A friend took me to my first ever speedway meeting not that long after diagnosis. I loved it, the smell, the roar of the bikes, the drama that could unfold over the course of four laps. I didn't miss a home meeting for several seasons but the impact it had on my condition grew progressively more extreme. I remember at the beginning (2006) I could walk extremely slowly with the and of walking sticks to 'our spot' on the home straight. Sitting in the cold wrapped in a sleeping bag didn't do me any good. I was in utter agony but it was worth it. Roll on a year and I was wheelchair bound, Eric having to pull me backwards over the rough ground to get to my viewing position. I was able to have my legs elevated but by the end of the evening I would scream as he helped me transfer from the chair to the car. How Eric got me back into the house and the safety of my chair I really don't know. Trying to stand on either foot was horrifically painful. The slightest movement unbearable and so very hard to make yourself do. I fought on for a few years, by now in an electric wheelchair but eventually I had to concede defeat to CRPS and stopped going. I watch as much speedway as I can on television, even having Polish satellite TV installed. A typical season will see me watch over a hundred meetings from here and around the world. It isn't the same but it's the best I can do.
Battling with CRPS
Saturday 23 June 2018
There’s always something to try
A friend took me to my first ever speedway meeting not that long after diagnosis. I loved it, the smell, the roar of the bikes, the drama that could unfold over the course of four laps. I didn't miss a home meeting for several seasons but the impact it had on my condition grew progressively more extreme. I remember at the beginning (2006) I could walk extremely slowly with the and of walking sticks to 'our spot' on the home straight. Sitting in the cold wrapped in a sleeping bag didn't do me any good. I was in utter agony but it was worth it. Roll on a year and I was wheelchair bound, Eric having to pull me backwards over the rough ground to get to my viewing position. I was able to have my legs elevated but by the end of the evening I would scream as he helped me transfer from the chair to the car. How Eric got me back into the house and the safety of my chair I really don't know. Trying to stand on either foot was horrifically painful. The slightest movement unbearable and so very hard to make yourself do. I fought on for a few years, by now in an electric wheelchair but eventually I had to concede defeat to CRPS and stopped going. I watch as much speedway as I can on television, even having Polish satellite TV installed. A typical season will see me watch over a hundred meetings from here and around the world. It isn't the same but it's the best I can do.
Thursday 2 February 2017
Life has to go on...
Thursday 29 September 2016
Dear Bella
Saturday 13 August 2016
Yesterday I lost my best friend
The support went both ways. If anything happened to her, no matter how small, she'd come running to me, leap up and wanted me to make it better. We looked after each other, a team, bound by love. Her intelligence meant she adapted to my limited mobility. All the play we did before CRPS struck, we found a way to continue to do in my chair. Be it playing tug, fetch or rough and tumble with a toy. Her favourite toy was always a squeaky boot which was kept on the shelf behind my chair. She'd stand in front of my chair staring at me, waiting for me to look at her. I knew her so well, those beautiful eyes, one brown, one blue, told me what she wanted. I could say 'what do you want' and her eyes would immediately look at the boot then back to me. Amazing really, how many dogs can do that? I could ask her to go and find her boot. Off she'd go, looking for it. She'd ask for a treat in a similar way. I'd say 'you'd better go and ask your master' and she'd immediately jump on the sofa, sit next to Eric and paw at him. None of it taught, just that bond again. My clever, clever girl!
Thursday 23 June 2016
When is a life no longer worth living?
Thursday 17 March 2016
Another setback, but the battle goes on
Time for another blog post and as always it's my way of working through something that's troubling me or reflecting on my life as it is now. For those who haven't read my blog I have suffered from CRPS (Chronic Regional Pain Syndrome) for the last ten years. It started in my right foot, moved up to my knee and then jumped to the left leg as well. I won't bore you with all the gory details, suffice it to say that I'm in constant chronic pain 24 hours a day (apart from the respite that is sleep), 365 days a year. Pain so severe that along with 14 other medications I constantly have 55mg of slow release Morphine flowing round the system. It helps a bit but not much. The pain takes every form from stabbing, burning through to horrible tingling like electricity running up and down your legs. CRPS has left unable to walk other than shuffling along in the arms of my wonderful husband Eric for the odd metre or so. My life as it was ended, I was no longer a busy Physics teacher who played golf off a 6 handicap.
CRPS moved into my eyes and both upper arms in 2013. Most recently it has moved into my mouth and I'm classed as having Whole Body Pain Syndrome. Basically my nervous system is completely broken. Limbs go boiling hot or freezing cold at will, the slightest breeze over exposed areas makes the pain even worse and I now can't eat various foods because it's too painful. It is a case of where will it move next? Read my other blog posts if you're interested.
Life now is spent in my electric reclining chair with my legs up. I have to have my legs elevated and covered all the time otherwise the pain becomes even more unbearable. Similarly I constantly have a fleecy blanket over my upper body to protect my arms. I rarely go out now, any semblance of normality just doesn't exist for me any longer. Eric became and is my full time Carer. He does everything, something that frustrates the hell out of me. Actually life frustrates the hell out of me!!
Two new things filled the void, speedway and later on, archery. Eric used to take me over to Arena Essex to support the Lakeside Hammers in the early years, but this became too difficult so I now watch as much as I can on television. I've even had Polish satellite television installed so I can watch that as it isn't shown over here. I love it and can't wait for the season to really get going.
Having always been 'sporty' I missed the active lifestyle of my previous life. Archery was something I could do, sitting in my electric wheelchair with my legs elevated. Not exactly easy but I had some coaching and got pretty good. It was great to be good at something again, I could compete with able bodied archers and won various medals and cups from my 'dip' into competitive archery. It took a terrible toll on me, as does everything else, but I loved it.
Which brings me to now. I always write in my journal after I do archery. Be it good or bad. It's been all bad when it comes to archery since last November. This coincided with an abortive change of medication which made all my symptoms worse and did more damage than I would ever have thought. Here it is.....
16/3/2016 Archery today - 60cm target, practice
Well, mentally I think I'm coming to terms with the fact that I just won't be able to shoot like I could anymore. Every time I slot an arrow on the string I'm trying to shoot with the correct technique, and to be honest I don't actually think I'm doing anything wrong. It's a physical problem, namely my arms have deteriorated to the point where I just can't shoot 'technically well' like I could.
It's happened? After three years of fighting it, CRPS has destroyed my arms' range of movement and strength, and with it taken the quality of my shooting away. My arms just don't 'listen' to me like they did. The 'feel' I had has gone and with it the precision, control and repeatability of my draw that produced the scores I shot and the medals I won. Who would have thought that an attempted change in medication (with the hope of making things better) would leave me in a worse state than before? It's cruel and I am taken right the way back to when I first got CRPS. Yet again this condition is doing everything it can to strip me of doing something I love and what defines me as a person.
Long term it won't win, because I will continue to shoot, I look forward to every session, and although I might get frustrated when an arrow is utter rubbish because I've released too early or it goes low because I didn't hold my anchor point, there are always positives to be found. Today, for the first time in ages I didn't miss the target. There were loads of awful arrows, but every one ended up in the target somewhere. That's a reason to be cheerful in my book!
I also feel a little bit more in control of when I release the arrow. Bizarrely my arms/fingers have released the arrow without conscious thought more and more since November. It seems utterly ridiculous doesn't it? But that's what I've been up against. I've worked hard in the last few sessions so it feels good when I manage it. It might only be 3 or 4 arrows in an end but that's an improvement. I actually scored 52/60 for one end today. Chuffed. In comparison to before it wouldn't have been that good but I'll take it now that's for sure.
The other positive today was that I went for it a bit more, opened my shoulders and shot with more purpose. What's the point of being tentative which isn't going to result in a good shot anyway? There was one shot today, where I thought 'wow, I've not shot like that for a long time'. It felt wonderful and went dead centre of the target. There, another positive!
Will I get back to where I was? I honestly don't know, but I will continue to try and most importantly enjoy it however good or bad it may be. As a friend told me recently:
Here's the thing….. You are an Archer. Good or bad doesn't matter really. You achieve every time you pull that bow.
Thursday 26 November 2015
Archery, CRPS and me...
So here it is...
Me, shooting outdoors |
It didn’t and my body demonstrated it’s utter disgust by reacting so violently. Yesterday I managed to eat toast and a bit of soup. My pain control is worse until I can get back to the 50mg slow release Morphine that did a better job than I had ever imagined. I’m nowhere near a 100%. It’ll take a month or so to get back to where I was. Common sense says 'What am I like’ to even try and shoot a complete round today?