Sunday, 26 August 2012

Taking aim?

I'm expanding my horizons, getting back into something that I did several years ago, then gave up because I couldn't make the step I'm making now. All sounds a bit cryptic?  Yesterday I joined an Archery Club!

Anyone who reads my blog knows that Pre-CRPS I was fit, active and sporty. I played golf off a 5.6 handicap both at club level as well as representing Essex. I have at one time or another played Badminton, Tennis, Squash, Hockey, at Junior County and later Club level. When CRPS struck all that was taken away in an instant. It was devastating and one of the biggest blows that CRPS made to my life. I was desperate to find a sport that I could still do. The options weren't great, unsurprisingly, when you're stuck in a wheelchair with your legs elevated in front of you. In many ways it would have been so much better to be paralysed. That way I could just shove the legs out of the way and get on with life, work and sport. Just another cruel aspect of CRPS.

After lots of research Archery seemed a good punt. We found a Disabled Sports and Social Club nearby where I could go and try. After the first session I was hooked. Eric had a go as well so it became something that we could do together again. We were taught how to shoot, safety etc. and it wasn't too long before we headed to an equipment shop to be kitted out with our own bows. I also tried air rifle shooting at the same club but it wasn't a patch on archery! Over the next year or so we went along each week. Unfortunately numbers doing archery dried up, to the point that it was just us, and the coach stopped going as well. It was time to find an Archery Club!

Sadly this didn't go well. There weren't many near us but we took the plunge and went along to one. It was a disaster. I was the only one in a wheelchair, which wasn't the biggest problem. They shot to a whistle. One person steps forward, shoots their arrows, whistle goes, you swap to the person behind, they shoot, whistle goes again, everyone goes and gets their arrows. A great system for able bodied people but horrendous for someone who had to try and manoeuvre into position each time. They made no allowance for me being in a wheelchair, I stuck out like a sore thumb. It was horrible. Having been put off completely, we gave up and bought a target, stand and net for the garden and shot irregularly at home. Eric breaking his arm threw a huge spanner in the works, so that largely put paid for us shooting in the garden. To this day it hasn't healed and won't so he can't shoot anymore. I didn't like to ask him to get me set up to shoot because I didn't want him to have the hassle. He didn't mind but I did. So in the interim years I have done very little.

I've talked about me falling apart mentally in recent months in other posts. Speedway proved to be the buzz that helped me fight through that and come out the other side. I started to think about the off season, which runs from the end of October through to mid March. I go out even less during the winter as there is no speedway and have nothing to really look forward to. We go to Lakeside once every couple of weeks and have the occasional lunch at a local pub. Apart from that I'm stuck in my chair in the house. What is there to look forward to? Not a lot. I needed something else which would give me a buzz and something to look forward to? The obvious candidate was archery. But how to do it, with other people and on a (CRPS permitting) more regular basis? The answer of course was to dip my toe in the water again and try to find an archery club that would be supportive of disabled archers. 

The power of Twitter has made this possible. I sent a tweet saying simply:
  "Does anyone know of an archery club that accommodates wheelchair archers in (my area)? Please RT"
I watched as it was retweeted time after time after time. Within 10 minutes I had several people from all over the country recommending my next course of action, or clubs that were in my vicinity. I am now in touch with a Paralympic archer about to take part in London 2012. Simply by sending out that rather innocuous looking text. Amazing! It was great to be reassured that archery clubs are friendly places and that my situation wouldn't be a barrier. Within 24 hours I was in contact with an archery club that sounded absolutely ideal. I went to their Open Day yesterday, and signed up before I left. I have found my ideal club! Exciting times!!

There are so many pluses. You can shoot 364 days of the year because the club owns the land. Ideal because I'm not tied to a specific time or day, I can choose to go when I feel up to it. I won't be able to go very regularly because of the inevitable punishment, but to be able to go at any time is brilliant. Of course there is the social side of things as well, which will be a real bonus as I'm stuck in the house most of the time. We can park the car at the back of the field to improve access. To be honest the car park is right next to the field, but it's a bonus. In the winter I can shoot on Friday evenings. They immediately let me have my own target despite the fact that lots of people were trying out Archery. The same will happen indoors meaning I can stay put once I'm in place ready to shoot. Disabled toilets at both venues, indeed both sites are totally wheelchair friendly. The people were so friendly and welcoming. Being in a wheelchair didn't matter. Indeed when I was introduced to the Chairman it was me who mentioned my legs being up being unusual. His response was 'Is it?'. If further proof was needed that this was the ideal club for me, that was it. Wheelchair, what wheelchair?

Monday, 13 August 2012

Guest Post - A carer on social networks

What follows is a guest post which resonated very strongly with me.  It highlights what I have come to realise, namely that we have to look out for our own mental health first and giving support to others second. I got the balance wrong and paid the price. Thankfully I have worked my way through it and will be more careful in future. I hope it helps others avoid 'falling apart'. Have a read, I thoroughly recommend it...

When is enough really enough?
I am a huge fan of social networks such as twitter and Facebook but are they really harmless places to socialise?
Oh I know about the dangers of stalkers, pedophiles etc and the danger they represent but what about to 'ordinary' everyday users?
I have come to realise that these social sites are used for many different reasons by many different personalities, maybe that is what keeps it exciting for us.
I have however been made to look more closely at what can happen to the 'carers' of twitter recently.
Carers are the people who often have problems/issues of their own, be that illness, disability, emotional issues etc. this doesn't surprise me as I have always believed those most willing and able to support others are often those who have experienced things in their own lives, maybe that is why they reach out to others or why others reach out to them.
This is a good thing and thankfully people do still care enough about their fellow human beings to interact in this way. But it carries with it responsibility not only to the person you are helping but first and foremost to yourself.
I have seen several of my friends get overwhelmed by the demands placed on them recently. 
If you dread logging onto a social network for fear of what may be asked of you, or logging on to check on your 'friends' takes precedence over other maybe more important things then you need to take a step back and look at what you are doing and what you could do differently.
Your own emotional and physical health must always be your priority or you will find yourself rushing headlong Into burnout.
Burnout is a very real problem and should be taken very seriously. 
Maybe it is my background in Psychology That has made me so aware of how awful it can be and the warning signs we should be looking out for.
I reached a stage in my working life where I used to have to have stern words with myself before a client came to get my head in the right place to work with that client. 
There were times when a feeling of real dread would come over me at the thought of the days counselling ahead. Admittedly I had health problems to contend with as well but I pushed on for far longer than I should have done.
I have to admit I wonder if we allow ourselves to get so involved in others issues or causes as it enables us to put our own issues on the back burner for a while,
Whilst your head and your heart is feeling for and at times fighting for other people or other causes you have no time to look at yourself and what may be going on in your own world. 
It's a clever distraction but don't be fooled, whatever it is you are covering up or running from will need facing one day and you will have depleted energy with which to face it if all of your energy has gone to others.
Don't stop supporting or caring about your fellow human beings as it is what makes you special and undoubtably it is appreciated but do please keep your own health and well being uppermost in your mind, taking a step back now and then is preferable to having to cope with burnout. 

Used with permission from Penny's Points blog.

Saturday, 4 August 2012


They say a little bit of what you fancy does you good. It's certainly very true for me where speedway is concerned. What a tonic last night was. I feel a different person today, albeit one being well and truly punished for my 'guilty' pleasure.

It was so nice to chat with several people on the way to my 'parking spot' beyond the main stand. The speedway family is a wonderful one, both in real life and on Twitter. It was so lovely to have been missed. You don't need to know anyone's name, indeed I have absolutely no idea of the name of the lovely woman and her husband I always chat to once I'm in position. Doesn't matter, we have the wonderful connection that is speedway. She comes over, Kai always gets some of her burger. We then chew the fat about all things speedway. How many other places could you go where that happens? Especially to someone who is disabled and in a wheelchair. Most people look away or gawp when we go out. At speedway it doesn't matter. A real bonus this season is that friends I've made on Twitter come and find me to say hello. Steve did last night and it means an awful lot that people take the time to come and see me. 

Already I could feel my spirits lifting, it is impossible for me not to become enthused when I'm talking about speedway in general and my team in particular. The gang arrive, the chaps (whose names I do know!) who I have sat next to since I started going to speedway. The banter really gets going and we're all set. We've decided that we'll will win by at least 8 points, set the world to rights on various speedway issues and debated the pros and cons of a particular rider being at number 5 when he hasn't been riding very much. 

As soon as the meeting gets going it's like being on a roller coaster, the adrenaline flows. The roar of the engines, the smell, everything comes together to produce an exhilarating experience. I forget everything else, including the pain, as I watch four men go hell for leather on bikes with no brakes at high speed. A race consists of four laps and is over in less than 60 seconds. But so much can happen in that time. Just enough time to write down the scores, dissect that race, predict the result of the next and off we go again. It's impossible to find the words but speedway makes me feel alivenoise nothing else in an existence that is so dull and restrictive. 

15 heats (and nearly two hours) later and it's all over. Only now does the pain that has impinged more and more as the time has gone on really hit me. The hell of getting back in the car, the tortuous journey home and the unbelievable pain as Eric tries to get me back in the house when I can't put weight on my right foot at all and only on the side of my left. Back in the comfort of my chair, despite how awful I feel, the buzz is still there. That same buzz that I am still feeling as I write this. 

To someone reading this I must appear absolutely bonkers to go through what I do and all the punishment that lasts for days after. All I know is that the darkness I was feeling has lifted, the world seems a much happier place and most importantly I feel able to rejoin the battle and tackle CRPS head on again. I don't care how bad I feel as I type this, indeed I'm not quite sure how I am! Speedway is my extra drug, better than anything you can on prescription. Roll on the next dose!!

Thursday, 2 August 2012

Wobbly times

My last blog post highlighted the battle I was having with myself mentally. Since then I have had a good positive period when I felt like the old me. However in recent days I have found myself starting to sink again. I spotted the signs this time so it hasn't caught me napping like the first time. It has however prompted some soul searching to try and work out what on earth is going on!

The brain is fantastic isn't it? So protective, it gently wraps us up in layers of cotton wool or whatever the equivalent is for the mind. At the core lie all the horrors, those things you daren't think about or even contemplate. Too awful to bring to the surface, the absolute raw truth of what we face is well hidden by our brain. When it feels we are ready, a bit like an onion, a layer of cotton wool comes away uncovering something previously too difficult to admit or come to terms with. In the last six and a half years so many layers have been removed. Each one has come with an acceptance (often grudging) that I can no longer do something or admitted that my quality of life would be better if I stopped being so damn stubborn, 'give in' and accept more help in some way. We are talking major life changing matters, those things you never want to accept but must if you are going to move on with your life. 

The realisation that you're never going to be able to work again no matter how much you'd love to be able to. Others knew many months before I could accept that my working life was over. The acceptance that you simply can't walk anymore and the dreaded wheelchair really is your only option if you are to get out of the house. The fact that you've completely lost your independence and are reliant on others for everything. That at the age of 39 you have to use a commode because you simply can't carry on dragging yourself up the stairs each time you need a pee. That you're stuck with the life you now have, rubbish as it is, and somehow have to make the most of it. I could go on but you probably get the idea.

I haven't mentioned anything medical yet. Surprising? Well yes, because CRPS is incurable so you have to accept that you're not going to get better. There are various drugs, procedures and so on that can be tried. They won't cure you, they might reduce the intensity of your symptoms if you're lucky. If It's caught early enough you might even manage to go into remission. Very few manage remission in my experience but I'm sure there must be some out there somewhere.
I've seen Consultants from various disciplines and as a result been subjected to all sorts of blood tests, other tests and Endless MRI scans. I've seen three different pain specialists including the top man in London. All concluded there was nothing they could offer which would improve my condition.  I've also been to Moorfields for investigations into severe eye pain, again CRPS related. We've tried all sorts of different drugs, I've had infusions, nerve blocks and nothing has touched my CRPS. The cocktail of drugs I take now only does so much and in recent times they have been doing even less.

Until very recently I had come to terms completely with the realities of my situation. Ok, there is nothing they can do for me, I have just got to get on with it. Perhaps in the future there will be something that will help me. However mentally I was in a comfortable place, fighting as hard as I can to not let CRPS beat me. Getting the most I can out of life despite what it throws at me. Many comment on how positive I am, my fighting spirit. I am the same person I always was, just stuck in a body that doesn't work anymore. Some have said I'm an inspiration, which I neither understand nor believe.

Turns out there was another layer to come off, brought on bizarrely because I have made some wonderful friends, including fellow sufferers on Twitter. I have always done what I can to support anyone if I can. In my nature, why I became a teacher. Having had CRPS for the time I have, I have the proverbial tee shirt. If I can allay fears or explain how something works I'm more than happy to do so. In doing so I have however uncovered this new layer. Where before it was just me, my drugs, tests and treatments I now hear about others'. The infusions they are having, drugs they are trying and so on. None of it makes me feel jealous, or makes me think I'm missing out so what's the problem?

It has completely thrown me, in the sense that it has really brought home just how non-existent my options really are. We can tweak the drugs, but we've been doing that for years without great success. The treatments people are having aren't any different to stuff I've had in the past. I am delighted that my friends may get some extra relief, really gutted when they don't. So why on earth am I fighting like hell to stay afloat myself?

I've come to the conclusion that my acceptance of my situation medically was limited. My wonderful brain was shielding me from what is actually a horribly frightening place and certainly a depressing future. This is going to get worse as the drugs struggle to cope as well. Maybe there will be a time when nothing helps at all. My quality of life which has gone down significantly in recent months isn't going to be radically improved. Indeed it is only going to get worse. When I go to the appointment at the Pain Clinic in September there is a more than a fair chance that my Consultant is going to look at me as he has so many times before in the last few years, and admit that he has nothing else to offer me. Where do you go when you have no options? That is what I must get my head round so that I can get back to where I was. Quite how I'm not sure right now. Help!

I must stress that the last thing I want is for anyone to treat me differently, to not tell me about what what's happening to them. At the moment I have nothing to give and must focus on myself. Please remember I still care though.