Sunday, 14 December 2014
Wednesday, 8 October 2014
.... I'd need a rewire, simple as that. You see I had the letter from my Consultant about my recent appointment. We meet every 6 months, chat about how things are, decide that we are getting the best we going to get from meds and then part with a 'see you in 6 months'.
I am well aware that I'm far luckier than most in that my Consultant has no intention of discharging me, is genuinely interested in my wellbeing and wishes he could do more. He Is always on the lookout for anything which might help, but knows I am pragmatic about my prognosis and he can tell it how it is.
This time though was a little different. My diagnosis has changed. It is now officially:
l. CRPS in legs
2. Chronic Widespread Pain syndrome
The latter is new, and means that my entire nervous system is hypersensitive. Hence my rewire quip at the start. What does this mean for me?
Well, everything and nothing really. My arms have been affected a year and a half now, my eyes have also been 'misbehaving' for many more years than that. In both cases the symptoms can't be explained by other disease, illness etc. Part of me worries about what will 'go wrong' next.
It's only natural I suppose. Here's an example. I've been suffering from a tooth/gum infection for over a month now. Surely it should have gone by now? Antibiotics helped a bit, antibacterial gel a bit more but it still isn't right. Is it going to linger for a while? Will it ever get better? Has another part of my body become affected? It would be easy to become paranoid wouldn't it? Or extremely depressed, frightened to do anything.
Not me. The worsening of my condition, spreading throughout my body changes nothing. My philosophy has always been, and will continue to be, to remain as positive as I can be. I fight everything that comes with having chronic illness . I do what I can, but my quality of life remains rubbish, stuck in this leather reclining chair with my legs up, gazing at the same four walls for days on end. I firmly believe that it is a waste of time moping, feeling sorry for yourself etc. It gets you nowhere because you're still stuck in the same useless, broken body. Make the most of what you have, that's my motto.
My biggest 'v sign' to my condition is archery of course. Anyone who has read my blog knows how much it means to me, it's an integral part of my existence, my life. I look forward to every session, and then immediately yearn for the next. I would shoot every day if my condition allowed. I push it as far as I can, but even I have to be sensible to get the best out of myself. Twice a week seems to be the optimism. Up to now I've shot against myself (trying to better my scores each time), but will be entering some competitions in the months to come.
Which brings me to something that is both utterly fantastic and utterly cruel. Recently there has been the opportunity to apply for selection to a fast track Para Archer program aiming to shoot at Rio 2016. I know some people who have applied. I did ask my coaches what they thought. Only in passing and fully expecting them to say no chance. Imagine my shock when the following came back:
'knowing how dedicated, committed and strong willed you are, there is no reason why you might not set your own goal for becoming a Para archer in the future' along with telling me face to face that I had the technique needed to compete at that level.
Wowzer!!! I couldn't believe it. I was completely gobsmacked. Me? No! Never in a miIIion years!!
But here's the cruelty of it.... They explained that for me to fully participate in the program I'd have to travel all the way to Lilleshall a couple of times a week. That's before you consider the necessary extra practice I' d need to do, shoots around the country or even abroad. And everything else that would be involved Oh, and you're only allowed an 80cm wheelchair length at shoots. Mine is 4 feet 6 inches! This was their only concern, and rightly so. It is a complete non-starter, I couldn't even remotely cope with it. Never in my wildest dreams.
To be told I have what it takes to be a Para archer means the world to me. That they feel that I'm capable. The reality of course is that nothing has changed. I can't do anything about it, but can take the positives. It is enough to know that they feel I could. That'll do for me....
Monday, 23 June 2014
|Yes, I really do shoot like this!|
|A simple setup..|
As I said before archery is perfect Physio, and together with lots of stretching whilst sitting in my chair I slowly but surely regained most of the range of movement I'd lost and was more able to use my upper body strength again. When my arms were at their worst I feared that this wonderful sport I'd taken up, and and got such pleasure from, was going to be taken from me. Like golf and the other sports I did before getting CRPS. Not without a fight that was for sure! It never ends, because my arms start to deteriorate almost immediately after I've finished shooting. A few hours later I can barely clench my fist and my arms become harder and harder to move as I have to push through the pain more and more. That's the wonderful thing with archery, it never makes my arms worse, only better although of course I suffer the usual payback that comes with doing anything.
|All 6 arrows in the yellow...Yes!!|
I'm chuffed to be back up to the 28lb limbs I was using before CRPS struck in my arms. Albeit with the lightest recurve bow setup we could put together. My Fiberbow riser weighs in at just 530g. I don't use a clicker, have a bog standard arrow rest and a short (19") long rod. That's it. Very much the minimalist approach compared to all the gadgets and gizmos I see on most of the bows around me.
Which brings us to the very heart of this blog post. When CRPS struck in my arms I could easily have given up as my form vanished. Frustrating wasn't the word when you know you can do something but can't get anywhere near it. No matter how hard you try.
Not only did I get myself back to where I was, I've achieved so much more than that. More than I could ever have imagined. Between March 2013 and November 2013 my handicap tumbled from an initial 56 (100 is the lowest) to 40. I won an award at the club's AGM in recognition. Wow...
Last week I shot my first outdoor round, a Short National, scoring 508, which is a 49 handicap. Apparently that's actually one place better than what you need to achieve a First Class classification but to do that you have to shoot 60yds and 50yds rather than the 50yds and 40yds that I did. Take that CRPS!!
|My first archery trophy!|
I've managed to keep improving, bettering my groupings and with it my scores. I have a Summer of shooting to look forward to, with the new challenges that brings. I'll be trying to shoot lots of rounds outdoors and see what outdoor handicap I can achieve by the end of the season.
I admit to feeling really emotional having written, and then read through this. I can't put into words the buzz, the joy archery gives me. Yes, even when my arms are doing their best to stop me. CRPS stripped me of everything I was good at eight and a half years ago. I never thought in a million years I'd ever be good at anything ever again. But I am. I'm good at archery. Despite having CRPS in all four limbs and everything that goes with it. Who'd have thought it?
Tuesday, 25 March 2014
I'd been given my grandfather's old golf clubs and spent many an hour belting golf balls backwards and forwards across the student cricket pitch that was across the road from my house (we lived on an Agricultural college). The same cricket field I did endless circuits around to get match fit for badminton and tennis.
Thursday, 13 February 2014
I started this blog post ages ago but couldn't finish it. Why? Because I simply couldn't write anything else. The strain of having to write it, both physically and mentally took a huge toll. I received my award letter a couple of days ago so it seems as good a time as any to finish it.
I have finally finished writing the epistle to the Romans that is completing a Disability Living Allowance (DLA) form. Some 40 pages long with some 63 different sections to complete, it is sadly a necessary evil to receive DLA and at which level. They can also call you in for a medical and request further information from your GP or consultant. There are two tiers for mobility and three for care. It is an extremely stressful and tiring process which has caused a massive flare in my arms, particularly the left. lt took me a month to complete it, doing as much as I could each day. It's hung over me constantly, a weight round my neck. Why you might ask? It's simple. The money I receive is vital to our existence, it helps pay the bills and feed us. If I'm turned down I have absolutely no way of replacing that income. How could I get a job when I need help to do the simplest of things like get out of a chair?
The final word count was circa 17,000 words. Of course none of the boxes were large enough for me to explain properly so there were something like 18 overflow pages. I also included some 16 other documents ranging from medical reports, sharing agreements (Occupational Therapy trying to help you by putting in aids which mostly don't help as my needs don't fit into their boxes) ill health retirement award letters . There is so much repetition from section to section because some actions (such as being helped out of my chair) form the starting point for so many other things. To ensure the decision maker at the DWP gets a full picture the only way that you can show just what's involved is to spell it out in detail. Going out for example involves so many different actions we have to complete before I can even get to the car (help with dressing, help with getting up, help to get to and use the commode to name but a few). Everything down to the minutae is included, leaving no room for any doubt of how I live. In all it's degrading glory. Don't get me started on why I have to fill in another form (albeit for a different benefit) a year after I filled in the ESA form. It seems too much to ask that these different departments talk to each other. In this day and age it beggars belief really!
I'm lucky that I can still write in-depth and articulate reports when I need to, albeit incredibly slowly. There is an obvious difference to the format of the form since the last time I filled one in, back in May 2009.....tick boxes. Lots and lots of them. You could just tick the boxes that apply to you, write the name of your condition in a table together with the medications you take and send it back. But does this approach guarantee that they are getting the full picture? Of course it doesn't and most surely mean that lots of people are not getting the reward they should. This . raises several questions? What happens to those people who can't write like I can? Those who can only tick boxes because they might have learning difficulties or simply don't know what the form is asking them? Or have mental health issues which make writing about their condition worse? Why is there no longer a specific box where you are asked about the condition you suffer from and how it manifests itself? Is there a hidden agenda, a checkbox doesn't give the full picture after all does it? A person may have problems which would put them in a higher tier but they haven't elaborated, just ticking the box that is the nearest match? After all the Government has cut the welfare budget by £20 billion with more to come. They have to do this somehow or am I just being skeptical? This goes some way to explaining why some 40% of rejections are overturned at appeal. Because the person can describe their situation better picture or have someone with them to speak on their behalf.
I firmly believe that the amount of help Eric has to provide would warrant the higher care component. Just what is expected otherwise tell me, what else would he have to do? I subscribe to the excellent benefitsandwork.co.uk website. They recently sent me an email about Personal Independent Payment (PIP) which is the Government's replacement for DLA. This doesn't work as a form as such but seems to require you to 'tell them about your situation and how it affects you?'. If that isn't a method designed to fail people I don't know what is. And the figures seem to justify my point with only 37% of people being awarded it. Bearing in mind that the fraud on DLA was only 0.5% how can it possibly be so low? Well, I reckon the Government has managed to move the goal posts suitably so that it is nigh on impossible to get it. Easy to do, and they will insist on taking ever more billions from the DWP budget. Easy fodder the sick and disabled. We don't have the energy to fight back do we? Ah, but we can vote and I know it won't be yellow or blue that's for sure....
Back to my application. I recieved a letter Friday before last saying they'd received my form on 20th February. At least they'd got it. I didn't hold my breath as to when I would next hear from them. Imagine my surprise then when I got a phone call last Monday (3rd March) asking me how long it had been since my condition had progressed to how it is now. 'A couple of years' was the best guess I could come up with. 'That's fine' she said. 'We have to check timescale when a change occurs to ensure it's been 3 months'. 'A decision will be made this afternoon and a letter will come out to you in the post'. I asked if she could tell me what the award was which she couldn't. She did say it was 'favourable'. A couple of days later the brown envelope arrived. Higher rate mobility and higher rate care, both for an indefinite time. The relief was enormous and it was great to see that Eric's care has been recognised as the care component has increased from middle to high.
It's a strange feeling when you get the highest level of an award you can get. Initially I was delighted and relieved. That source of income is secure and will be until they migrate me onto PIP whenever that might be. It wasn't long though before I reflected on the speed it took for the decision being made. They include a list of reasons to show why you've been awarded the levels you have. This stretched to 2 pages, listing item after item that I can't do or need help with. It's really sobering that my condition is so bad that dealing with my application takes such a short time. The same was true for ESA as well. And it will be for PIP migration as well, hopefully! There are so many people out there who have a huge battle in getting the award their illness / disability that they should. From the stress of a medical to the appeal process, it sounds truly awful.
It's good that something hasn't been a battle for once. That said I wish I hadn't had to apply in the first place way back in 2006. Contrary to what the Government would have the public believe, the vast majority of us on sickness related benefits would give anything not to be sick or disabled. Why would anyone choose to live the way I'm forced to because of CRPS? There will always be some who try to fiddle the system. Any system. To tar us all with the same brush simply isn't fair and very wrong. Painting a section of society as 'scroungers' is wrong on so many levels. But to pick on those least able to fight back is cruel and despicable.