Life has to go on...

This is the first blog post I've written since 29th September which I have just read again. I was talking to Bella, struggling to come to terms with my grief, still raw, the gaping holes in my life so obvious and seemingly never to be filled. It's been a tough time since that awful day in August last year when letting her go was my only option, with no time to prepare. Over twelve years as my canine soul mate, gone less than a day after that awful diagnosis of an aggressive tumour in her spleen.

 Any joy I extracted from a life so decimated by chronic illness seemed to disappear with her. What was the point? I felt like an island, sitting alone in my chair, day and night, with only the occasional visit from Kai and Izzy. The worst time was at night, especially when we turned the light off. Without fail Bella had always come for a cuddle, somehow turning herself round on my chair so she would have her head resting in the crook of my shoulder. She'd lick me like mad. I'd fall asleep with her in my arms. She sometimes got off, but should I wake up, usually because the pain broke through, a whispered 'Bella' and she'd be back on my lap in a flash. Now there was nothing. The other three have always slept on the sofa in their usual places either side of Eric. Somehow that just made it worse. Many nights I'd sit in my chair silently sobbing for my beautiful girl who helped me get through life.

  

I was in a dark place, thinking the darkest of thoughts. My pain levels were worse than ever, partly because mentally I simply couldn't block out the pain as well as normal. I couldn't focus, didn't want to do anything, even archery didn't give me the pleasure it usually did. Eric, as always was my rock, he knew how I felt as he'd feel the same if it was Kayla.  Every so often I look up at her photo hanging directly opposite me and talk to her. Some of you will no doubt think it's odd, perhaps mad even, to talk to a dog. But she was my best friend, Eric aside. Part of me was ripped away when she died. I honestly don't think I'll ever get over her completely, such was the bond we had.

So, what's changed?

There are several factors. Time is a healer they say, and in many ways its true. That awful physical loss hasreduced but not gone entirely. The fact I have a picture of her hanging on the cabinet opposite helps. I used to spend ages looking at her, talking to her, saying morning and good night. I still look up at her, talking with her as I would, were she here. Her memory is a permanent. That photo will remain there as long as I'm here.

Much of the credit goes to our four month old Miniature Schnauzer puppy called Millie. Eric wanted another one, to join Kai and Izzy. The breeder had a white litter coming along in a couple of months. I googled photos and was smitten. So, mid November, Millie joined us.

   

I tried really hard to get to know her, lay the foundations for a friendship, just as I did with Bella all those years ago. Initially it didn't seem to get me very far. Eric would have to lift her up, partly because of course she couldn't get up, but also because she didn't seem interested. Certainly not to stay for more than a minute or so. Day after day Eric would have all four dogs on the sofa with him. I remained the island, any hopes that a new puppy would help fill the void left by Bella in tatters. The excitement I felt when we got her turned to despair, and even anger. It wasn't fair!! Slightly irrational I grant you, but when you've dared to hope when already in a dark place it felt like a body blow. The darkness rubbed it's hands in glee.

She has slept on my lap from the first night we got her. But then she'd get off and I'd be lucky if she came back the rest of the day. Play proved to be the acorn. Turns out that Millie is driven by play. I put my legs down, picked up a toy and threw it. Off she went, fast as her little legs could go, picked it up and brought it back on the duvet ready to go again! An utter natural but it meant I could 'do' something with a dog again. My spirits started to lift a little. I'd already got as far as training her to jump onto the lowered leg rest of my chair so we added 'paws up' to get her to put her paws up the side of my chair so I could lift her. She quickly adapted to bringing the toy back to the side of my chair, as near to my hand as she could. Suddenly I was regularly seeing a little head appear at the side of my chair or at the bottom of my legs. 'Can we play mistress'. It was wonderful, although I exhausted myself and made my legs worse but I was determined to play whenever she wanted. The acorn was growing and with it the darkness was abating. Life felt that little bit better.

In the last few weeks everything has changed. Millie seemed to decide she liked it on my lap where she had a captive audience. She now spends pretty much all her time during the day on my lap, sleeping, playing tug and anything else we can try. I can't put into words how life changing it is. At first I thought surely I can't be this lucky, but several weeks have gone by and she's still here. No dog could ever replace Bella but I think she'd be pleased that I have another canine carer. Life is good again. 

I do seem to have my Mojo back. I've certainly got the oomph to take the fight to CRPS again. I will do things despite what it costs me in pain both at the time and the inevitable payback a day (or few) after. Already my enthusiasm for archery is back, I'm shooting more regularly, and better than I have in ages. Coincidence? I've nearly finished all the pieces for my first jumper, a real achievement when I can only knit for a short time in the evenings. I'm reading books again and looking forward to the new speedway season.  

In short, life does indeed go on, and I'm looking forward to it...

    

The problem with being disabled

I've had CRPS over nine years now, and I've lost count of the number of battles we've had to fight during that time. Anything from getting the benefits I'm entitled to, securing ill-health retirement through to being able to take a full part in the very limited activities my condition grudgingly allows me to do. 

It's hard enough getting through each day, making the most of what seems to have become an ever decreasing quality of life. Mentally you try and stay positive, regardless of what life throws at you but there are times when it all becomes too much. I'm going through one of those phases right now. The pain and exhaustion are too much, I'm losing entire days to sleep and feeling frustrated, angry and demoralised about the situation I find myself in. On various levels. 

The problem with being disabled is that it isn't just the physical and mental effects of your condition you have to cope with. It's trying to live in a world that's set up for the able-bodied. As a wheelchair user I live in a world where there are barriers everywhere, nothing is easy and spontaneity is impossible.

Take something as simple as getting about. If we didn't have our own car, travelling anywhere would be a huge challenge, largely insurmountable. Public transport isn't an option. I can't catch a train locally as there's no wheelchair access to platforms at my local railway station. There isn't a bus stop close enough to be practical. No idea where they go either and could I access them anyway? We could use a taxi service but I dread to think how much that would cost. How many wheelchair accessible taxis are there out there? No, your own transport is essential. Particularly when you need as much help as I do.

Of course getting somewhere is just the first step. Can you actually get in? Do they have wheelchair access? Are the rooms big enough to allow a wheelchair like mine to get in and close the door? Take my dentist as an example. It's like an obstacle course trying to get into the consulting room, Eric has to manhandle me around to try and get round the tight corners. It's totally unsatisfactory to be honest and an able-bodied person wouldn't put up to with it and most likely kick up a fuss so that something is done. As a disabled person we are expected to be grateful that they attempt to accommodate us at all. God forbid we should complain. Or challenge the natural order.

The same goes for shopping. We can only go to covered shopping centres because paving slabs have a tendency to be uneven, and each bump induces more pain. This leaves us with Lakeside, which isn't the most inspiring place but at least they used to have places where you could get a coffee and a sandwich/cake and sit at a table, having rearranged the furniture so I can reach the table. Since the refurbishment there is now nowhere in the Food Court that I can can sit at easily. Fixed benches, or seating areas that are so small I couldn't get into them anyway. There's no point complaining as there's nothing they can do. We eventually ended up in Costa Coffee as that was the best solution we could find. It may seem pathetic but that's always the highlight of the trip for me, having a coffee and a cake. A treat. Is it too much to ask that we can just go and do that like everyone else? Unfortunately not...

Inevitably you end up not going out because it isn't worth the pain and payback that follows. So then it's just medical appointments that come up in your diary that give an opportunity to leave the house. At least hospitals generally have decent disabled access. Why should I have to give up on going out just because I'm in a wheelchair. I'm sure able-bodied people are thinking 'it can't be that bad, she's just making out that it's worse than it is'. I wish that were true. But other disabled users will back me up. For heaven's sake the assessments for benefits are often held in buildings with no proper access. How can that possibly be right? So you go for an assessment but then can't get in to have it. And you'll probably receive a sanction to rub salt in the wound. Madness isn't it? I face similar issues every time we try and go somewhere. 

Archery is massively important, being the only activity I can do in my wheelchair with my legs up. It is good for me both physically and mentally. I look forward to each session and have thoroughly enjoyed taking part in my first competitions indoors. I want to do more, especially as we move into the outdoor season. Of course I can't do many because I simply couldn't cope with it. The recovery time is long and the payback immense. That isn't going to stop me, but even here things aren't simple.

Bizarrely, in the archery world I'm not classed as disabled. CRPS isn't on the list of conditions they use to determine disability so classification is a non-starter. So I can't take part in disabled competitions. My only option is to shoot against able-bodied archers. No problem you'd think? I'm at a disadvantage, but at least in the rules it states that you can use a wheelchair and stay on the shooting line throughout a competition. Guess what? My wheelchair is too long so I fall outside the scope of that too. So that rules me out of shooting in many able-bodied competitions as well. 

It seems for the purposes of archery I'm too disabled to be classed as disabled. Fortunately the governing body is issuing me with a card that means I can shoot as long as the club organising the shoot can accommodate me and my chair. I'm extremely grateful that they are prepared to do this for me, but should it even be necessary? A wheelchair is a wheelchair regardless of length. A condition that renders you unable to walk more than a few feet even if supported should surely qualify you for disabled status? 

It would be so easy to give up, faced with an uphill struggle to do anything or go anywhere. A world that in many ways only pays lip service to the concept of disabled access, and equal rights for the disabled. Sadly you come across discrimination everywhere. In the most unlikely of places. All I can do is battle on, fight my corner and make the best of it.  After all giving up just isn't me is it?

The conundrum that is archery!

A bit of background for some of this post to make sense. Here goes...

Prior to getting CRPS in 2005, throughout my 34 years I'd played competitive sport. To County Level in Badminton, Tennis and Golf and club level in those plus hockey. Even at the tender age of 7 or so I was playing cricket with boys much older than myself. My grandad was the scorer for a team in the Birmingham league so many a Summer holiday was spent bowling, batting and fielding. There was talk of me being signed up for a Ladies' squad but I was getting into other sports and left cricket behind. Wonder where I'd have been had I not done that? Irrelevant now...

I'd been given my grandfather's old golf clubs and spent many an hour belting golf balls backwards and forwards across the student cricket pitch that was across the road from my house (we lived on an Agricultural college). The same cricket field I did endless circuits around to get match fit for badminton and tennis.

The sport I was actively doing in the years before CRPS put it's size 10 boot in, was golf. I'd always been a natural ball sports player so it stood to reason that golf came naturally to me. So it proved. I only ever had county organised group sessions which were useless but apart from that was self-taught. l came in on a handicap of 26 (max was 36, now 40) and within a couple of years it was down to 5.6 and still falling. Mentally really tough I was rarely beatable at match play at any level. I was totally focused, very serious and determined. Off the course or when it was just a practice round I was a bit of a joker but when I had my game face on. Well... beware LOL.

You get the idea of the sort of approach I took to sport. I detested losing with a passion. I had incredibly high expectations of myself, then beat myself up when I didn't match up. CRPS took that all away. It wasn't even a gradual loss. Bang, it was gone. The competitiveness got absorbed? hidden? locked away in my brain somewhere because that wasn't going to happen again? I wouldn't get that buzz that comes with a cracking good score or beating someone.

I grieved for the loss of doing sport and all that came with it. My sporting days were over. All the various clubs, racquets and sticks were sold or given away. It all went as I'd never use them again, so why keep them?

l first dabbled with archery about 7 years ago at a disabled social and sports club. At that point Eric could shoot as well so it was great. The distance was tiny, just across the length of a small hall but I was hooked. Sadly numbers dwindled until is was just me and Eric. We tried to join a 'proper' archery club but to say they weren't setup for the disabled archer is an understatement. Epic Fail! Instead we bought a cheap target and shot at home. The frequency became less and less then Eric broke his arm and that was that....

Until I watched archery at the 2012 Olympics and decided I had to try again. It's documented elsewhere that I found a brilliant club who are so friendly and accommodating. I started to get some coaching from the incredibly experienced Tom & Iris who are two of the loveliest people you could hope to meet. They taught me how to shoot properly, a revelation to me having only been taught the basics all those years ago. I threw myself into it, relishing the challenge of mastering what they taught me. A year later, through a combination of their excellent tutelage and a lot of b****y hard work on my part, I have developed a solid, consistent technique, which may not be entirely textbook, but is customised for me and my situation. Namely shooting in my wheelchair with my legs at 90° to my body. Much of the work has been done at home, shooting down the garden as we couldn't go out because of Eric's surgery. I've emailed Iris and Tom for advice as necessary. As I said far from textbook but it works.

The competitiveness that had lain dormant all those years raised it's head and decided to make a reappearance. As I improved and my scores got better the 'competitive me' came back. I wasn't happy shooting 5s, 6s and 7s, I wanted more. I'd only be happy when I was regularly getting 8s, 9s and 10s. Anything less was rubbish. Yes, it was definitely back! It felt good to have that challenge, that buzz again. The excitement of beating my PB. Shooting more than 50 for 6 arrows. I absolutely love archery and no sooner have I finished, I'd be looking forward to the next time.

Unfortunately CRPS has stuck that size 10 boot in again. An injury to my right shoulder was too big an invitation and CRPS moved into my right arm and fingers of my right hand. The hand I use to draw with. Well it wouldn't go to the left fingers would it? Not debilitating enough. It then dd to jump to the left arm. This has happened since March 2013 and has impacted more and more on my shooting. Further changes in equipment and technique have been needed. I have the lightest possible setup now.

As I've already said my expectations of myself have increased the more I've shot, because of my natural competitiveness. And my improvement of some 15 places in my handicap from 56 in March to 41 at the end of the season. Despite CRPS. I'd be lying if I said the ever more intrusive impact of CRPS wasn't having an impact on my shooting but more so on my mental state. I suffer bouts of intense frustration, feeling really down, despair as well as excitement and joy when I manage to shoot really well. Let me try and explain why....

How I shoot from one session to the other isn't something I can control any longer. I am literally at the mercy of my arms, riddled as they now are with CRPS. If my arms are playing up it is completely impossible for me to get into a decent position to draw. Drawing the string for those first few arrows is so excrutiatingly painful for my fingers. But it eases and I do my best. Sometimes I struggle to hang onto the string long enough to aim and shoot in a controlled way. Inevitably the arrows are all over the place, my scores are way below what I'm capable of. It's really hard work with me struggling to pull the string to full draw. You would think I was trying to use someone else's bow with a much higher poundage. lt's uncomfortable, INCREDIBLY frustrating and demoralising. My competitiveness whispers to me, telling me how useless I am. No allowances for how I have to shoot or the problems with my arms.

Of course shooting is the only thing I can do that not only is pain free and has a hugely beneficial effect on the pain, stiffness and swelling of CRPS. I have to shoot every few days, a regime which is brutal, takes so much out of me, makes my legs considerably worse but I have to do it to fight the CRPS, keep a good range of movement and lower pain levels.  So how do I reconcile the competitiveness and the need to shoot (however badly) to stave off CRPS? I have been improving continually, despite everything CRPS has thrown at me so far. It's not all good though. There have been batches of sessions that were an unmitigated disaster. Combination of arms misbehaving, shooting when I really wasn't feeling up to it and the extra demands on life as Eric continued his convalescence. 

I was hoping that now Eric's arm is healed (hooray!!!), my arms might settle down and my shooting would become more consistent and a little easier again. Instead it typically now takes half a 60 arrow round before my arms have 'loosened up' enough to shoot like I KNOW I can. Sometimes they don't loosen up at all and my left arm is as rock hard and stubbornly refuses to relax whilst my right arm simply refuses to go back for enough to use my back muscles. No two sessions are the same, I never feel 'right' at full draw somehow.

So I did an experiment earlier this week. Having shot on Monday, with a score some 50 away from my PB, I decided to shoot the following day. lt was a revelation! From the first arrow to the last I was able to shoot like I could months and months ago. I realised that I haven't been shooting properly for quite some time. I was able to draw the string across my body, maintain a good power line, use my back etc. It felt amazing and of course I scored so much better. Only 9 points shy of my PB. I was elated but then of course the reality sunk in. I can't shoot two days in a row, the payback is way too severe. So what I've proved means nothing really. It's not as if I can do anything about it is there?

I suspect that If the situation was different I could be really good at archery. Instead I'm stuck in a useless body that won't work properly. I do my best to not let the frustration get to me. The need to accept that the bad sessions aren't down to me, aren't my fault. It's my body letting me down (again) because of b****y CRPS, not letting me to shoot to my potential. 

I'm really struggling with it all. The CRPS isn't going anywhere and although archery does it good and shooting doesn't hurt, am I just putting off the inevitable? Will the sessions where I'm utter rubbish gradually become the norm? How will the newly re-surfaced competitive me cope with that? Will there come a point when I have to give up archery completely? That would be almost too much to bear. I can't go through that again, archery is so very important to me, my quality of life, my sanity. I can't see a future that doesn't feature archery so somehow I have to find a way through this. Answers on a postcard please....

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.

The quest for success

I've been mulling over what should be the topic of my next post and I've plumped for the quest for success, or more importantly it's importance to the CRPS sufferer. I'll try and share strategies that we use to try to make sure life is about positives rather than dwelling on the negatives. I hope it helps my fellow sufferers and gives others further insight into this terrible disease.

CRPS takes no prisoners as I've said before. I've been writing this since 6.30am, largely because I'm hoping it will take my mind off the horrendous way I'm feeling and the terrible pain in my legs. I woke up feeling like I'd been hit by a bus. The reason? I dared to go out to lunch with Eric for the first time in ages. So I'm sitting here in agony. My legs are on fire, I have stabbing pains all over the place, my cheeks are red hot (cheers morphine!), I'm overheating badly and my head feels like it's surrounded by a fog that is pressing in on me. It would be terribly easy to feel really down and depressed, wishing I hadn't bothered going out. I desperately try not to and that's a philosophy that stands me in good stead.

As far as it is possible I do my best to take the positive from any situation or anything I do. Not dwelling on what I can't do, which would inevitably leave me feeling down, useless and thinking 'what's the point'. In the early days those thoughts were never far away, and certainly contributed to me considering suicide on a daily basis. I'd be lying if I said I don't still feel totally fed up, desolate, low and resentful on occasions because I either can't do something or am really struggling to cope with the payback. Being unable to do anything is so incredibly frustrating. You have to do things to try and take your mind off the pain, so if you can't? Well it's a viscious circle.

The other really important factor to me staying positive is that I don't set any long term or even short term goals anymore. It's pointless because I never know what I'll feel like from day to day, let alone in a couple of weeks/months time. Sponteneity is not a word applicable to the CRPS sufferer. We make appointments, such as the dentist. However these often get cancelled on the day because I'm simply not up to it. We don't worry if we are a bit late for appointments either, we go at our own pace and get there when we get there. Rushing causes more pain and makes me snappy and irritable. People are fine with it because they know the situation. Similarly as far as possible I don't have a deadline for anything, or at least give myself a lot of time to get something done. It seems ridiculous that it can take me a couple of weeks to order something on the Internet. But it's amazing how I simply don't feel up to getting the tablet out. These blog posts take so much out of me, it takes several days to write just one, but again every one published is a success. It is so hard to do anything whilst suffering chronic pain, so why make it worse by doing too much! For the record it has taken four sessions to get this post done. Hope it was worth it!

Another thing I do is keep a diary. At the end of each day I briefly write what Ive done, and more importantly my achievements for that day. We're not talking mind-blowing stuff here, or things which normal people would thing twice about doing. Things such as having a bath, managing to read a newspaper all the way through, ordering something on the Internet, spending time on Twitter. Here are some typical entries....

26/10/2011 - Played Deus Ex (video game, I always play whilst Eric walks the dogs). Feeling really grotty, spent all day sleeping, trying to get well enough for Jackie's visit. Had to get through feeling grim, Managed to get talking in the end, Really good to see her.

23/10/2011 - Played Killzone 3. Played tennis (I do this sitting in my chair using a Playstation Move controller which I swing as if hitting the ball). Felt dreadful later in the day. Read paper today. Slept lots of the afternoon. Read my book.

22/9/2011 - Played Deus Ex. Went to Lakeside (shopping centre). Really enjoying it although legs not good at all. Bought Sony Tablet. Slept all afternoon.Read part of paper. Read my book.

23/9/2011 - Played Deus Ex. Felt absolutely terrible today. Couldn't do much, tried to rest. Read paper. Managed bit of setting up new tablet. Read my book.

Riveting stuff isn't it? I put 22 & 23 September entries in as they show how doing something like going out knocks me sideways. Typically the length of time spent reading is about half an hour before I can't carry on, similarly the newspaper takes a couple of sessions. Sometimes I read the same sentence several times, falling asleep again before I can get any further. I play the video game for about an hour and a half. However each time I manage to do any of these things it's an achievement, something to be positive about. It is also good to read through my diary when I'm feeling low, reminding myself of what I have managed to achieve.

I try not to think how utterly pathetic my daily efforts are compared to what I used to do. With CRPS you have to celebrate the little things because they are all blows made in what is the constant battle against the pain, exhaustion and everything else that is part and parcel of having CRPS.

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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Grieving for your own life?

Sounds ridiculous doesn't it? Or perhaps sensationalistic? In poor taste? Grieving in the usual sense means someone has died, be it a relation, a friend or a much loved pet. The saying 'life goes on' is cliched but true. You will miss the person terribly, may never get over the loss entirely but you do carry on. It's what we all do, it's what society expects. People are very supportive, life is awkward perhaps as people tread carefully around the subject but then after a while everything settles down and yes life really does go on.

When CRPS strikes, it doesn't just affect you physically. It also has a devastating effect on you mentally. My life changed completely when I got CRPS. I had become trapped inside a body that had seemingly developed a mind of it's own. Was broken, had turned on me. I can't really put a time-scale on it thinking back, but I vividly remember the suicidal feelings that dogged me more and more regularly as it became clearer that I wasn't going to get better, wasn't going back to work. In fact I was only getting worse and having my independence slowly taken away from me bit by bit.

At this point I will try to give a feel for what my life was like pre-CRPS. I have a First Class Honours degree in Physics. I started a PhD at Imperial College focusing on developing new types of lasers before deciding it wasn't for me, and went and did a PGCE a year later.

I was a very good teacher, I've been told this by former colleagues, my OFSTED 'grades' were always excellent, pupils always wanted to be in my science groups, chose 'A' Level Physics because I taught it and my results spoke for themselves. I made lessons fun, did loads of practicals and more often than not the most disruptive element in the classroom was me. I loved teaching, I came alive, 'performed' if you like, full of enthusiasm, making Science fun and doing all I could to dispel the idea that Physics is hard. I was told many times by pupils that I should have been a stand up comedian. I mentored other teachers, be they GTPs or those newly qualified. My career plan was to work my way up through the ranks, Head of Dept, Senior Teacher etc etc..

Sport was my other main love. I was lucky enough to possess a natural talent for all ball sports, ranging from cricket, through golf to racquet sports. I have played badminton, tennis and golf at County level. I also played these at club level together with hockey. I played golf off a 6 handicap (virtually without any coaching) and have had two holes in one. There are lots of trophies and other items littered around on shelves for golfing and tennis competitions that I've won at some point or other. I've played in all sorts of teams for various clubs in various sports. I loved playing sport, loved flogging myself to death at the gym, swimming 50-60 lengths in the pool. Sport of one kind or another was ever-present throughout those 35 years. When I wasn't playing more often than not I was watching it on TV.

I loved walking and playing with our Border Collies Bella and Kayla. They were only about a year and a half and a year old respectively when I got CRPS. I read, was into all things computer, especially repairing and troubleshooting problems. Played video games when I had the time, usually sporting titles. I did all those tiresome, yet necessary chores such as housework, food shopping and ironing. We went out to the cinema, had meals at restaurants and went up to London to visit Galleries etc. All those normal things we do as part of normal life.

Looking back I suppose I could have been been considered a high-flyer. I'd certainly packed a lot into my 35 years. I lost just about all of that to CRPS. Without warning, bang, your life has changed. All those things that you take for granted had become completely out of reach. What was the point of living any longer? I had lost all sense of purpose and was flailing badly. I could only manage to lie on the sofa all day in agony. Doing even the smallest of things left me completely exhausted and in even more pain. I was constantly dog-tired but unable to sleep for any length of time because the pain kept breaking through. I would wake on the hour every hour during the night.

Mere months ago I could happily complete 36 holes of golf carrying my golf bag. I could be on my feet all day, dealing with challenging classes and all the other things teachers have to do. Now I could do nothing, couldn't even stand unsupported long enough to brush my teeth, couldn't carry anything, everything had to be brought to me. Couldn't do any housework, couldn't even make a cup of tea. I had to have help dressing, getting up, bathing, just about everything really. Each morning, Eric would have to pull me round into am sitting position in bed whilst I cried out in agony. Everything had become a nightmare of pain, frustration and degradation. I was eventually to give up on sleeping in bed completely.

Meanwhile the world carried on as normal. My friends all went back to work. It was as if I had stepped into a parallel universe where time had stopped. I couldn't move forward because we didn't have a diagnosis, let alone a prognosis. I'd been setting cover for all my classes at work, but had to admit defeat in the end. How could I set work weeks into the Spring Term when I had no idea what the classes had or hadn't done? Work was the least of my worries, but I hated the fact that I was letting people down even though it wasn't my fault. Human nature I suppose. It all added to the feelings of futility and uselessness.

Perhaps the worst thing though was the catastrophic effect my getting CRPS had on my husband. I haven't mentioned Eric up to now. There is quite an age gap between us and I had wanted to get him out of teaching for some time. He had developed type 2 Diabetes and also had high blood pressure. The sums worked out, we could afford for him to take early retirement, with me continuing to teach. He retired in July 2004. He was going to do all those things he'd never had time for, silversmithing, pottery, printmaking (no prizes for guessing what subject he taught!). Bella had been his retirement present. Only a year and a half into his retirement CRPS completely ruined those plans and he had to become my full-time carer. He did so without complaint, suffered my moods, my anger, my tears. I felt so guilty, felt like a massive burden on him. I was like a huge rock around his neck preventing him from doing anything. Life was not supposed to be like this, why had this happened? What had we done to deserve this?

The worst part of course is that you tell yourself you will get back to normal, return to your life. You can't accept the reality or rather you refuse to accept it. I must have been an absolute nightmare to live with. I wasn't eating, suffered wild mood swings, would sit 'festering', making no attempt to do anything, nor take any interest in life. I had way too much time to think about my situation. I was suffering from depression but couldn't see it. Inevitably my thoughts regularly turned to suicide. I knew exactly how I would do it. I took 40mg of slow release morphine twice a day. I would only need to crush up up some of those tablets, together with Solpadol, Amitriptyline and perhaps some of my husband's diabetes medication. I would wait till he went out with the dogs. Easy.. I figured it would be better for Eric if I was no longer here, he could do all those things he'd planned.

Thankfully I woke one morning and told Eric to take me to the Doctor's. I admitted how I was feeling and asked for help and went onto anti-depressants. They gave me enough oomph to start to fight back. Eric was as always my rock, supportive yet didn't try to influence me in any way. He did tell me that it would destroy him were I to commit suicide. How could I consider doing that to him? Suicide was no longer an option.

The tablets together with Eric's unwavering support gave me the strength to carry on and battle CRPS. The only way I could escape that dark place was to set aside everything that was my life pre-CRPS and try to forge a new life. Instead of looking back I had to look forward and make the most of the lot I'd been dealt. In a way I had to start again. I managed to come round to the way of thinking that feeling down, dwelling on what I had lost was pointless and a waste of energy. It didn't change the situation, so what was the point? It is a philosophy that still stands me in good stead today. I still get periods when I feel down, but can now kick myself out of it. The very dark days have gone forever.

I gradually forged a new life within the constraints of my condition. I took up archery, the only sport I've found that I can do in my wheelchair with my legs elevated. Video games have become a greater part of my life, letting me escape the day to day reality for an hour or so. I aim to be doing something, such as Sudoku puzzles, reading etc all the time I'm awake both as a way of taking my mind off the pain and continuing to use my brain.

I now have an electric wheelchair that allows me to go food shopping, occasionally walk the dogs and go out to lunch with Eric. I can't do these activities very often because like everything else I do I am punished mercilessly after the event. In many ways I would be far better off if I was paralysed because then I could shove my legs out of the way and do so much more.

And finally there is Speedway. A friend took me along to a meeting in the March after I got CRPS. I fell in love with it and am proud to say that I've only missed a couple of meetings in the last six seasons. It plays merry hell with my CRPS, the punishment is horrendous, taking days to recover and I really shouldn't do it. Can't cope with it if I'm honest. Part of me would quite happily stay at home. My husband certainly wouldn't mind as he hates it. He sits reading a book, oblivious to what is going on around him. I will not let CRPS win and will continue to go next season and the next and the next...

So coming right back to the title of this post, I have successfully grieved for the life I had. It was the only way I could continue with life. I do what I can, and constantly push CRPS back. It has taken so much from me, but it won't take everything. I won't let it.....

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Just tell me what's wrong!

Imagine you go to bed one night. Just the same as any weekday night. You went to work that day as normal, in my case teaching, came home, had tea, watched some telly. You get the picture. Nothing unusual, nothing spectacular, just a normal day.

During the night, unbeknownst to you as you sleep, something happens that will completely and totally destroy your life as it was. Something so catastrophically destructive and rare that Doctors don't understand it, can't really treat it and certainly can't cure it. CRPS decided to knock on your door while you were asleep. Little did I know what lay ahead of me when I woke on 16th December 2005.

I went to work as normal on that Friday (16th), with a bit of stiffness in my right hamstring. Thought I must have slept funny. I wish. By the time I was due to teach in the afternoon I couldn't put any weight on my right leg and the foot was freezing cold. I was sent home from work, and by the Sunday my foot was like a block of ice, despite several layers of socks and a duvet wrapped round it. A trip to casualty ensued. I just thought I'd be wasting their time at A&E and be told to go home.

Instead they couldn't find a pulse in my now ischaemic foot and shortly after I found myself sitting in a hospital bed. Not allowed to eat or drink, they put me on a drip to keep me hydrated. I remember it feeling rather surreal, how could this be happening? For the next 48+ hours or so I was attached to a heparin pump and they finally found a pulse sometime in the early hours of the following morning. Think they thought it was a blood clot. How I wish it had been!

Then the testing began. MRI of blood vessels in the leg, normal. Echocardiograph, again normal. They were completely at a loss. I was already getting stabbing pains on the inside of my right ankle and knee, whilst my right foot remained stubbornly cold. Sent home two days later with an appointment at the out-patient clinic immediately they got started again after Christmas.

Unsurprisingly Christmas for us was a complete non-event. We just wanted to know what was wrong. It was like huge dark cloud hanging over us, the fear of the unknown. If it wasn't a blood clot then what was it? Things weren't improving, the foot remained freezing cold. The stabbing pains were ongoing and if anything getting worse. How was I going to return to work after Christmas? Never in my wildest dreams would I have thought at that stage that I would never return to work.

Back to hospital. I had ultrasound on the back of my leg done the day before the follow up vascular appointment. Lovely Consultant but said there was nothing he could do. Absolutely nothing wrong with the vascular system in my leg. It wasn't a clot. He arranged for me to see a Consultant in Rheumatology.

You can probably guess what happened next. Yep, loads more tests. I must by now have had every blood test known to man. The Consultant arranged for me to have a Pamidronate infusion. Utter waste of time, did nothing. Also had a tri-phasic bone scan. All the results were normal. What a surprise! RSD (as he referred to it) was mentioned as a possible cause for the first time.

I felt like I was going mad. I had now had the symptoms for two months or more. There was most definitely something terribly wrong, my mobility was worsening and I was now starting to see similar symptoms in my left leg. Apart from Clopidogrel the hospital prescribed nothing for me. They were I have to say absolutely useless. It was left to my GP to try and prescribe what he could to minimise the pain and other symptoms I was suffering from. I rapidly went through the different classes of painkiller till I was eventually prescribed morphine. I was up to more than ten medications by the time I saw the Rheumatologist the second time. I am still on all of those medications to this day.

I had not been back to work since the day I was sent home. We were also getting more and more concerned about the complete lack of urgency to do anything with me once they found that 'everything was normal'. Nothing we can do other than try to manage the pain (palliative care) so we'll book you into the next joint clinic. Which of course was months away! Eric had started to research the condition and discovered that if treated aggressively within a short time of getting CRPS, you could force it into remission. He was amazing, pushing, hassling, complaining. Trying to make things happen. But like everything else in the NHS, the wheels grind exceedingly slowly. We lost that window of opportunity.

Eventually I managed to get through the very laborious system they run to get to see a Pain Management Consultant. It's an utterly ridiculous system. Appointment to see the Rheumatologist and Pain Management doctors to 'hand you over'. Then you have to wait to go and see a Pain Management Nurse Practitioner to see if you need to see the Consultant. They can't do much, but did prescribe one extra medication which helped a bit. Finally I got to see my wonderful Pain Management Consultant who immediately diagnosed CRPS. He ordered a MRI scan of the lumbar region to check all was well. Yes, of course, it was normal.

By this time everything was considerably worse, particularly my mobility, or rather lack of. It had been more than six months after that fateful night for my CRPS to finally be diagnosed. And in that time it had well and truly got hold of me, remained very aggressive and just seemed to keep coming relentlessly making life harder and harder. I never set foot in a School again, being ill-health retired in 2007.

I've tried to keep my long path to diagnosis as concise as possible but it's vitally important to recognise just how long it takes. As I write this a part of me still wonders whether my CRPS could have been forced into remission had it not taken so long to get to see the right person? Or at least been prevented from moving to the other leg? Of course I will never know and it may well be that my CRPS was always going to be severe enough that nothing would touch it effectively. I just do my best to get on with the life I've been left with. More on that at another time.

Of course you have far too much time to think and mentally you go to pieces. I spent much of those six months feeling sufficiently depressed that thoughts of suicide were regularly present. Were it not for my wonderful Eric and my Border Collies, Bella and Kayla it's safe to say I wouldn't be writing this now. Thank you my love for all you have done and continue to do for me. Without you life simply would have no meaning now.

I'm sure the vast majority of CRPS sufferers have gone through a similar ordeal as me to get a diagnosis. It almost seems as if it is diagnosed on the basis that everything else has been ruled out. In the meantime your symptoms are getting worse, you fear for the future. You can't move on, can't get back to work. You are literally in limbo. The symptoms prevent you from doing things both because of the pain, exhaustion and compromised mobility. You're also worried that you might make things worse. Uncertainty reigns and there is little if any support from the medical profession.

Surely in this day and age you shouldn't have to resort to looking on the Internet to find out about your condition because neither your GP or most Hospital Doctors have even heard of it? And in some cases don't even believe it exists!


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Introducing my CRPS

I have a condition known as Complex Regional Pain Syndrome (CRPS) also known as RSD, a rare disease which affects the Sympathetic Nervous System. CRPS affects both my lower legs from and including the knee downwards. Actually it's moving above the knees if I'm honest but I prefer not to think about it. I also have problems with my eyes. I will have had CRPS for six years come December. I would not wish this disease on my worst enemy so completely debilitating and life changing it is. The only way to deal with the catastrophic effect it has had is to now consider my life as consisting of two parts. Pre-CRPS and Post-CRPS. More on that another time.

The day to day impact of CRPS is that the affected areas are constantly (and I do mean 24/7) painful. This pain is not a gentle ache, we are talking pain of the potency that at times you would happily accept death just to escape it. That sounds ridiculous to 'normal' people, after all everyone suffers from pain, we should just get a grip and get on with it shouldn't we?

My pain is constant, relentless and varies in type and intensity. I constantly have what feels like ripples of fire running up and down the front of both legs. Most of the time I can't actually perceive my legs at all, there is just pain. Then add in the stabbing pains, such as through the middle of each foot, as if you've been impaled to the floor. Or the side of the knee as if someone has stuck a knife in and is slowly twisting it. Or through each ankle, or through the middle of your leg. Imagine this is happening all day every day, it never goes away, never gets better. Indeed it only gets worse if you do even the most trivial of things. Indeed CRPS punishes you for daring to do somethings as simple as have a bath, get dressed or anything else considered even vaguely normal. Life with CRPS is about as far from normal as it is possible to get.

The swelling - gross!!

Sadly you don't just have to deal with the constant pain, there is so much more. The swelling (oedema) around my knees and ankles is frankly disgusting. Years ago I measured around one of them and it was 34". Yes the same as many men's waists. And both knees are worse now, I don't measure anymore. My right foot points inwards because of the swelling around my ankle. I can't see my toes as they are so turned over. Bizarrely both big toes stick up on the air constantly. I cannot move any of them because of the pain. Unfortunately I still have full range of movement so that should my joints get pushed or pulled accidentally they work, producing exquisite, sickening pain. My balance is unsurprisingly rubbish.

What else? Oh yes the hypersensitivity (allodynia). My legs cannot stand anything touching them, my pain increases the longer the contact. I spend as little time as possible wearing trousers, socks. Perversely even the slightest hint of air flow over them increases the pain so my legs have to be covered constantly. The phrase 'stuck between a rock and a hard place' springs to mind. My husband has to help dress me. He is incredibly careful but sometimes he touches me slightly with a knuckle. This causes me to howl with pain. It is unbelievable how the slightest of touches exacerbates the pain so much. Similarly hot/cold water causes a disproportionate response. My husband runs the bath, so I know the temperature is fine. Yet I put my foot slightly in, it feels boiling hot. Movement of water, has the same effect so swimming is impossible. I even pick up the vibrations from the car when we go out. This forces my husband to try and find that particular day's optimal speed in an attempt to minimise the pain.

Speaking of increased pain, when my legs are 'down', say as you would sitting normally on a chair, then my pain increases as does the purpling effect which is ever-present over the whole of my lower legs. I can no longer sleep in bed, so my life is restricted to living & sleeping in an electric reclining chair, with my legs up carefully covered with a lightweight duvet. When I go out my wheelchair also has to have elevating leg rests.

Like so much with CRPS you have to tell yourself that there is NOTHING PHYSICALLY WRONG with your legs, you cannot damage them and the water isn't too hot. Really difficult at timesI can tell you...

The above sounds horrible as I read it back. However it is not exaggerated in any way, I'm just telling it like it is. I remain as positive and bloody-minded as I was pre-CRPS, two qualities that have helped me deal with it. I rattle with pills that do very little and I am constantly 'punished' for daring to push the disease as hard as I can.

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