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....

The problem with being disabled

I've had CRPS over nine years now, and I've lost count of the number of battles we've had to fight during that time. Anything from getting the benefits I'm entitled to, securing ill-health retirement through to being able to take a full part in the very limited activities my condition grudgingly allows me to do. 

It's hard enough getting through each day, making the most of what seems to have become an ever decreasing quality of life. Mentally you try and stay positive, regardless of what life throws at you but there are times when it all becomes too much. I'm going through one of those phases right now. The pain and exhaustion are too much, I'm losing entire days to sleep and feeling frustrated, angry and demoralised about the situation I find myself in. On various levels. 

The problem with being disabled is that it isn't just the physical and mental effects of your condition you have to cope with. It's trying to live in a world that's set up for the able-bodied. As a wheelchair user I live in a world where there are barriers everywhere, nothing is easy and spontaneity is impossible.

Take something as simple as getting about. If we didn't have our own car, travelling anywhere would be a huge challenge, largely insurmountable. Public transport isn't an option. I can't catch a train locally as there's no wheelchair access to platforms at my local railway station. There isn't a bus stop close enough to be practical. No idea where they go either and could I access them anyway? We could use a taxi service but I dread to think how much that would cost. How many wheelchair accessible taxis are there out there? No, your own transport is essential. Particularly when you need as much help as I do.

Of course getting somewhere is just the first step. Can you actually get in? Do they have wheelchair access? Are the rooms big enough to allow a wheelchair like mine to get in and close the door? Take my dentist as an example. It's like an obstacle course trying to get into the consulting room, Eric has to manhandle me around to try and get round the tight corners. It's totally unsatisfactory to be honest and an able-bodied person wouldn't put up to with it and most likely kick up a fuss so that something is done. As a disabled person we are expected to be grateful that they attempt to accommodate us at all. God forbid we should complain. Or challenge the natural order.

The same goes for shopping. We can only go to covered shopping centres because paving slabs have a tendency to be uneven, and each bump induces more pain. This leaves us with Lakeside, which isn't the most inspiring place but at least they used to have places where you could get a coffee and a sandwich/cake and sit at a table, having rearranged the furniture so I can reach the table. Since the refurbishment there is now nowhere in the Food Court that I can can sit at easily. Fixed benches, or seating areas that are so small I couldn't get into them anyway. There's no point complaining as there's nothing they can do. We eventually ended up in Costa Coffee as that was the best solution we could find. It may seem pathetic but that's always the highlight of the trip for me, having a coffee and a cake. A treat. Is it too much to ask that we can just go and do that like everyone else? Unfortunately not...

Inevitably you end up not going out because it isn't worth the pain and payback that follows. So then it's just medical appointments that come up in your diary that give an opportunity to leave the house. At least hospitals generally have decent disabled access. Why should I have to give up on going out just because I'm in a wheelchair. I'm sure able-bodied people are thinking 'it can't be that bad, she's just making out that it's worse than it is'. I wish that were true. But other disabled users will back me up. For heaven's sake the assessments for benefits are often held in buildings with no proper access. How can that possibly be right? So you go for an assessment but then can't get in to have it. And you'll probably receive a sanction to rub salt in the wound. Madness isn't it? I face similar issues every time we try and go somewhere. 

Archery is massively important, being the only activity I can do in my wheelchair with my legs up. It is good for me both physically and mentally. I look forward to each session and have thoroughly enjoyed taking part in my first competitions indoors. I want to do more, especially as we move into the outdoor season. Of course I can't do many because I simply couldn't cope with it. The recovery time is long and the payback immense. That isn't going to stop me, but even here things aren't simple.

Bizarrely, in the archery world I'm not classed as disabled. CRPS isn't on the list of conditions they use to determine disability so classification is a non-starter. So I can't take part in disabled competitions. My only option is to shoot against able-bodied archers. No problem you'd think? I'm at a disadvantage, but at least in the rules it states that you can use a wheelchair and stay on the shooting line throughout a competition. Guess what? My wheelchair is too long so I fall outside the scope of that too. So that rules me out of shooting in many able-bodied competitions as well. 

It seems for the purposes of archery I'm too disabled to be classed as disabled. Fortunately the governing body is issuing me with a card that means I can shoot as long as the club organising the shoot can accommodate me and my chair. I'm extremely grateful that they are prepared to do this for me, but should it even be necessary? A wheelchair is a wheelchair regardless of length. A condition that renders you unable to walk more than a few feet even if supported should surely qualify you for disabled status? 

It would be so easy to give up, faced with an uphill struggle to do anything or go anywhere. A world that in many ways only pays lip service to the concept of disabled access, and equal rights for the disabled. Sadly you come across discrimination everywhere. In the most unlikely of places. All I can do is battle on, fight my corner and make the best of it.  After all giving up just isn't me is it?

Please let there be something wrong!!

This coming Tuesday (25/6/13) is rapidly becoming judgement day. That's how it feels anyway. My right arm has been causing me 'grief'' since March or even earlier. I have mentioned it before in my blogs and on Facebook. Was it archery that caused the problem? Probably, even though bizarrely, actually doing archery never hurts in the slightest. It started with pain in the top of my shoulder and upper arm when I moved it, and led on to reduced movement in my both my shoulder and upper arm. The back of my arm above the elbow was also painful to touch or lean on. It wasn't unbearable pain, but it would 'catch' when I moved it, especially if trying to pick something up from the table next to my chair. There were brief periods when even the slightest movement of the arm was impossible because it was so painful. These were short lived and seemed to right themselves so we wondered whether a trapped nerve was the problem. On the whole though the morphine I take masked the pain reasonably well. That said it was baffling how my arm could be so painful when I constantly have 50-60mg of Morphine onboard constantly, anti-inflammatories and everything else I take for CRPS. What on earth was going on?

Of course life became much harder. I found it really hard to press down or pull with that arm. A problem when you need your arms to support you at all times. Getting up the stairs which is completely reliant on my arms pulling me became nigh on impossible. Essentially anything that needed me to push or pull with my right arm became much harder and hurt in varying degrees. Supporting myself was restricted to my left arm, my mobility compromised even more. Eric has been amazing as always, providing even more help than ever, doing even more for me.

We were starting to worry that there was something seriously wrong with the arm. Stress fracture? Frozen shoulder? I went to see my GP, who decided to send me for x-rays. Two weeks later (yes really!!!) the appointment to have the x-rays arrived, and seven separate x-rays later we headed home. When the results came back there was  nothing wrong so my GP said he would arrange for physiotherapy. The 'you can now phone us for an appointment' letter took weeks to come and the first appointment they had was over a month away. Utterly useless but what could I do? Forced to wait I had to get on with having one decent limb. I started to use the arm a bit more despite the pain, safe in the knowledge that there wasn't anything seriously wrong. 

Archery actually seemed to loosen everything up a bit so I have continued shooting throughout. Unfortunately my draw began to get worse and worse. I couldn't get myself into a good position, properly lined up etc so my accuracy and consistency plummeted. Sometimes I couldn't even get the arrow on the target let alone in the gold!! Not good at all. I simply couldn't cope with the bow as it was, my injured arm was clearly struggling with the weight of it or the poundage I was pulling. So I took action. Out went the twin rods and v bar on my bow, together with the 28lb limbs. The latter were replaced by 26lb limbs and I now have a very short long rod (just 19" compared to 28" I was using) courtesy of Iris and Tom.

Two 10s and a 9 - I can still do it!

The bow immediately became so much easier to deal with, I could now get myself into a better position but my accuracy only improved slightly and then went downhill again. I was missing the target again. I had obviously been compensating for the limited movement/strength in my right arm because everything was going miles left. My wonderful coaches Tom and Iris diagnosed the problem within the space of 4-5 arrows (my left shoulder was too high). I've worked on finding a method to keep the left shoulder down with the longer term aim being that I can shoot completely free of pain regardless of how many arrows I shoot and with further stabilisation on the bow. It seems to be working well judging by these arrows that I shot earlier today....

So where does Judgement Day come in?
Well, in the last couple of weeks, my upper arm (below the shoulder) has started to throb with pain, gradually getting worse and worse. Doesn't matter if I move it or keep it absolutely still the throbbing continues. It is very swollen, and the skin has taken on a purple, mottled appearance. It is often colder than the other arm and moving it is impossible due to the pain on occasions. Added to the never-ending pain and the other nonsense in my legs I have been sweating uncontrollably, been constantly exhausted and incapable of doing anything. I have had to take Oramorph as much for the arm as my legs which together with all the other symptoms is extremely worrying.
Why? Because those are some of the things that happen in my legs. Which means there is a realistic chance that although the injury has healed (I now have full range of movement again), CRPS has moved or at the very least developed in my arm. This has enormous implications that I really don't want to consider too much right now. Needless to say the thought of being as I am now (with only one decent limb) permanently is pretty grim. I will carry on fighting as always but the battle would be all the harder.

So, strange as it seems we really want the Physiotherapist to find something wrong with my arm on Tuesday. Because if he does this means it can't be CRPS. We can get it better and then it is just my CRPS riddled legs to contend with. Life can get back to normal. Well as normal as it gets for me anyway......

Where do the chronically sick fit into the new Welfare State?

Blog time again. My topic? The much published welfare cuts. Something small eh?

Anyone who has read my blog regularly knows that I receive two benefits, namely Disability Living Allowance (DLA) and ESA, having recently been successfully migrated into the Support Group of ESA for Incapacity Benefit. For me the migration went incredibly smoothly, they took less than a month to make a decision, didn't call me for the dreaded WCA assessment with ATOS. I filled in the form, it must have gone very quickly to a decision maker and the rest as they say is history. Although it was a huge relief to be migrated so easily compared to so many others, I have to admit that it is a very sobering and upsetting realisation to have it acknowledged that I am so bad I was an automatic 'to support group'. Yes, I know I'm realistic about my situation, but the numbers of people who have got into the support group without a battle is small. Really small. And I was one of them.

I also get a paltry Teachers' Pension (on which I pay tax I hasten to add!). We don't get housing benefit, council tax or anything else. Eric gets no help from social services (we did get some money to pay for a cleaner when he broke his arm but that has stopped and didn't cover the cost anyway) despite the fact he cares for me 24/7 with no respite at all. His Carers' Allowance ended when he reached 65. Apparently you are no longer a Carer once you've retired. Of course for him nothing changed. His care for me is the same as ever.

Get to the point I hear you cry! Here goes....

I am getting more than a little sick and tired of being branded as someone who is 'a skiver', 'sees benefits as a lifestyle choice' or any of the numerous, derogatory phrases and arguments being banded around in the press and on the news. It seems that anyone on benefits is fair game, we are targetted by politicians, newspaper columnists, and numerous others. Too many to list here. Google welfare state, look at Twitter or FB, the evidence is all there to be seen. I, like every other genuinely chronically ill  person find myself being lumped in with everyone else simply because I can't work. I detest being disabled, I wish I could work. It'd be there like a shot!! It certainly isn't by choice that I live as I do!! To be blunt nobody would want to live as I do. I don't want to be dependent on benefits, I want to still be teaching, making a difference to children's lives. Not a burden on my husband, dependent on him for everything. All day, every day....

I can't dress, get up, leave the house without significant help. I can't access the kitchen, let alone cook. I live in a reclining chair with my legs up because this is the only way to make life 'easier'. I take so many powerful drugs I would be a health and safety risk. 50-60mg of Morphine are flowing round my system 24/7 and 14 plus other drugs which try to counteract the symptoms. There is no cure, I will be like this to my dying day. That's me being realistic. Something may come along that will help more but my CRPS is so entrenched that nothing will get rid of it. My Consultant has said as much. I challenge anyone to be able to concentrate for any length of time, hold down a job or simply have any quality of life living as I do. Yes I do archery and go to speedway but only because I'm a cantankerous, stubborn wotsit who doesn't care just how bad I will feel for days after. I know I shouldn't be trying to do these activities, they are way too much to cope with but I will continue one way or another. Until I really can't, which I fear inevitably will be the case.

So why am I and other genuinely chronically sick and disabled people constantly being lumped in with those who are able to go out to work but don't? Treated as second class citizens, unworthy of a place in society, let alone have a voice. 'Those who go out to work do the right thing, those who don't are doing the wrong thing' George Osborne recently said in a speech. So I'm doing the wrong thing? How insulting is that? But what recourse do I have? None. The British public agree with the changes to the welfare state we are constantly being told. 'Working people are sick of being worse off than those on benefits'. Does this mean everyone who gets benefits of one sort or another? Those on JSA? Housing Benefit? DLA?Who knows? About the only acknowledgement to those who really are too disabled to work is the rather throwaway 'we will help those with genuine need' or something similar. Can't remember the exact wording because it is always the other  comments that make the news etc.

Don't get me wrong, I want a system which encourages people to work and rewards those that do. As I've already said I would be working if it were at all possible. Please, catch the fraudulent claimants, those who screw over the system and should be working. Those who claim to be too ill to work when really they could. I don't want to be associated with them. But we are. It has also been well documented that large numbers of people have been declared fit for work or placed in the work related group when claiming ESA, only to have this overturned on appeal (approx 40%). The system isn't working but this is largely overlooked because the Government never publicises it. It instead constantly tells us what a burden those on benefits are as I discussed above. 

How on earth do you try and raise awareness about cuts that are having a devastating effect on disabled peoples' lives? For example, the bedroom tax. When you phrase it in the manner the Govt has it seems to be a no-brainer. I didn't actually know that housing benefit paid to those in private rented accommodation excluded spare bedrooms. So on the face of it that sounds fair enough. Do the same for council houses. But what happens if you have a Carer who regularly stays overnight because the the person can't be left? Or your partner and you can't sleep in the same bed because your illness or disability make it impossible? Or you have lots of medical equipment that needs to be stored somewhere as is the case with a lot of conditions. My electric wheelchair takes up loads of room. Oxygen tanks, monitoring equipment, the list goes on and on. Surely there is a case for those with 'genuine need' to be exempt from the bedroom tax? Apparently not, we are all lumped together. 

I do wonder sometimes if the politicians actually believe there are people 'with genuine need'. Those who are placed in the work related group of contribution based ESA get their benefit for a year. These are people who are believed to be able to get back to work with appropriate help. Unfortunately a significant number of people placed in this group simply won't be capable of achieving this. Once the year ends their benefit stops and, as if by magic, they are supposedly healed and now fit for work. No review, that's it. I'm not sure what they're supposed to do after that, disappear into the ether I suppose. 

I could provide so many more examples of how the welfare changes are not fair for those in society who cannot work because of illness or disability. The Govt would have us believe that their changes will make the system fairer and that it will 'always pay to work'. Spare a thought for those who will face serious hardship having no way of going out to work if their benefit were to be reduced or suddenly stop. If my benefits were stopped I could do absolutely nothing to bring income into the house. No matter how much I might want to, it would be impossible. Where would that leave us?

I shall end with this for you to ponder....

The underlying principle of the welfare state has always been that a caring society looks after those who cannot provide for themselves or acts as a safety net for those who have fallen on hard times. Does the new look welfare state really do that? What does this say about our society, is it really a caring one anymore?