Archery, CRPS and me...

I keep a journal in which (amongst other things) I write about each archery session or competition I shoot. Things such as how it went, what went well, what I could do better. I thought it might be interesting to post one such entry on here. It might give an insight of the benefits and frustrations of trying to do something the best you can when you have a chronic condition which makes doing even the simplest thing really difficult and most things impossible.
So here it is... 

Archery today - shot Portsmouth, scoring 528

“Focus on what you’re doing not the target” or “don’t think, just shoot” are definitely the mantras I need to focus on I think if I am going to shoot at my best all the time. There is absolutely no reason why every arrow shouldn’t score nine or ten. I have the technique, it’s my head that’s letting me down. A 2 for pity’s sake, where on earth did that come from? 

As soon as I think about it I become tentative, not “squeezing’ the shot on release but somehow trying to guide it in. A bit like lifting your head on a golf shot, something I trained myself not to do. Of course the former keeps the power on and in-line, the latter can mean slight angles creep in which makes the difference between the gold or worse. It comes down to anxiety/fear of failure/self-applied pressure of not getting the arrow in the gold every time. That is what I expect of myself for a Portsmouth (or a WA 18m to be honest). If I can chill out a bit more things will be much easier!!!

To a certain extent I suppose guiding it in has crept into my shooting because of my arms. When everything is stiff and range of movement is rubbish I literally do have to do what I can to get the arrows to that all important yellow bit of the target. Just getting to full draw and holding it there is hard enough, let alone going that little bit further. 

The good thing is that I really feel my release is better, more consistent. As my coaches always gently reminds, ‘just try and pull that elbow back that little bit before release’. I can tell the difference as the arrow comes off the bow. I love that felling when you know it’s a great shot without looking at the target. Not much beats that if I’m honest.

I know that I should be proud of what I am scoring, and I am….yes really. Doubting it even as I type it!! Useless Mrs P!!  It’s great to be as good as I am considering I shoot with a really basic setup compared to those I shoot against, a 28 pound 64” bow, and extremely unorthodox body position by anyone’s imagination! It would be very interesting to see how others would do if they sat in my wheelchair and shot as I have to!! Perhaps I should challenge someone…. 

I suppose I’m frustrated that my body ALWAYS lets me down, to varying degrees. When my arms don’t want to play ball at all it’s not so bad. It’s the rounds where I’m shooting really well, but then just can’t keep it going. Be it pain, stiffness, locked up left arm, getting cold or just plain exhaustion I always seem to go through a bad patch part way through, or it drops away at the end. I’m disabled so I shouldn’t expect so much of myself? Nope, it just doesn’t work like that. Well not for me anyway. I get this glimpse of what I could do if I was an able-bodied archer and then it’s snatched away.

Me, shooting outdoors

I can’t and won’t give up. I will continue to improve and shoot better scores if it kills me. Archery gives me the chance to be ‘me’, the competitive, driven person I was before that fateful day in December 2005. The day CRPS got me. There isn’t anything else in my life that comes close to giving me the buzz archery does.

I’ve just read through what I've written and realised I haven’t even considered the effects of recent days.  The day before yesterday I couldn’t even keep water down. Such were the side effects of an ongoing attempt to increase the dosage of a new drug we were trying to move over to, which we hoped would improve my pain relief (see my last blog post for details).

It didn’t and my body demonstrated it’s utter disgust by reacting so violently. Yesterday I managed to eat toast and a bit of soup. My pain control is worse until I can get back to the 50mg slow release Morphine that did a better job than I had ever imagined. I’m nowhere near a 100%. It’ll take a month or so to get back to where I was. Common sense says 'What am I like’ to even try and shoot a complete round today? 

Hmmm... anyone who knows me or reads my blog knows that I don’t do common sense! 

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....

In reflective mood...

Racketts Worcester Competition - Scored 240  (Format: two targets, one high, one low)

2nd in session. Won club team bronze medal overall

Wow, what a day. When Eric phoned this morning having walked the dogs to tell me the car wouldn’t start I was devastated. I’d looked forward to this competition for ages, didn’t do the Frostbite yesterday and now couldn’t shoot today? No…

It all turned out ok though as the breakdown guy got us going and we made it.

I shot really well on the first target, having had to adjust the sight a fair bit after the sighters and first couple of ends. Was shooting well though, lots of 5s, great rhythm, felt relaxed. That was on the lower target, scored 129 for the first 3 dozen. They had a board of scores as we were going along. I was first at one point and there was only ever 2 points between me and the other lady on that first target.

The higher target was always going to be a worry for me, having not been able to practice two targets at the Saturday session which was cancelled. It was a nightmare as I just couldn’t get up there with any accuracy at all. With no sighters I spent some time adjusting the sight, then just had to focus on my technique and try to improve. Was chuffed with the 5s I managed, especially the 3 in the final end. Only managed 111 on the upper target, which was the best I could manage. Gave it everything.

What can I say? I did my best, and just wasn’t prepared to shoot a target so high. I can’t replicate that at home, but will have to find a way of doing better. Who knows what score I could have achieved. Where I could have come? I don't know where I came overall yet as the results haven't come out.

My results in the first three competitions have shown the standard that I am is far better than I thought I was, especially given the way I have to shoot. Whilst archery gives me so much, it is a great sadness that I will never be able to see how good I can be. CRPS yet again holds me back. I know I should be grateful to have achieved what I have in the three competition shoots I’ve done and it will hopefully just get better the more of them I shoot. I am, really I am. I am so lucky to have found a sport again that I love and also helps retain range of movement in my arms.

BUT, and it is a big but, it has also shown me that were I able to really focus, train and push myself harder the potential is there to do and achieve so much more. My coaches have said they feel I have the ability to become a para archer but that can never happen. Firstly CRPS doesn’t qualify under the rules of classification for para archers so I can never be one anyway. Worse though is the fact that I can’t travel more than about 20 miles to shoot in competitions, can’t shoot more than a couple of times a week because it wipes me out so much, nor do any other training which would help me do better. I have to nurse my arms along as best I can, with some days being unable to get to full draw let alone anything else. 

Whilst I have the motivation, attitude, technique and application (my coaches' words not mine) there is that ever present barrier that I have no way of getting over. Or around. It saddens me, but more it annoys the hell out of me. I hadn’t achieved what I wanted to in golf before it was taken from me. Highlights included two hole-in-ones, representing Essex Ladies, getting down to a 5.3 handicap, winning numerous competitions including the Scratch County Handicap Trophy, set a one over par course record on my home course. I was nigh on unbeatable in matchplay (that determination again). I only got to play for three or so years before CRPS struck. It is still sticking the boot in now.

All I can do is keep plugging away, keep entering competitions, shooting when I can and the best I can. If having CRPS has taught me anything it is to go for it, because you never know when you might lose that thing you love. My body might continue to let me down (I sometimes wonder which bit will go wrong next) but it won’t bring me down. I do hate losing after all….

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....

The nightmare that is cold weather

Anyone who follows my blog will already know about the wildly different pain types I have to deal with, together with the hypersensitivity in my lower legs because of CRPS. Temperature wise my feet in particular literally have a mind of their own, swinging from freezing cold to boiling hot and anything in between. They can flip from one extreme to the other in seconds. Conversely they can remain stubbornly like ice cubes for a day or more. Or they are so hot I can't bear to have them covered, and have to resort to having wet towels draped over them in an attempt to make them a little more bearable. To give an idea of how hot, the towel will be warm within minutes, and have to be replaced several times before the pain becomes a little more bearable. Even so they remain horribly hot. Then of course there is the increased swelling, leaving me feeling as if the skin is too tight and could burst. They're like this normally, so imagine what they're like when the weather becomes as cold as it is now?

Normal people will add an extra layer to help them warm up. A thicker pair of socks perhaps, or a hot water bottle. It is unbelievably difficult for me to counter cold weather as my legs won't tolerate having socks on, let alone hot water bottles or the other usual ways of warming yourself up. They react badly enough when I go out (very infrequently) where I am forced to wear shoes and socks, and of course trousers.

Normal items of clothing for most but items of torture for me. We do our best to lessen the increase in pain, swelling and so on. It is nigh on impossible. I wear jogging type trousers with very wide legs. My socks come from Cosyfeet, a specialist shoe and sock outlet who supply extra large, extra soft and non-elastic socks. I used to get my shoes from them as well. They make far wider shoes which open wider and have Velcro fittings. Even these became unbearable so we had to search for an alternative. We finally found a very soft slipper, which opens completely so Eric can guide it onto my foot without it touching. As a bonus they have memory foam insoles, which help when I have my legs up in the wheelchair. I have one pair of trousers, one pair of slippers and two pairs of socks. That's it. No lavish wardrobe for me, I wear the same thing every time I leave the house. You find something that works  even slightly better and you cling onto to it for dear life. Mustn't forget the other vital piece of equipment, my blue fleecy leg covering, which cocoons my legs and provides an extra barrier to the elements.

Every minute I'm dressed CRPS reacts.. badly. My feet swell, the pain increases, the skin in contact with the clothes becomes itchy. No, not itchy, more like little needles digging into your leg and feet. I desperately want to scratch but of course I can't, want to get the clothes off, but of course I can't. I know that my legs will be going more and more purple, blotchy, sweaty and there is nothing I can do about it. The closer the contact the greater the effect. You want to get home, get these demonic pieces of clothing off, get back under the duvet in my chair. And this when the weather is good. Going out in the snow is a total no-no. Reading this back I wonder how on earth I go to speedway meetings? I must be mad, but it has become the line in the sand for me. CRPS will not take this last pleasure away from me. Well not as long as there is still fight in me.

The problems don't get easier at home. Here I wear nothing other than knickers on my lower body. The rest is cocooned in my duvet, better called a comfort blanket. It isn't perfect but it does provide the best solution we can manage. Any effect of adding clothing is grossly magnified, which is in itself odd? I can only think that the effect is accelerated because of the warmth of the duvet compared to what are really just thin clothes. Who knows? The upshot is that I have to 'sit and bear it', waiting for my feet to warm up, cool down. For the stabbing pains to lessen, the burning sensation to decrease a little. More often than not and especially when there is very cold weather outside my patience remains unrewarded as my legs continue to do what they want and never seem to give me a break.

As a final thought, when you complain about the snow, having to scrape the car windscreen, or being inconvenienced in other ways, spare as thought for those, like myself. We don't have the option to go out, being rendered completely housebound, at the mercy of the elements. I would give anytning to be able to come and go as I used to. Sadly for me that is never going to happen now or in the future.

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....

My four legged carer

I thought it was about time I wrote about Bella, my wonderful Border Collie. I have had a dog in my life since I was seven years old, but Bella is something else. We got her back in July 2004 as a pup, as a retirement present for Eric who managed to get early retirement and escape teaching. Of course that didn't pan out as we'd hoped with me getting CRPS a year and a half later. Six months later we went back to Wales to get another Border Collie puppy, Kayla. She was to become completely bonded to Eric whilst Bella became totally and utterly bonded to me.

We played rough and tumble, fetch, went on walks. Did all the things you do with a puppy, training etc etc. Then everything changed for her. Firstly I was in hospital for several days, which she didn't react well to. Then when I was back at home I was different. Gone was the mistress she knew, that took her for walks, played with her in our active and boisterous way. Instead mistress was confined to the sofa, and later a reclining chair, couldn't move much and was just different.

Bella, avoiding my legs as is the norm

From that moment on, she has adapted to my situation and as near as damn it, become my four legged carer. She is never far from me, indeed the vast majority of the time she lies across my lap in my reclining chair. She is incredibly protective, has a canny knack for not touching my legs either when she is lying on me or when she jumps up or gets off. I can ask her to turn round as necessary and she is always incredibly careful and gentle. We now play with her lying on me, or she stands with her front paws on the arm of my chair and her back paws on the arm of the sofa. We still manage fetch and when I do occasionally get out on a walk with them she absolutely loves it.

What really makes her special is the way she regulates me. Sounds unbelievable but she does. A typical example is when I do some gardening. She will come out with me initially with me but then goes back in the house. She will then come out again a bit later to see me and again returns to the house. Nothing unusual there. A bit later however she comes out and refuses to go back in. She just stands next to the wheelchair looking at me. It is almost as if she's saying 'right that's enough, time to stop now'. She impatiently waits whilst Eric helps me back into the house and out of the wheelchair. Once I'm back in my chair, I get thoroughly licked. She reacts the same way when I play tennis on my PS3. She toddles off upstairs as soon as I start, but again she will come down as if saying 'enough now, time to stop'.

When I go upstairs (as little as possible as I have to drag myself up there) she always comes with me. Our stairs have a landing halfway up. From wherever she is, she will get up and goes and stands on this landing. She waits there for me until I get there, then she goes up to the top landing. Again she waits for me. She then waits for me to get back to the stairs. Only then does she go down. The only time she goes down without me is when I have gone up to have a bath. Every other time the routine is the same.

Bella gives me so much love, encouragement and protection. She is an exceptional dog, and I simply don't know what I'd do without her.

A real achievement!

Our raised beds which let me grow vegetables

Well it's taken me three or four sessions, but I have managed to clear the old plants, weed and replant our vegetable patch. It's such a sense of achievement because I can only do a small amount at a time, but I've plugged away and got there.

I've added these pictures to show what our disabled friendly raised beds look like together with the long concrete path that runs the length of the garden. Without these I wouldn't be able to do anything, it gets me outside for some welcome relief from the living room as well as some fresh air.

Gardening may be rewarding but it's also incredibly frustrating. Of course I'm confined to my wheelchair with my legs up. This immediately causes problems because I can only position myself sideways against the sleepers. Any digging I do is with a trowel like tool with a long handle attached. My upper body has to do all the work, and I have to lean across the sleepers to do any weeding, planting or pruning.

 I never seem to quite manage to get myself in the right position, the wheelchair often refuses to move because the front wheels are so close to the sleepers and get stuck. I also have a problem with the lever that allows me to raise or lower the leg rests. In my efforts to get as close as possible to the bed, this catches on the sleeper and so the leg rest drops. This is really painful and extremely annoying. I find it difficult to raise it again myself so Eric has to come to my rescue. Indeed without lots of support from Eric I wouldn't manage to do anything in the garden, despite it being adapted.

I have lost count of the number of times that I've got myself settled only to find that the tool I want to use is out of reach, or at the other end of the bed. I either have to manoeuvre to get it and then re-position myself again or ask Eric to get it for me. It can be absolutely soul destroying and their are many times when I get so fed up with it that I wonder why I bother at all. I feel so guilty because poor Eric has to keep bringing me things, filling the watering can, emptying my weeding bucket etc. It is impossible for me to get in and out of the garden unaided, indeed I need significant help just to get into the wheelchair!  There is so little that I can get myself or put away, the onus is very much on Eric to tidy up after I've done. Yet again it burdens him with doing even more for me. He never complains bless him, and as always he does all he can to help me.

The above sounds quite negative. It isn't meant to be, I am just trying to explain what doing some gardening involves for me. It is so difficult to express in words how hard it is for me to do gardening. As with everything else it's a military operation and it always makes my legs far worse and me utterly exhausted.

I get punished as usual but am happy to accept this because of the pleasure gardening gives me. It is nice to be able to do something normal albeit in a rather abnormal way.

Kai, an update

I mentioned in a previous post how I felt that CRPS was ruining my getting to know Kai, and my ability to do things with him. As with everything it was borne out of the frustration that comes with having CRPS. Everything is harder and it's more difficult to get involved when you are confined to a chair in the living room. I am so grateful for the support of Eric who as always did all he could to help me do more with him. It is some time since that post so I feel it's time for an update.

What am I missing?

Things have moved on tenfold. We've worked really hard on me doing things with Kai so that he got to know me better. As a result he now comes over to me across the corridor frequently, looking for a cuddle or to play. He wags his tail at me, something he wasn't doing. He jumps up at the side of the chair asking to come up. He lets me groom him easily without wriggling as much. We play rough and tumble on my lap. Or tug with one of his toys. In essence doing a lot of the things that I wasn't managing to. In the last couple of days I've been training him to come to the side of my chair, stand on a small wooden box we've put next to it and then put his paws on the arm of the chair so it's much easier for me to pick him up. If he does it right he gets a treat. Working really well and means I have a way of getting him to come up should I need to when Eric is out. He picks things up so fast!

A particular delight for me was when we came home last week after leaving them all for the second time. Normally it is Eric going out and coming back, so gets a lovely welcome from Kai. This time we'd both been out and I was the first one through the door. The other two came dashing through wagging their tails, jumping up etc. I always make sure I'm holding on to my grab rail tightly, as it's so difficult to greet them whilst maintaining my balance. That's why Eric stays behind me to keep me steady. Kai was jumping up and down, wagging his tail like mad trying to get to me to say hello.  The exact same reaction he gives to Eric when he comes in. It was wonderful to see him so pleased to see me. Without thinking I picked him up and was licked like mad with his tail wagging like mad. Just as well Eric was behind me because of course I immediately fell backwards, couldn't grab onto anything to support myself and had to be rescued. Nonetheless it was one of those wonderfully spontaneous moments you get so much pleasure from.

Our wheelchair friendly vegetable garden

Possibly the funniest time I've had with Kai was when I was in the garden earlier this week. We have raised beds so that I can reach to garden. I was doing some weeding and turning the soil over. Kai Had been lifted into the bed and decided he was going to chase my 'spade' (it's more like a large trowel with a long handle). Huge fun was had as I moved it backwards and forwards with him pouncing on it every time it landed. Lots of woofs and play poses. I can't remember the last time I've laughed so much. Absolutely priceless and so lovely to be able to play with him in a normal way for once. His beard was absolutely black by the time we'd finished!!

Yesterday proved just how good a bond we have developed. I was in a really bad way with stabbing pains in my eyes, awful headache and was sick several times. I was sat forward in my chair, Bella had disappeared as she can't cope with me being sick. Little Kai came over and asked to come up. He sat on my lap absolutely still with his head rested on my stomach looking up at me. I then went to sleep with him snuggled in the crook of my left arm and Bella in her customary position lying across me. They were still there when I woke up. Now that's what I call being looked after.

As I write this, Kai, who was lying on the bed rolled over and fell off! Thankfully his bed was there for him to land on. There's certainly never a dull moment with him around, and I'm sure that all three of my wonderful dogs help me cope better with CRPS. I may be stuck in this chair but boy do they keep me cheerful....

Second class citizens?

We went out shopping at the local large shopping centre on Wednesday and it prompted me to write about the widely different ways in which people act towards me. Some are lovely and give you that warm feeling you get when something unexpected and nice happens. The contrast is when people don't even acknowledge your existence, ignore you at best or actively try to avoid having to get anywhere near you. Or stare at you as if you're a circus exhibit or something. Let me give some examples.

Whenever we go out, which isn't often, I use my mototrised wheelchair with my legs elevated at 90° as usual. We lose track of the number of times that people walk straight in front of us as if we don't exist, wthout an apology or even a look in our direction. Then you get the people who stand in the way and make no attempt to move despite your calls of 'Excuse us please'. The most annoying are those who leap into a lift and then don't wait for you to get into it, often when you were the first ones there in the first place. You can see them frantically pushing the button so that the lift will go and they won't have to share a lift with a disabled person. God forbid!!

Shops who insist on having all sorts of gumph in the aisles are another example of how whelchair users' access is completely ignored despite legislation setting out what they should do. It is hard enough to get around shops at the best of times especially when I am twice as long as a normal wheelchair. Having baskets of stuff, or pointless displays stuck everywhere makes it even harder. I've lost count of the number of times Eric has had to move things and even then it's a very tight squeeze. Robert Dyas, W H Smith, Game, The Works and the vast majority of clothes shops I'm pointing at you!! Really looking forward to the Xmas period as you can imagine! Is it any wonder that the vast majority of things I buy are online? Why should I have to do that just because I have CRPS and in a wheelchair?

Then there's trying to queue and pay for things. The barriers they use are impossible to navigate, the counters are out of reach and now we have chip and pin it is even harder because you can't reach the machine to key your number in. If Eric wasn't with me I'd be completely unable to shop. He pays for everything apart from the occasional accessible counter. I did have a really lovely experience in Primark. They have a disabled till at the end so you don't have to queue. The woman who served me was lovely, put the card in for me, made the effort to move the machine so I could put my PIN in (most don't). She then came round from behind the counter and put the bag on the back of my wheelchair. The exception to the norm but it really made me feel like an ordinary shopper just for once. Like everything else going shopping could be an incredibly frustrating experience, but we do our best to make sure it isn't.

Contrast this with the people who offer help when I cry out in pain getting in or out of the car. Or those who move out of the way so that you can get through without having to stop, will hold doors open, pass you things from a shelf you can't reach. Carry things to a table for you. Those shop assistants that go out of their way to make sure you're happy. Such simple acts of kindness but mean the world to someone who cannot go about life as they used to. You also get lovely people who will not only just pass by, but will smile, say 'hello' and even stop and chat to you (usually having a dog around helps this). I always make a point of thanking them profusely because their small act of kindness makes me feel good about myself. Hopefully by making a point of thanking them they will feel good about themselves as well.

It wasn't until I became disabled that I realised just where we sit in society. The world is not made for the disabled person. I wouldn't expect it to be completely as we are a minority group. However my experiences over the last six years show that there is great deal that needs to be done before we can have anything like a similar experience to able-bodied people. From transport to shop layout, the world is an obstacle course, and one that isn't getting any easier. There are so many things that I cannot access, should I want to. I cannot join an archery club anywhere locally because they have no wheelchair archers and the regimented way that they shoot means that I simply can't keep up. And of course that is before I take into account other issues caused by the CRPS which makes doing anything more difficult. I applied for Archery tickets at the Paralympics next year and was lucky enough to get them. Assuming I will be up to going, which we won't be able to tell until the day, it will be interesting to see just how disabled friendly the venue will be. Should be brilliant you'd have thought? I won't be holding my breath.

My final thought goes to those thoughtful, wonderful people who make our lives easier. Sometimes in the smallest of ways. I salute you and thank you for your kindness.

Grinding to a halt

This is the second post taken from the blog I started in late 2009 but gave up on. This entry is particularly pertinent to how I have been feeling since Friday (it is now Sunday) when I went on our puppy, Kai's first walk. See here for details. I knew what it would do to me, but went ahead anyway. It shows how little the punishment has changed between then and now.

Originally written Sunday, 29 November 2009  
I have just had one of those days that I'm sure many with similar chronic conditions can relate to. Namely a day when you simply are unable to do anything at all except sit and hopefully sleep. The pain is just too bad, to the point that not only are you boiling hot, sweaty but you also feel sick and can't even watch television.

Punishment of this kind is suffered all too regularly in my case, because I will insist on trying to do things. By things I mean read magazines, play tennis for a bit on my Wii, go out to the shops and similar pursuits. By any normal sandard these are trivial things, and certainly the length of time I can manage is to be honest pathetic to pre-CRPS activity.

I guess it's all about quality of life. You choose to suffer the punishment for the slightly better quality of life. When starting from such a low base it is totally worth it in my eyes. I would go completely bonkers if I kept to the level of activity that I can actually cope with. Argubly this would mean no life at all anyway....

Staying Positive.... how?

I was looking at the notes feature that Facebook has started and came across entries for a blog I started in late 2009 but gave up on, probably because it was just too difficult mentally. 
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
 
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.

How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.

It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
 
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.

There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.

I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.

So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.

The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.

So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.

Something else it's ruined...

Why does CRPS manage to ruin everything or at least do it's best to? Physically and mentally. It seems to pervade every aspect of life, spoiling it, taking some of the pleasure you get. You'd think after nearly six years I'd be used to not living a normal life. Well anything even vaguely representing normal life in my case. Never in a million years would I have thought this would include our new puppy. But it has. It has been quite some time since I've felt down about something. But I am feeling really down about Kai. It seems so irrational as I type this but it's how I feel.

I'll try and put how I feel into words. I was so looking forward to getting Kai home, our little bundle of fun that we could play with, teach to sit, lie down, stay, come when called, and all those other things you do with a new puppy. Take them outside to do their business, take them to the Vet for their first set of jabs, feed them. Every new experience shared, relished and enjoyed. Most importantly developing that bond with him that will last a lifetime.

But of course CRPS has put the dampeners on that. I'm stuck in my chair all day, every day, apart from getting up to have a bath, go to the toilet. We've had him just over three weeks and I haven't left the house since he arrived. He's still too young to be left, and there isn't a strong enough bond with the girls yet to trust them with him alone. I can't feed him, I can't feed myself for heaven's sake! I can't carry him outside first thing in the morning to do his business. All I can do is shout Good Boy! from afar. I can play with him on my lap, playing tug with his toy, but I can't teach him to play fetch, can't sit on the floor and roll a ball to him. Can't go out in the garden, can't even see him toddling about, exploring what's out there.

I sit in my chair and watch him follow Eric around, grab at his trousers, ask to get on the sofa with him. See him whining, sitting at the bottom of the stairs because he and Kayla have gone upstairs and he can't follow them. Or cry when Eric goes out, even if it's only to get the milk in or answer the door.
See him come running when Eric calls him, be it across the living room or from the bottom of the garden. He loves to sleep next to Eric on the sofa, or on his lap, playing with Kayla and so on.

Compared to Eric I'm boring I suppose. I just sit here, and when I do get up Kai is put on a chair because he tries to chew my toes which of course is a complete no-no. At the start he was quite happy to snuggle up with me and Bella and sleep. Now however he doesn't seem to want to do that at all. He's off after Eric or sitting on the sofa or his bed. If I'm going to do anything with him I either have to wait until he presents himself at the side of the chair so that I can pick him up or Eric has to physically pick him up and give him to me. I can call him till I'm blue in the face and he won't come to me.

I'm out of reach, inaccessible. The only time he comes across to me from the sofa via 'the corridor' is if Eric and Kayla have got off the sofa. 'The corridor' is the pile of puzzle books I have on a table wedged between the sofa and my chair. Kai toddles over that to get to me so that I will put him down. He generally doesn't settle, but instead wriggles or wanders down to my feet where he looks to try and get off. If I'm lucky he'll settle and sleep briefly there but then of course he's resting on my feet which is really painful. Why does he want to sit on me when he can go and have fun elsewhere!

This does paint a gloomy picture. There are of course lovely moments. Because he can't go out for his walk yet he is left at home. I then have him all to myself. He sleeps, I groom him whilst he wriggles like mad, we play tug with his fluffy duck or other toy. That will soon come to an end though, something I'm dreading. As soon as they all come home he wants to get down and greet Eric and Kayla. He wags his tail like mad when he sees Eric and gives him a big kiss. He's bonding brilliantly with him.

I don't mind admitting that I'm jealous. Not of Eric or the way Kai is with him. I think it's wonderful. I get so much joy from seeing how much he loves Kai, running around after him, playing with him, talking to him. I'm jealous that this wretched disease is robbing me of the same enjoyment, the same experiences. When he starts going out for walks I fear I will have virtually no interaction with him. I can't go out on their walks, just something else I can't do.

I love Kai to pieces, I just wish CRPS would let me enjoy him....

A weighty problem!

Something I haven't touched on in this blog as yet is weight. It is a battle that I fight alongside CRPS itself. Bit of context first as always.

I have never been thin. You would probably have described me as stocky pre-CRPS. I am a smidgeon over five foot and have the sort of metabolism that means if I look at a cake I'll put on weight. Because I was into sport, the gym etc I was able to keep the weight down. I also had a lot of muscle because of the sport so as I say, stocky pretty much covers it.

The huge snag however is that I have always had a complex about my weight, always thinking I was fat, looked huge. You get the idea. My poor husband had a running battle getting me to eat. I would rarely have breakfast, and would probably skip lunch so essentially mainly ate in the evening. I was forever starving myself in an attempt to lose a bit of weight. It's a psychological problem I've had from a very young age, partly because of my mother (there's a whole book I could write about her!!), happily never to the point that I would become anorexic, but it's been ever-present. I have always beaten myself up over my weight and what I eat. I have always hated how I looked.

Imagine how I must feel now? I can hardly walk so no exercise opportunity there. I have a motorised wheelchair as it's the only way I can realistically get around with a semblance of independence. It is incredibly difficult to push yourself in a normal wheelchair with your legs elevated to 90° to my upper body. I hate being pushed and love the speed I can go! Only chance I get of moving quickly these days. The vast majority of time I am sitting in my reclining chair.

I manage to do a little bit of gardening thanks to the raised beds we had created in the garden a couple of years ago. I can't get out there regularly because the punishment is severe and it's incredibly frustrating anyway. Everything has to be brought too me because of the legs. I can never reach, and of course I'm sideways on which makes things even more 'interesting'. Equally, going out, say to the Lakeside shopping centre, wipes me out so I lose days trying to recover. Speedway leaves me wiped out for days. What I can do when is dictated by CRPS, so what on earth can I do to not put on huge amounts of weight?

The obvious thing is my diet. Well if I starved myself before imagine what I'm like now? Eric is driven to distraction as I refuse to eat anything more than a 1oz bowl of bran/cornflakes for breakfast and dinner. He buys other stuff to tempt me into variety but gets nowhere if I'm honest. I then have a small tea, often leaving some despite the fact I have a small portion anyway. I would estimate that I eat between 1000-1200 calories maximum a day. At this point I can almost hear Eric saying 'not even that many!'. Sorry my love...

My bloody-mindedness comes to the fore once more, I refuse to eat anything I consider I shouldn't and if I do have a treat (like pudding or a cake) I will beat myself up about it. Makes life even more exciting as you can appreciate. We visited a dietician very early on, and she was more than happy with what I was eating, even said I should probably be eating more. Yep I ignored that last bit! Of course the condition doesn't help either. I have horrendous swelling in both legs. All the muscle I had has gone in my legs because they don't really ever bear weight. It is the upper body that does all the work. As a result I have 'bulked up' in my upper body making me larger there too. I used to suffer horrendous pain in my arms, shoulders and lower back. Nearly 6 years later and my upper body can pretty much cope with anything I throw at it. I have no idea what I weigh as I couldn't get onto scales and stand there anyway. I have put weight on, obviously, but not a huge amount.

So the only other thing left is exercise. Remember I loved exercising, so it is a double blow that I am now so totally limited. I do some archery but that isn't really exercise in the true sense. Well bot to me anyway. I have one of those feet peddling things which I use with my arms. Trouble with that is that of course it is resting over my upper legs so makes my legs worse. The only other thing I have found is to 'play tennis' on the PS3 using the Move controller. I thoroughly enjoy this as of course I used to play tennis pre-CRPS. Bear in mind I am doing this sitting in my reclining chair as always with my legs up. My legs aren't involved at all. It is all upper body. So why on earth then does it completely bugger up my legs? God forbid I can actually have some fun and not be punished for it!

I have to say that over the years I have slowly come to terms with my situation and the fact that there isn't really anything more I can do about my weight than I am already doing. That has been a huge mental step, although I would be lying if I said I hadn't lapsed numerous times. I still fundamentally hate the size I am, it is still a struggle not to beat myself up constantly. As Eric and others tell me, all things considered I am doing extremely well with my weight. I'm not enormous, I can still wear the shirts etc that I wore pre-CRPS. It is only trousers, socks and shoes that have increased, and that is because of the swelling. Eric is a fantastic cook so it would be all to easy to eat loads of his lovely food, especially his cakes which are to die for! I don't and will continue to fight it. I will also continue to try and do some exercise as and when CRPS lets me, not just because of my weight, but also because it is so fantastic to actually do some exercise. I get such pleasure from waving my arms around hitting an imaginary ball, it's the closest I'll ever get to playing tennis again. It's incredibly frustrating not being able to do more. A lot of the time I do some even though I know I shouldn't. That won't come as a surprise though will it?

A final thought -  about my stupid GP. I have a borderline thyroid problem so we do a blood test every three months to see if it has worsened. After the recent one he called me in. I don't generally go into the Doctor because it is one of those cases where the ordeal simply isn't worth the effort. We assumed it was because the thyroid was causing more of a problem and we needed to start medication. No it was to tell me that my cholesterol is a little elevated! His answer - eat less. I did my best to tell him that I eat very little anyway and have a healthy diet. No, I just had to eat less. He went as far as saying that he didn't care what I ate, just eat less of it. He also rambled on about how I could end up needing a hoist in years to come blah blah blah.

I was devastated, upset and very angry. Just how insensitive had he been? Absolutely no allowance made for my condition and what I'm up against. Just the same advice he would give to anyone else. Of course mentally it re-enforced the demons that are never far away. It shows I still dwell on it because I'm writing about it here.

Just another example of how the medical profession is ignorant about my illness.

It's going to be a very long Winter

My feet, as you will know, are both riddled with CRPS and have a mind of their own at the best of times. They can go from freezing cold to boiling hot at whim, regardless of the weather. However it is the Winter that I really struggle. The hypersensitivity caused by the CRPS means that any small change in temperature has a response which is completely out of proportion.

Bella's usually lying on me in some way or other.

As I sit writing this I am sitting as normal in my reclining chair with my legs up. I have already gone up one thickness of duvet. This goes over the top of my legs and underneath so that my lower legs are completely covered. No air can get in. I also have an additional lightweight fleece blanket laid over my feet and a 'slanket' over the top of that.

Despite all of these layers both feet and ankles feel like blocks of ice and have done continuously for at least the last 24 hours if not longer. The stimulus? I touched our laminate flooring when standing up. They are incredibly painful, to the point of screaming and when I get up (only to sit on the commode - just another concession I've made to this illness) they feel brittle. So brittle that it's a surprise that they don't just shatter. I shuffle even more slowly, turning is harder and my chances of falling are greater. I rely even more on Eric to help me move. A distance of no more than a few feet. It's pathetic by any definition of normal living.

Of course it doesn't help that I'm not wearing socks, nor trousers or slippers. It would seem the obvious thing to do. However none of those is an option because they would be in direct contact and so exacerbate the pain. We have to be careful with how heavy the layers we add on top are because any part of the duvet touching toes etc increases the pain. Too much weight means too much contact and so more pain. I just have to sit it out in the hope that eventually some warmth will permeate and they warm up. People have suggested hot water bottles, which of course would be natural thing to try. We have - we wrapped the hot water bottle in several pillowcases then I rested my heels on it. It was unbearably hot. To Eric it didn't even feel warm. This is what I'm up against.

Of course the slightest stimulus such as them becoming exposed to the air, or slightly touching the floor is enough to send them back to being ice cubes again. It's an absolute nightmare. Going out obviously has the same effect. It is a running battle from now onwards. They are particularly bad already, which sadly means that as the title says, it's going to be a very long winter.....

Last one.. for this season

CRPS does it's best to stop you doing anything and everything. From something as simple as having a bath, to going out, say to the shops. Everything I do has to be planned, in fact leaving the house to go anywhere is like a military operation. Every part is an ordeal, from being helped out of my chair, being helped to get dressed, shuffling out to the car, being helped into the car, the added pain that comes from having my legs down/vibrations from the car, being helped from the car into my electric wheelchair.... you get the picture. Without the constant support from my husband the house, no actually, the living room would be a prison. Even long standing appointments have to go by the wayside if I simply don't feel up to all that it involves. Spontaneity is not a word that applies to my life anymore. You literally have to force yourself to do things in the knowledge that you will pay for it tomorrow, the day after or even the day after that.

I talked, in my last post about adding new things into my life after I got CRPS. As time has gone on some of these have fallen by the wayside, simply because the benefit or pleasure gained is not worth the pain and the payback. I keep talking about 'payback' but what does that actually mean for a CRPS sufferer?

My payback varies in intensity depending on what I've done but there is no escaping it. Minor payback is characterised by increased pain in my legs and feet, a little more swelling. I will also feel tired and mildly 'punch drunk'. This typically lasts for the rest of the day after I've done something such as have a bath or go out really briefly, say for a dental appointment.

At worst the pain is so bad that I don't know what to do with myself, the exhaustion is such that I literally have no control over whether I'm awake or not and I feel so unwell that I can do nothing other than sit in the chair and wait it out. I can't even read. Concentration is impossible. My head throbs, I feel as if I have a thick fog around my head, stabbing pains in my eyes, which also become very bloodshot. Oh, and the swelling increases to the point where my skin feels too tight. Typically we're looking at 2-3 days of this before I start to feel 'better', i.e. when the pain, exhaustion, swelling etc return to 'normal' levels

You can now probably understand why there is the constant weighing up going on in my mind about whether what I am going to do is worth what will inevitably come later. Experience plays a large part. I know if I go to the local shopping centre, Lakeside I will be incapable of doing much for the rest of the day or the next. I was never able to go food shopping before I got my electric wheelchair but this again causes lengthy payback so it is not a regular thing. I no longer go anywhere to do archery, preferring to do it in the back garden, because I don't have the added ordeals of getting dressed, travelling there and back and so on.
 
I also need to plan ahead in an attempt to minimise the payback. Say we're going to try and go shopping on Wednesday. I will endeavour to do as little as possible the day before, so that I feel 'at my best' (or rather my interpretation of) on the morning of my trip out. Of course it doesn't help a lot and it is just as well I'm a bloody-minded, cantankerous wotsit and do things anyway otherwise I really wouldn't leave the house. Which brings me to the title of this post. 'Last one.. for this season'. What am I talking about?

In a word..... Speedway.

My view of the Speedway track

A friend took me along very early on in my CRPS days. He'd said to me about going several times pre-CRPS but I'd never take him up on it. After all there was so much else in my life. Now however there was nothing to stop me. We went to Press & Practice at Arena Essex, where the Arena Essex (now Lakeside) Hammers ride from March through to October. It wasn't a proper meeting, it was more about blowing away the cobwebs and getting ready for the new season. I loved it! The smell, the roar of the bikes, the speed, everything. I then went to my first meeting and it was fantastic. Four riders going hell for leather for four laps. A heat lasts less than a minute but it seems so much longer. So much can happen in 60 seconds, it's like a game of chess. The rider in front trying second guess the chasing riders to maintain the lead. For those chasing it's a case of trying other lines, trying to force a mistake. Did I mention they have no brakes? It takes a hell of a lot of bottle to go at speeds of up to about 80mph with little protection apart from a set of Kevlars and some body armour underneath.

My thirst for speedway isn't limited to watching th Lakeside Hammers in action live at Arena Essex. I also watch Elite League  and Grand Prix Speedway on Sky Sports, Polish Extraliga, Swedish Elitserien and Allsvenkan Speedway meetings streamed live on the Internet. Plus any other meetings I can find. It has become an integral part of my life, an absolute passion. I can't imagine life without Speedway, the Winter is bad enough!


Speedway is the only thing that truly takes my mind off the pain. It is so absorbing, plus there is the camaraderie of those who stand near me each meeting, every season. There is the debate about who we'd put in as a rider replacement, how the points will be shared in the next heat, how good or bad the referee's decision was for an incident. We moan when the team aren't doing as well as we think they should and celebrate our riders' achievements.

The lengths I go to to watch speedway

Unfortunately speedway rates at the top of the ranking in terms of payback. During the Summer when you can have a meeting each Friday for several weeks, my life becomes little more than trying to get over one meeting and prepare for the next. Saturday morning I wake feeling as if I've been hit by a bus. I wait for my tablets to kick in, but they only help a little. I don't remember much of the weekend, spending most of it unconscious. It isn't sleep because I don't get a say in it. I can't fight it, I literally pass out.
By about Tuesday I have rallied enough to possibly go to the Lakeside Shopping Centre. But that's it for the week. The rest of the time is spent doing as little as possible in preparation for Friday again.

Each season has become that little bit harder. If I'm honest this season has almost been too difficult. The pain has broken through more during the meeting and by the time we get back to the car the pain has become absolutely unbearable. How Eric gets me from the car back into the house, undresses me and gets me sat in the sanctuary that is my reclining chair is beyond me..

I am proud to say that despite all that I've described, my attendance has been nearly faultless again this season, as it has been in previous ones.It doesn't matter how I feel I go, it isn't up for discussion.  No matter what CRPS throws at me I will continue to go to speedway. I refuse to let CRPS stop me doing this where it has so many other things since I got it.....  the line has been drawn and is one that I don't intend to to be pulled over anytime soon!

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