Saturday, 24 March 2012

I must be totally bonkers?

Well in just less than a week I will be going to my first Lakeside Hammers speedway meeting of the season. It will be the start of my seventh season, and I am proud to say that I have missed no more than half a dozen meetings in all that time. Speedway is my 'line in the sand', the one thing I refuse to let CRPS stop me doing, despite the inevitable cost that comes with it.

My view of the track, before it gets busy!
It has become increasingly difficult year on year, yet still I refuse to give in. I can't wait to get to that first meeting and all the others. I absolutely love speedway, be it the excitement and adrenaline rush that comes with watching four riders going hell for leather around the track (with no brakes), the smell (other speedway fans will know exactly what I mean!), the roar of the bikes, the highs and lows as your riders pass others or are passed themselves. Each race lasts less than 60 seconds, yet so much can happen. There is also the banter with friends, predicting the outcome of each race, cheering the riders on.
I do however have to admit that a large part of me is also dreading it.

It's difficult to put into words just how bad I feel, and how exponential the increase in pain and swelling are both during and after a meeting. It takes me at least 3-4 days of complete rest to even vaguely get back to my 'normal' pain and swelling levels. If there is a meeting the following week I then spend the remaining days desperately trying to get myself in the best shape I can for the upcoming meeting. If there are further consecutive meetings the effects are compounded, I have no chance to recover, let alone prepare myself for the next meeting. It's a downward spiral. Last season, there were meetings throughout August for example. By the time I'd gone to the last one, I was well and truly destroyed. It took a good couple of weeks to get back to anything like my normal CRPS levels. By anyone's standards it's utter madness, but still I put myself through it. Like everything else we do what we can to keep me as comfortable as possible in a vain attempt to minimise the damage.

First there is preparing for the meeting. Hammers' meetings are on a Friday, so from Wednesday morning I do nothing that will take anything out of me. Any thoughts of going in the garden, having a bath, doing my 15 minutes of exercise on the Wii or any other trivial activities by normal standards. I only get out of my chair to sit on the commode. I am even more limited than normal, only allowed to read, watch TV and do puzzles. Oh and my normal session playing a video game whilst Eric walks the dogs first thing. It is incredibly boring but a necessary evil. Thoroughly enforced by Eric, who as always does his best to save me from myself.

All set for the action!
On the day of the meeting I try and sleep as much as CRPS will let me, do even less if it's possible and wait impatiently for the evening to come. Unfortunately everything involved in getting ready to go out is an ordeal. The nightmare that is getting dressed, with Eric doing his best not to catch my feet as he puts my socks on etc. I always become really naggy because I really can't cope with it. Then there is the painful and very slow shuffle to get me out to the car. I now wear my fleecy leg cosy in the car as it helps to minimise the effects of the vibrations from the road. By the time I'm in the car I'm exhausted, naggy and in lots of pain. That's before we start the engine! Usual battle to find the best speed for my legs as we drive the 15 miles or so to Arena. I feel for poor Eric who has to drive at exactly a particular speed which reduces the pain. The speed is never constant, it varies from day to day and even from one road surface to another. He just gets us home as soon as possible after the meeting as no speed will be better, they are all murder. Of course my pain intensity and type has steadily got worse as I have to sit with my legs down in the car.

Once at Arena, mission 'get Jane settled' begins. Eric gets my electric wheelchair organised, pulls me up out of the car and into the chair. Legs up and off we go. Anyone who has been to Arena Essex would agree that the facilities aren't great. It's essentially a banked area surrounding the track. No seating, people either stand or bring their own chair. To get to my viewing position I have to trundle over a sandy, bumpy area under the stand. I used to get dragged backwards by Eric as it was the only way to get me across. Now I can toddle on my own, but it's still a bit of a rollercoaster ride. Once at my usual spot, metal posts go in the ground, to support my legs and prevent me rolling off down the hill. I then manoeuvre onto bits of paving slabs and that's me in position for the rest of the evening. For obvious reasons, I can't move during the meeting, go to the toilet etc. We also have to ask people if they would move over slightly because I can't see through them. Eric, who hates speedway, sits next to me and reads a book throughout the meeting. He is oblivious to everything going on around him.

Can you see me? Go up vertically from the red helmet.
As far as is possible I am in the most comfortable position. Even so, my legs worsen as the night goes on, I'm wearing shoes etc which my legs hate. It's invariably chilly, a nightmare for the CRPS sufferer. My wheelchair is nowhere near as supportive as my chair at home. To a large extent I can 'ignore' the pain because I'm so engrossed by the meeting. Well for some of the time anyway. It is at the end of the meeting when my punishment truly begins. I can't describe the pain involved in putting my legs down, getting me up and back into the car. I do my best not to cry out, but you just can't help yourself. The journey home is horrific, every bump inducing even more pain, every time Eric brakes makes me feel worse. All I can feel is pain, not a chance of keeping my mind off it now. I honestly don't know how Eric gets me back in the house. I can't put any weight on my right foot, it feels as if it has been staked to the ground. My left isn't much better and my knees are unbearable. Every shuffle makes it worse. By now I am so worse for wear that all I want is to get back into the comfort of my chair, get the clothes that are torturing me off, and try to sleep to escape it all. No matter how wrecked I feel, I don't regret putting myself through it because I got to watch the sport I love. Oh and putting two fingers up to CRPS as well is always a bonus!

Sleep is usually in fits and starts, broken because of the pain. On waking in the morning I feel as if I've been hit by a bus. Can't function at all, just sit in a bubble of pain and exhaustion. First lot of tablets on board, barely notice a difference. The recovery begins. I am completely unable to do anything other than sit and fester. Eric has a devil of a job getting me up to sit on the commode. If I'm lucky my eyes will only be very bloodshot and feel as if there is something stuck through them. At worst I can't move my head for the pain, have to wear sunglasses because they can't tolerate light. Heat pumps out of me in waves, that's one of the downsides of pain. It goes without saying that my legs are totally off the scale. Often I can't actually tell where they are, there is just a fog of pain. Can't do anything other than sit and try to watch TV. Over the course of the next few days I gradually improve, albeit really slowly. Hopefully in time for me to do something like go in the garden, go shopping before the next meeting. The reality is that during the season my life revolves around each meeting. Literally.

So, having read the above, am I bonkers? Probably, but will it stop me? What do you think?

Wednesday, 21 March 2012

When you think it can't get any worse....

Today we had the Budget. This Government claims that we're all in this together. I'm sorry but it really doesn't feel like it from where I'm sitting. My last blog post dealt with the Welfare Reform Act, and how genuinely chronically ill and disabled people are being assessed as fit for work when anyone other than ATOS and the DWP can see that it's completely impossible. Today another friend of mine had to attend an interview with the now infamous a4e. She was placed in WRAG and they have been constantly contacting her, demanding what she was doing about getting interviews, doing voluntary work. She is taking her case to tribunal, but the wheels still grind regardless. All under the constant threat of sanctions of course. She has enough to deal with just trying to live with CRPS, plus depression, migraines and anxiety without the additional stress and worry brought about by jumping through the various hoops the DWP have set in place.

As soon as they could see her, talked to her and discuss her medical problems, her interviewer was very sympathetic and made it clear that she shouldn't have been sent and should therefore appeal against being put forward for courses. Commonsense prevails you'd think. Alas no, because my friend's response was 'what is the point when it's mandatory? '. The Job Centre Advisor didn't want to send her but had to because of the rules. So instead of leaving her CV so she could presumably be placed on appropriate courses, she left the medical reports from her GP, Pain Consultant etc.

What's so frightening about all this is that you no longer seem to be treated as a human being. At best you're a scrounger, at worst you are an inconvenience to society, the taxpayer. Someone to be pushed through a system, with the ultimate goal of saving money. Reducing the numbers and hence the amout paid out.

They've already decided that some £18bn too much is being paid for Welfare. Today George Osbourne announced that another £10bn needs to be saved. It was terrifying enough before facing transition fom IB to ESA and DLA to PIP. How can you possibly believe that you will be assessed based on your medical problems and disability when the system they've set up is geared to reducing the numbers claiming and ultimately saving enormous amounts of money? Ironically the same Budget passed on tax savings in the region of £40,000 to millionaires. Oh and froze the tax allowance of people 65 and over so that they will lose money. Funny way of all being in it together?

Sure there are scroungers out there, and they need to be dealt with, got back into work. But what about people like me, who can never hope to do any sort of work ever again. People dependent on that money, and have paid NI contributions under the assumption that when we fall on hard times the State will look after us. If, and God forbid it happens, 'they' decide that I am fit for work, I simply have no idea what we will do. I have no way of replacing the money I would lose. No way of paying for anything, the house, food, fuel and everything else.

I didn't ask to become disabled, nobody does. What sort of society treats people like this?

Sunday, 4 March 2012

Frightening times ahead...

Before I go on, let me make it clear that I am not left wing, right wing, or anything in between when it comes to politics. Like most people I read about what's going on, take a mild interest in the laws that are being passed. I always listen to the Budget to see how it affects us. Of course we all have opinions on whether a particular law is good or bad, but as a general rule, it doesn't have a life changing affect on your life. You get on with life as normal. The Welfare Reform Bill currently being forced through (now passed into law) by the Coalition Government completely blows that philosophy out of the water. The more I read the more shocked, appalled and saddened I become. It beggars belief that in the 21st Century some of the most vulnerable members of society, disabled people like myself, are being branded scroungers, the lowest of the low with no place in normal society. They claim we are a drain on resources, like leeches, taking money from the tax payer for no reason other than we can't be bothered to work.

Prior to developing CRPS I had spent many years working full time, paying my taxes, NI and pension contributions. Not for a second did I think I would be struck down, my life turned upside down, changed forever. I never thought I would become disabled, well you don't do you? Never in a million years did I think I would be totally reliant on someone else for everything. I can't get up without help, can't get dressed without help, can't prepare food for myself, can't bathe without help. Can't walk without help, can't leave the house without help, can't get in and out of my wheelchair without help. I could go on but you get the idea. Every facet of my life is now dependent on someone (namely my husband Eric) helping me, accompanying me and/or doing it for me. There is no spontaneity in my life. Life consists of a constant battle against everything that CRPS throws at me. I hate being disabled, no, I detest being disabled with every fibre of my being. I don't want to be and would do anything not to be.

The Coalition Government would have you believe that I am, like every other unemployed person in this country, a scrounger. Too many people are claiming sickness benefits when really they aren't disabled/ill enough to warrant it. They show examples on TV, people who claim they are unable to walk yet manage to run marathons. People getting every benefit under the sun, receiving goodness knows how much. They talk about getting those who can work, back to work. They also talk about providing more for those who have genuine need. Don't get me wrong, I totally agree with the principle of weeding out those people who are playing the system, claiming money they aren't entitled to. In fact I have more of a vested interest than most, because these people give real disabled people like me a bad name. Unfortunately the main cruz of this reform seems to be more about cutting the cost of the welfare bill by however many billions.  Given that fraud for Disability Living Allowance is just 0.5% this surely means that they are going to refuse a large number of genuine claimants using their new criteria with all the fallout that will cause?

I am currently in receipt of Incapacity Benefit and Disability Living Allowance. Both of these have been re-branded as ESA and PIP respectively. I will at some point go through the process of being transferred to these new benefits. The criteria have changed, as have the way they are assessed.  As I said at the start the more I have read about the Welfare Refom Bill, the more concerned I have become. The adage 'scrounger until proven otherwise' seems to be the standard, whilst the process seems geared up to reject people, who are then faced with trying to appeal.

Incapacity benefit is just that, you either qualify for it or you don't. Simple. ESA has two levels, the 'support' group, which I guess is a direct swap for IB. Here you are declared unfit for work and get the higher level of money you can get. Incidentally it's less than you get on IB but that's to be expected. After all this is a money saving exercise. To get IB you had to get 15 points based on how well or not you could carry out various tasks. In other words I filled in a form, sent it off and waited for a decision. The first time round I had a medical as well. When it was due for reassessment I filled in another form, but wasn't called for a medical. I presume this was because the Doctor I saw said that he would state that I shouldn't be called back for a medical because it was inappropriate. Too much of an ordeal. I have looked at the criteria for ESA and I should comfortably get sufficient points to be placed in the Support Group. Nothing to worry about then, simple switchover? The reality seems to be very different, the more I read and talk to other disabled people on Twitter.

There is a second group of ESA, known as the WRAG. It stands for Work Related Activity Group or something like that. If you don't get enough points to go into the Support Group you get dumped into this one. There is also a cutoff below which you don't get ESA at all. In which case you are deemed to be immediately fit for work and have to sign on. The Govt would have you belief that the WRAG group is a really supportive initiative. They will help people who could work, if given sufficient support, back to work. A noble idea surely? Sadly not. Terminally ill people who have more than six months to live are placed in this group. People undergoing chemotherapy and other treatments for cancer are placed in this group. People with progressive and chronic conditions such as mine are put in this group. People with severe mental health problems are placed in this group. We are talking about large numbers of people, like me, who struggle to live, let alone work. Not scroungers, hypochondriacs, those who can't be bothered etc.

Let me give you an example. One of the good friends I have made on Twitter is currently seeing the full horror of this new Act. For obvious reasons I will not divulge personal or extensive details about her condition. Her case though shows everything that is wrong about the WRAG of ESA and the Welfare Reform Act in general. It also shows why there are terrifying times ahead for me and every other genuinely chronically disabled person. A combination of severe psoriasis and psoriatic arthritis (affecting 95% of her joints) has reduced her to being dependent on her husband for 24/7 care. Virtually housebound, her mobility, like mine is totally compromised so she relies on a wheelchair when walking is required. Her hands and feet are particularly badly affected. In other words living day to day is not only a huge challenge but a very painful one. She was working up until she became ill, is a Doctor of Psychology, and had paid all her contributions. ATOS, the new company brought in to carry out asessments for ESA and PIP stated on her report that her condition is progressive and she will never return to work. It would seem a no-brainer that she be put in the Support Group. But no, the DWP put her in WRAG. How can this happen? What happened to the 'we will provide more for those in genuine need' rhetoric? The mind boggles how they define genuine need if she doesn't qualify. She was also told not to bother appealing as it would make no difference.

To cap it all, she was contacted by the DWP a couple of days ago to be told that having been in the WRAG group for the maximum time allowed, her money will stop at the end of April. Miraculously cured and fit for work because the time limit has been reached, nothing to do with her health and completely ignoring the fact that she is now less able to work than she was when it was first awarded. What exactly is she supposed to do now? Reapply? Sign on for Jobseekers' Allowance? Or just do nothing and lose her only source of income? I could talk about PIP, the replacement for Disability Living Allowance but the same horror stories abound, with people being turned down when it is blatantly obvious that they should receive the benefit or at a higher level.  What civilised society treats people like this?

With me facing transfer onto both ESA and PIP at some point, do you now see why I find the future so terrifying?