Saturday, 31 December 2011

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....

Saturday, 17 December 2011

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....

Wednesday, 14 December 2011

Oh no, not a cold!

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

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

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

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

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

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

Friday, 9 December 2011

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.

Wednesday, 30 November 2011

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.

Thursday, 24 November 2011

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....

Saturday, 19 November 2011

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.

Monday, 14 November 2011

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....

Thursday, 10 November 2011

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.

Sunday, 6 November 2011

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.

Thursday, 3 November 2011

'Educating Essex' - blast from the past

Had completely overlooked this series, 'Educating Essex', until it was mentioned on BBC Breakfast yesterday. As hubby and I were both teachers (he taught Art, I taught Physics and Science) we thought we'd have a look. Especially interesting as it was being filmed in a School in Essex.

It was the first time I'd been 'back in a school'. I know it was on the telly, but you can't help but remember your own experiences from your teaching days. I haven't been back in a school since getting CRPS and as a rule they don't make documentaries about real teaching. Programmes like Waterloo Road aren't representative of what teaching is like, but this was about real teachers, real pupils with all the problems, issues and battles I had seen or encountered first hand.

My first comment would be that nothing seems to have changed in Schools. There are still the really challenging pupils, the children who are bullying someone or being bullied themselves, the teenage pregnancies, the terrible home life that too many children have to deal with. I sat watching and could visualise pupils from my teaching days with me doing my best to help them as I watched the staff on the programme try to do. I remembered having exactly the same kind of conversations with pupils in my Science groups or tutor group. Trying to show them the way, give them a shove in the right direction. Point out what will happen if they leave School with no qualifications because they 'can't be bothered' or only want to mess about, ruining things for everyone. It reminded me just how much I really miss that. Getting a young person on side, working well, doing their best and keeping out of trouble. Making a difference, however small is why I went into teaching in the first place. It was difficult to watch, knowing that I can never do any of that again. I never got a chance to fulfil my potential, go as far in the profession as I could. In short I wasn't 'done' with teaching. CRPS ripped that away from me in an instant.

There was a Deputy Head at the School whose approach to teaching reminded me of myself in the classroom. He was more than happy to have a laugh, be silly, basically doing all he could to make history less yawn inducing and fun, whilst remaining completely in control of the group. He used the word 'cock' in an entirely appropriate manner, but of course the pupils took it a very different way. I remember using the word 'fart' with a group of year 6 pupils who were visiting the school. Appropriate to what I was talking about but using a word they wouldn't expect a teacher to use. They loved it of course!

It's a wonderful feeling during a lesson when you've got a group of pupils really engaged, they're coming along for the ride, hanging on your coattails. Enjoying the lesson as much as you are delivering it. Lots of banter. You get the idea. Most importantly they are learning without really realising they are. I miss that terribly. The programme brought back memories that I've buried somewhere in the dark recesses of my brain, because there is no way I could ever hope to teach again. Living day to day is hard enough. It annoys me intensely when you hear on the news about people being on benefits when they could work, are just scroungers and cheats. I'd give anything to be back in a classroom again. The fact that I can't hurts. Really hurts!

I would like to think that I'd have become a similar Deputy Head to the one in that programme. Truth is we'll never know....

Saturday, 29 October 2011

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....

Monday, 24 October 2011

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.

Saturday, 22 October 2011

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.....

Tuesday, 18 October 2011

Searching for the Holy Grail?

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

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

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

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

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

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

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

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

Saturday, 15 October 2011

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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Friday, 14 October 2011

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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Wednesday, 21 September 2011

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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Sunday, 11 September 2011

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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