It is totally unfair on him, because he does everything he possibly can to make life as good as it can be for me. No, my frustration is squarely aimed at myself because I simply cannot bear being so useless, unable to do anything to help. I hate the fact that he has to waste his time moving things and getting me organised to go in the garden. I would much rather he spent the time doing something he enjoys. He still hasn't seriously tried the camera I bought him for his birthday, which was at the end of April. Much as I hate it the nature of the beast is that everything I do has to be brought to me or done from afar, such as using the computer. That isn't very helpful when tidying etc involves you moving things, putting them away and so on. 

It is made all the worse because Eric is so wonderful, never complains and ignores my frustrations. As he is the only person I see and speak to for days, a week, if not longer sometimes, he bears the brunt of any frustrations I may be feeling. I try desperately hard not to lash out, but sometimes you just can't help yourself. 

Postscript..

Did go in the garden after all. Eric insisted as he always does when I've been stupid about something. Thank you Eric xx

What would I do without him?

Get the balance right...

The title of a Depeche Mode song and very appropriate for the CRPS sufferer. Previously I've talked about the idea of spoons representing the amount of energy we have. Everything we do uses up some spoons and if we try to do something 'big' (not by normal standards) then we completely run out of spoons and grind to a halt. Here I tackle something I am bad at, seriously bad. Pacing..

It seems pretty obvious that my focus should be on doing anything and everything to minimise the pain, swelling, exhaustion and everything else that goes with having CRPS. This is where pacing comes in. Commonsense says that you should always try and do something for a time or at an intensity that doesn't produce too large a backlash in terms of punishment. Easy you'd think?

Well for someone like me, who never did anything by halves before I got CRPS, it is all but impossible. I was never happy unless I'd flogged myself to death in the gym, swum more lengths in the pool than the last time, bettered my lowest score on the golf course, won every match I played in whichever sport I was competing. You get the idea. I have long accepted that all of these things are now impossible, but it hit me this week that I still haven't and am probably incapable of ever accepting the severe limitations the condition forces onto me on a daily basis. Let me try and explain..

It is now six and a half years since I got CRPS and I can honestly say I still have no idea where the safety limits are, just how much or how long I can do things for before I get payback. This is in large part because I can now do so little of anything, however trivial, before my condition flares. It is however more to do with the fact that if I actually did a 'safe' amount it really wouldn't be worth bothering at all. If I say that just getting dressed and out to the car leaves me feel horrendous, and that is before we go anywhere, you get the idea what I mean. Similarly having a bath. Getting upstairs, having the bath, being dried, getting back downstairs leaves me struggling badly with increased pain and swelling. Have a bath every day? Not a hope. 

The bizarre thing is that it isn't just physical activity that makes me worse. I did absolutely nothing a couple of days ago except play a video game for a couple of hours, read a magazine, tweeted a bit. On waking from my afternoon nap I felt absolutely terrible, pain worse, feeling lousy in myself. My right foot also swelled alarmingly and was a severe purple colour.  How could what I did make me so bad? It is truly ridiculous, you couldn't make it up! This sums up my life. Imagine if your life involved you doing so little each and every day, yet still you felt worse and were punished constantly. This is how I am forced to live every single day. 

It perhaps seems more understandable why I kill mysef going to speedway. Since the season started it has been an uphill battle to recover from the effects of one meeting before the next one. The punishment has been brutal, long lasting and rendered me incapable of doing anything except sit and wait it out. Now that's fine because although it is something so extreme and madness to even attempt it, I do so because I love it and it is as I have said before 'my line in the sand', something I will continue to do despite what CRPS throws at me. 

I have tried to pace myself loads of times but in all honesty it doesn't work for me. I love doing 'exercise' on my Nintendo Wii. Now in the past I would have played for an hour or more and then spent the next couple of days paying for it. Instead I recently decided to try again to find a sensible amount that I could do without it having an adverse effect. Turns out that I can only manage 15 minutes at the most. Hardly seems worth the effort. Similarly I tried to limit the time I spent in the garden but again this meant I got very little done. I combined this limited time doing something with lots of rest in the hope of finding a more bearable pain level etc. Very quickly I found myself feeling bored, fed up and more worryingly down. It was affecting my outlook on life, bringing me down. You'd have thought I would feel better in myself, not worse?

Turns out I simply can't cope with being sensible and pacing myself properly. I don't mind suffering increased pain, swelling and everything else, no matter how bad, if I feel that what I did was worth it. Doing so little yet still feeling grim isn't for me. The way forward, and it isn't for everyone, is to do more of something than I should, regardless of what I do. At the end of the day I have to look after the mental as well as physical side of me. If that means I have to suffer more then so be it. 

Pacing? What pacing....

Pills, pills and more pills!

For the vast majority of people medication is something you take briefly when you're ill. You go to the Doctor, tell him/her your symptoms, you get a prescription, take the course and go back to normal. How would you feel if the tablets didn't work? Irritated perhaps? Chances are you'd go back to your GP, get a second course or something different. One way or another you get better and carry on as before. What if your symptoms don't go? Regardless of how many courses or how many different medications are tried. How would you feel then? What about if your symptoms get worse and worse, or flare up badly and there is nothing you can take to calm things down?

If you would, put yourself in my shoes. I take a cocktail of around fourteen different medications each day, and not one of them have, nor will ever make me better. CRPS is incurable, palliative care is all you get and isn't great as they simply don't know enough about it to have a tried and tested treatment plan. Approaches differ wildly from Consultant to Consultant and can become seriously invasive should you choose to go down that route. The sad fact however is that the best you can hope for is some relief from the various symptoms it throws at you. I can say that because mentally I have accepted my situation, the reality of living with a condition you wouldn't wish on your worst enemy. Accepted that sometimes it's better to stay with the status quo than increase the dose of something or continue to take something that isn't doing anything in the hope that it will. Or opting for a surgical approach with no guarantee of improvement and which may even make things worse. Quality of life is paramount for me.

That's not to say of course that if something new came along that they could reasonably guarantee would make a difference I wouldn't try it. Of course I would. Nor am I saying that I have lost all hope that something will improve my symptoms and hence make life more bearable. All I'm saying is that I no longer feel the desperation of 'right, that didn't work, what can we try next?'. Trying anything and everything regardless of the side-effects or additional trauma that may come with it. Or even make you worse than you were before. Desperation is too strong a word to use, but it is the inability to accept you have to live as best you can, there isn't a miracle cure around the corner.  Don't forget I am into my seventh year of living with CRPS, so the postcard, tee shirt etc. were purchased long ago. I know that I'm lucky to be mentally strong enough to take the pragmatic approach I do. There are so many who aren't and can't. 

The mainstay of 'treatment' for CRPS, like many other chronic conditions I assume, are drugs taken daily, often at several different times. In total I take 34 tablets each day. It's like a military operation to be honest. I have five separate alarms on my phone each reminding us that another batch of tablets is due. Then there is another lot to take just before bed. I get sick and tired of it, but it is the only way to ensure that the tablets are onboard doing what they should. Missing some by an hour or so causes extra pain etc, but with something like MST (slow release Morphine, stays in the system 24 hours a day) missing a tablet has huge repercussions. It is therefore absolutely vital that I'm never sick. It happened once and meant the MST wasn't absorbed. I couldn't take another one so had to carry on with a major part of my pain defence taken away. As the day went on I deteriorated to the point that I was unable to move even slightly, relax my legs or sleep. It took a good couple of days to get back to my normal pain levels. So yet another drug was added to stop nausea and vomiting in its tracks as and when I need it. Thank goodness it works a treat. This raises a wider issue, the need to take even more drugs to combat the problems caused by others. These include drugs to support the liver and stomach, drugs to help alleviate morphine induced constipation. It is a never ending treadmill that you simply can't get off.

So why so many, surely you just need painkillers? 

I wish!  A cocktail is quickly built up because there are so many different symptoms to try and combat. Remember CRPS is caused when the sympathetic nervous system goes wrong so the nerves fire pain signals which are false or the brain misinterprets normal signals as pain (the jury is out!). Also the affected areas are hypersensitive to the smallest stimulus producing pain totally out of proportion with what you'd expect. You also have to contend with cramping, burning pains, Stabbing pains, twitching, purpling (because the blood doesn't flow so well to the extremities - flight or fight efffect where the sympathetic nervous system responds by increasing blood flow to the major organs), horrendous swelling, depression, wildly differing temperature changes. The list goes on, but hopefully you see what I mean. It's not a simple job finding the right combination of drugs to give the best relief. Trial and error basically, with drugs coming from a bewildering array of other areas of medicine that seem totally unrelated to CRPS. 

There are generalisations in terms of the type of drugs prescribed to help with the symptoms of CRPS. I do not claim to have any medical knowledge but can only share my experiences of the types of drug I've tried, discussed or am currently taking. I do however have a working knowledge of how every drug I take works. Won't take it unless I know what it does. The cocktail of drugs Any CRPS sufferer takes more than likely includes some from some or all of the following families:

Painkillers (analgesics, opiates) - 

I went through the weaker analgesic drugs (aspirin etc) without any benefit at all. They do their best to block pain signals but didn't have a hope. Opiates (codeine, tramadol, morphine etc) unsurprisingly have been most effective for me, because they act to lower the intensity of  nerve transmissions between the spinal cord and the brain. Slow release Morphine (MST) has proved the best of the ones I've tried, without having unbearable side effects, topped up with either co-dydramol or co-codamol four times a day. The codeine in them metabolises to morphine so effectively giving a little boost every 6 hours. Or when the pain is particularly bad.

NSAIDs (non-steroidal anti-inflammatory drugs) - 

These help a little with the swelling and also are known to provide some pain relief as well.  They don't do much, but anything is better than nothing. I take Diclofenac because it is easier on the stomach when taken long term. I did try a course of water tablets which very quickly reduced the swelling. Unfortunately this increased both the hypersensitivity and the pain so they fell by the wayside.

Anticonvulsants

These two groups are normally used in the treatment of seizures but they have also proved effective in treating nerve pain. Pregablin and Gabapentin seem to be the most common ones prescribed for CRPS. Pregablin did a reasonable job of deadening the nerves for me, which in turn reduced the pain in it's various forms. Unfortunately it was causing damage to my liver so it had to go. One step forward, two steps back as they say. Gabapentin wasn't nearly as effective so we had to try something else. 

I now take Baclofen, used for MS, which is doing quite a good job. It is a muscle relaxer and antispastic drug which treats muscle spasms, pain and stiffness. It was a bit of a shot in the dark by my Pain Consultant and just goes to show how inventive they have to be. Where we go from here if they stop being as effective I have no idea. Such is the way with CRPS drug treatment. There aren't a stockpile of different drugs to try, you get to the end of the road surprisingly quickly and have to come to terms with the fact that you are going to have to live with the relief you can get. 

Benzodiazepines (Diazepam, Clonazepam, Lorazepam are examples)

These work by changing the way messages are sent to certain parts of the brain. The result is a calming effect on various functions of the brain, making brain cells less excitable. It is easy to see how this benefits the CRPS sufferer, being used to treat anxiety, sleeping disorders and the like. I take clonazepam which has certainly helped me in the evening and through the night with twitching, sleeping problems.

Tricyclic antidepressants 

These days not widely used as antidepressants because other drugs are more effective. A happy coincidence for the CRPS sufferer is that they have been shown to help with nerve pain. They work by regulating serotonin and noradrenaline in the brain. How this helps with pain I'm not sure, but it wouldn't seem a huge leap of faith to see that reducing depression would allow the body to cope more easily with the pain. I also find they increase the length of time I manage to sleep during the night. I take 100mg of Amitriptyline each evening at 9.30pm. To get 2-3 hours of unbroken sleep a couple of times a night between my bedtime (12pm - 1am) and the first drug alarm at 6am is heaven. It's the little things that make all the difference.

Antidepressants

Yet another family of drugs vital to many CRPS sufferers including myself. They work by increasing the levels of neurotransmitters in the brain such as serotonin. They also found to disrupt pain signals between the nerves and the brain. Providing a dual function of helping you cope with the trauma and hopelessness living with CRPS can cause together with more pain relief make these extremely useful. 

Circulation Aids (Clopidogrel, Nifedipine)

Both of the above help the circulation in different ways. Clopidogrel acts on platelets in the blood, effectively making them less sticky. The result is that the blood doesn't clot as easily and so it's flow rate improves. It is usually given to people who have either had strokes or are at risk of having one. This was the first medication they put me on when I was released from hospital and I've remained on it to this day. Nifedipine is a calcium channel blocker which relaxes the heart muscle and blood vessels and is usually given to people with high blood pressure or angina. It acts to improve blood flow to the extremities and was diagnosed by my GP because it helps with 'burning foot' syndrome. Neither of these medications are typical for CRPS, but bearing in mind that my right foot went ischemic when my CRPS started, it makes sense to take ongoing precautions to prevent it happening again. Although they cause me so much grief I would prefer to keep them.

... and finally the Support Team

it is an unfortunate side effect of taking powerful drugs, that you also end up taking extra medications to either eliminate or at least minimise problems they cause. Omeprazole supports the stomach, various medications combat morphine induced constipation (bisacodyl, lactulose or similar). I also take milk thistle as an ongoing supplement to support my liver as well as acai berry which is a good anti-oxidant. 

I had to start taking Serc on a permanent basis in the last six months. It contains betahistine and is typically used to relieve problems in the inner ear. Fluid in the inner ear gives the brain information about our position. Changes in pressure for example can cause nausea, dizziness and a sensation that the world is spinning. I suffer this constantly, no doubt in part due to the other drugs I take but also because I am not very active. Just something else to deal with.

The big problem with medication is that it's so hit and miss. A drug that provides some relief for one person will do absolutely nothing for someone else. A drug may work brilliantly but the side effects are so extreme that taking it becomes untenable. Upping the dose doesn't guarantee an improvement in dealing with the symptoms. Blindly increasing the dose of a medication to it's maximum, without taking account of how your body retracts to it seems nonsensical to me. Another golden rule is never increase, add or change more than one drug at a time. My Consultant is adamant about this and I agree. Any Science experiment will only have one variable factor. If you change more than one thing at a time you have no idea what is helping, making it worse, causing side effects etc. 

It does bother me when I hear that someone is actively working towards reaching the highest dose of a drug or drugs. Increasing the dose may actually make things worse. Remember earlier I mentioned quality of life? Let me give an example of what I mean by more isn't always better. Recently, as an attempt to combat the brutal effects of going to speedway were having on me, we opted to increase my MST from 40mg every 12 hours to 50mg. I was desperate to try and find a little extra relief, no matter how small. Over the course of the following week I battled through the increased side effects hoping that it would be worthwhile because the pain relief would improve. Sadly it made no difference to my pain but in myself I felt worse. There was no point in taking the higher dose, so I spent the next week battling through the withdrawal to get back to where I was before.

I suppose my underlying message throughout this post is that trying to minimise or relieve the symptoms of CRPS is a tricky business with no set pattern and wildly varying degrees of success. I will deal with other approaches such as Mirror therapy and spinal cord stimulators in my next post. That's another can of worms entirely....

So much harder than I could ever have thought

So has going to Speedway been as bad as I feared?

In my last post I talked about what I go through to enjoy my passion for Speedway. So far I have been to three speedway meetings. The last one was particularly frustrating as the weather that day had been the classic 'will it won't it be rained off'. We decided to go for it as reports from the track were that they hadn't had a huge amount of rain. Unfortunately we were at the track when they decided to cancel it because of the weather just thirty minutes before the start time. So although I saw nothing, I still had to suffer the 'payback'.

It has been so much harder than in previous years. The pain increases far more during the meeting to the point that it breaks through my enjoyment, as much as I try to ignore it. Which goes to show how bad it is, because I'm loving the speedway so much. Shout myself hoarse I do! I have always lightly rested my programme board on my knee. Was amazed to find that it is now too painful. I placed a fleecy blanket over the knee. Yep, still painful. It must sound crazy to anyone reading this. If it hadn't happened in both meetings I wouldn't believe it myself! 

By the time we get back to the car I can't move my legs at all. Getting me out of the wheelchair is torture. Putting my legs down hurts like hell. I then have to deal with the shooting, stabbing pains going through my feet as I place them on the ground. Getting out of the chair and into the car involves Eric pushing me up, whilst I push on the right arm of the chair and pull myself up with my left arm. It is a real struggle and excruciatingly painful. I spend the minimum amount of time standing, instead collapse onto the car seat. Eric has to lift the fleecy cosy and swing my legs into the car, whilst I use my arms to twist the rest of me around. No way I can do it myself. 

The journey home provides yet more torture. There is no optimum speed anymore, every speed sends waves of burning pain running up and down my legs, every bump escalating the pain further. I can't feel my legs, all there is is pain. It is very disconcerting not being able to tell where your legs and feet are. Hard to describe but the best analogy I can think of is walking a dog when it's foggy. You know he's not far away but for the life of you, it's impossible to place him. I sit there doing my best not to think about my legs, but fail miserably. A journey of about 20 minutes feels like a lifetime. All I want is get back to the comfort of my chair, get the shoes and socks off that my feet detest so much. I've gone so far beyond the point where I can cope.

For the first time ever Eric had to get a neighbour to come and help get me from the car into the house. Having swung my legs round, I was unable to put my feet on the ground at all without feeling as if there was a stake being hammered through them. It's a horrible place to be mentally. All you want to do is get inside but equally making yourself move even slightly is so hard. You're stuck between a rock and a hard place. Every tiny movement will be unbearable, but the longer you take the harder and more painful it becomes. Definitely a case of mind over matter. Between the two of them they got me to my feet and we shuffled incredibly slowly towards the first of the half steps that lead into the house. Hands safely on the bars, Eric lifts my left leg onto the step. I pull myself up. One down two to go. Still being supported I shuffle forward to the next step. Again Eric lifts my leg onto the step. I pull myself up but the toe of my right shoe gets caught on the edge of the step. I'm stuck, can't do anything about it. Hannah, knowing no better grabs my foot and puts it onto the step. The pain, oh God, the pain! Just as well the bars were there supporting me because I just slumped sideways onto the right handrail, screaming in agony. To be honest the rest is a blur. 

Finally I am back in my chair, with a hot cup of tea and Bella lying across my lap, licking me. I am always guaranteed a wonderful welcome by all the dogs but Bella and I share a very special bond. She spends the vast majority of her time lying across my lap and is a huge comfort. She has an uncanny way of missing my legs when she jumps on and off or when she's on my lap. Whenever I've been out she spends ages licking me, wagging her tail. Hates it when I go out, regardless of the fact that it's a rare occurrence. Looks thoroughly miserable, bless her. Life is all the better having her in my life. Especially when I'm feeling at my worst.

Over the course of the next few days I sit in my chair slowly coming back to life with pain levels gradually reducing to their 'normal' levels. The first morning is awful. I wake up and everything hurts, well that's how it feels. Sea of pain where my legs should be. Eyes bloodshot and very painful, vision blurred. First tablets at 6am and then it's a case of sitting there in the hope that I improve. No chance! The weekend is lost to sleep and when I'm not sleeping I can do nothing but sit and fester. Can't even read to try and take my mind off the pain. Only time I get up is to use the commode. The amount of heat that pumps off my legs is astonishing, or bizarrely they may be freezing cold. One thing is for sure, CRPS throws everything it can at me, punishment for daring to go out and watch the sport I love. It is normally Tuesday when my pain levels return to anything like their normal levels. And then of course the process of preparing for the next one begins. Wednesday provides the only window of opportunity to go out, escape the prison cell that is my chair in the living room.

As there were three meetings on the trot (including the abortive one) it became increasingly difficult to recover to the point that I simply didn't manage it at all. Every day as bad as the one before. No going out, no tiny bits of exercise. Life has just been about trying to be in the best condition to go to speedway again. My CRPS has flared to the extreme. It is only now some two and a half weeks after the last meeting that it is settling. I would have written this blog post weeks ago but it was absolutely impossible. I did try to increase my slow relief morphine from 40mg to 50mg in the hope it would help. As it made little, if any difference to my pain levels I am reverting back. Senseless to take something with the extra side-effects if it isn't helping.

As I sit finishing this post, it is Tuesday. There is a speedway meeting this Friday, followed by two others in succession. I know what to expect now, but it won't stop me. My determination to go to each meeting remains as solid as ever. CRPS will just have to do it's worst. 

I must be totally bonkers?

Well in just less than a week I will be going to my first Lakeside Hammers speedway meeting of the season. It will be the start of my seventh season, and I am proud to say that I have missed no more than half a dozen meetings in all that time. Speedway is my 'line in the sand', the one thing I refuse to let CRPS stop me doing, despite the inevitable cost that comes with it.

My view of the track, before it gets busy!

It has become increasingly difficult year on year, yet still I refuse to give in. I can't wait to get to that first meeting and all the others. I absolutely love speedway, be it the excitement and adrenaline rush that comes with watching four riders going hell for leather around the track (with no brakes), the smell (other speedway fans will know exactly what I mean!), the roar of the bikes, the highs and lows as your riders pass others or are passed themselves. Each race lasts less than 60 seconds, yet so much can happen. There is also the banter with friends, predicting the outcome of each race, cheering the riders on.
I do however have to admit that a large part of me is also dreading it.

It's difficult to put into words just how bad I feel, and how exponential the increase in pain and swelling are both during and after a meeting. It takes me at least 3-4 days of complete rest to even vaguely get back to my 'normal' pain and swelling levels. If there is a meeting the following week I then spend the remaining days desperately trying to get myself in the best shape I can for the upcoming meeting. If there are further consecutive meetings the effects are compounded, I have no chance to recover, let alone prepare myself for the next meeting. It's a downward spiral. Last season, there were meetings throughout August for example. By the time I'd gone to the last one, I was well and truly destroyed. It took a good couple of weeks to get back to anything like my normal CRPS levels. By anyone's standards it's utter madness, but still I put myself through it. Like everything else we do what we can to keep me as comfortable as possible in a vain attempt to minimise the damage.

First there is preparing for the meeting. Hammers' meetings are on a Friday, so from Wednesday morning I do nothing that will take anything out of me. Any thoughts of going in the garden, having a bath, doing my 15 minutes of exercise on the Wii or any other trivial activities by normal standards. I only get out of my chair to sit on the commode. I am even more limited than normal, only allowed to read, watch TV and do puzzles. Oh and my normal session playing a video game whilst Eric walks the dogs first thing. It is incredibly boring but a necessary evil. Thoroughly enforced by Eric, who as always does his best to save me from myself.

All set for the action!

On the day of the meeting I try and sleep as much as CRPS will let me, do even less if it's possible and wait impatiently for the evening to come. Unfortunately everything involved in getting ready to go out is an ordeal. The nightmare that is getting dressed, with Eric doing his best not to catch my feet as he puts my socks on etc. I always become really naggy because I really can't cope with it. Then there is the painful and very slow shuffle to get me out to the car. I now wear my fleecy leg cosy in the car as it helps to minimise the effects of the vibrations from the road. By the time I'm in the car I'm exhausted, naggy and in lots of pain. That's before we start the engine! Usual battle to find the best speed for my legs as we drive the 15 miles or so to Arena. I feel for poor Eric who has to drive at exactly a particular speed which reduces the pain. The speed is never constant, it varies from day to day and even from one road surface to another. He just gets us home as soon as possible after the meeting as no speed will be better, they are all murder. Of course my pain intensity and type has steadily got worse as I have to sit with my legs down in the car.

Once at Arena, mission 'get Jane settled' begins. Eric gets my electric wheelchair organised, pulls me up out of the car and into the chair. Legs up and off we go. Anyone who has been to Arena Essex would agree that the facilities aren't great. It's essentially a banked area surrounding the track. No seating, people either stand or bring their own chair. To get to my viewing position I have to trundle over a sandy, bumpy area under the stand. I used to get dragged backwards by Eric as it was the only way to get me across. Now I can toddle on my own, but it's still a bit of a rollercoaster ride. Once at my usual spot, metal posts go in the ground, to support my legs and prevent me rolling off down the hill. I then manoeuvre onto bits of paving slabs and that's me in position for the rest of the evening. For obvious reasons, I can't move during the meeting, go to the toilet etc. We also have to ask people if they would move over slightly because I can't see through them. Eric, who hates speedway, sits next to me and reads a book throughout the meeting. He is oblivious to everything going on around him.

Can you see me? Go up vertically from the red helmet.

As far as is possible I am in the most comfortable position. Even so, my legs worsen as the night goes on, I'm wearing shoes etc which my legs hate. It's invariably chilly, a nightmare for the CRPS sufferer. My wheelchair is nowhere near as supportive as my chair at home. To a large extent I can 'ignore' the pain because I'm so engrossed by the meeting. Well for some of the time anyway. It is at the end of the meeting when my punishment truly begins. I can't describe the pain involved in putting my legs down, getting me up and back into the car. I do my best not to cry out, but you just can't help yourself. The journey home is horrific, every bump inducing even more pain, every time Eric brakes makes me feel worse. All I can feel is pain, not a chance of keeping my mind off it now. I honestly don't know how Eric gets me back in the house. I can't put any weight on my right foot, it feels as if it has been staked to the ground. My left isn't much better and my knees are unbearable. Every shuffle makes it worse. By now I am so worse for wear that all I want is to get back into the comfort of my chair, get the clothes that are torturing me off, and try to sleep to escape it all. No matter how wrecked I feel, I don't regret putting myself through it because I got to watch the sport I love. Oh and putting two fingers up to CRPS as well is always a bonus!

Sleep is usually in fits and starts, broken because of the pain. On waking in the morning I feel as if I've been hit by a bus. Can't function at all, just sit in a bubble of pain and exhaustion. First lot of tablets on board, barely notice a difference. The recovery begins. I am completely unable to do anything other than sit and fester. Eric has a devil of a job getting me up to sit on the commode. If I'm lucky my eyes will only be very bloodshot and feel as if there is something stuck through them. At worst I can't move my head for the pain, have to wear sunglasses because they can't tolerate light. Heat pumps out of me in waves, that's one of the downsides of pain. It goes without saying that my legs are totally off the scale. Often I can't actually tell where they are, there is just a fog of pain. Can't do anything other than sit and try to watch TV. Over the course of the next few days I gradually improve, albeit really slowly. Hopefully in time for me to do something like go in the garden, go shopping before the next meeting. The reality is that during the season my life revolves around each meeting. Literally.

So, having read the above, am I bonkers? Probably, but will it stop me? What do you think?