Physio, CRPS and archery....

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

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

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

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

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

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

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

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.

Second class citizens?

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

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

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

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

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

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

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

Grinding to a halt

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

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

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

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

Staying Positive.... how?

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

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

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

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

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

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

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

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

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.

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....