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?

Another epistle to the Romans

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.

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?

So much harder than I could ever have thought

So has going to Speedway been as bad as I feared?

In my last post I talked about what I go through to enjoy my passion for Speedway. So far I have been to three speedway meetings. The last one was particularly frustrating as the weather that day had been the classic 'will it won't it be rained off'. We decided to go for it as reports from the track were that they hadn't had a huge amount of rain. Unfortunately we were at the track when they decided to cancel it because of the weather just thirty minutes before the start time. So although I saw nothing, I still had to suffer the 'payback'.

It has been so much harder than in previous years. The pain increases far more during the meeting to the point that it breaks through my enjoyment, as much as I try to ignore it. Which goes to show how bad it is, because I'm loving the speedway so much. Shout myself hoarse I do! I have always lightly rested my programme board on my knee. Was amazed to find that it is now too painful. I placed a fleecy blanket over the knee. Yep, still painful. It must sound crazy to anyone reading this. If it hadn't happened in both meetings I wouldn't believe it myself! 

By the time we get back to the car I can't move my legs at all. Getting me out of the wheelchair is torture. Putting my legs down hurts like hell. I then have to deal with the shooting, stabbing pains going through my feet as I place them on the ground. Getting out of the chair and into the car involves Eric pushing me up, whilst I push on the right arm of the chair and pull myself up with my left arm. It is a real struggle and excruciatingly painful. I spend the minimum amount of time standing, instead collapse onto the car seat. Eric has to lift the fleecy cosy and swing my legs into the car, whilst I use my arms to twist the rest of me around. No way I can do it myself. 

The journey home provides yet more torture. There is no optimum speed anymore, every speed sends waves of burning pain running up and down my legs, every bump escalating the pain further. I can't feel my legs, all there is is pain. It is very disconcerting not being able to tell where your legs and feet are. Hard to describe but the best analogy I can think of is walking a dog when it's foggy. You know he's not far away but for the life of you, it's impossible to place him. I sit there doing my best not to think about my legs, but fail miserably. A journey of about 20 minutes feels like a lifetime. All I want is get back to the comfort of my chair, get the shoes and socks off that my feet detest so much. I've gone so far beyond the point where I can cope.

For the first time ever Eric had to get a neighbour to come and help get me from the car into the house. Having swung my legs round, I was unable to put my feet on the ground at all without feeling as if there was a stake being hammered through them. It's a horrible place to be mentally. All you want to do is get inside but equally making yourself move even slightly is so hard. You're stuck between a rock and a hard place. Every tiny movement will be unbearable, but the longer you take the harder and more painful it becomes. Definitely a case of mind over matter. Between the two of them they got me to my feet and we shuffled incredibly slowly towards the first of the half steps that lead into the house. Hands safely on the bars, Eric lifts my left leg onto the step. I pull myself up. One down two to go. Still being supported I shuffle forward to the next step. Again Eric lifts my leg onto the step. I pull myself up but the toe of my right shoe gets caught on the edge of the step. I'm stuck, can't do anything about it. Hannah, knowing no better grabs my foot and puts it onto the step. The pain, oh God, the pain! Just as well the bars were there supporting me because I just slumped sideways onto the right handrail, screaming in agony. To be honest the rest is a blur. 

Finally I am back in my chair, with a hot cup of tea and Bella lying across my lap, licking me. I am always guaranteed a wonderful welcome by all the dogs but Bella and I share a very special bond. She spends the vast majority of her time lying across my lap and is a huge comfort. She has an uncanny way of missing my legs when she jumps on and off or when she's on my lap. Whenever I've been out she spends ages licking me, wagging her tail. Hates it when I go out, regardless of the fact that it's a rare occurrence. Looks thoroughly miserable, bless her. Life is all the better having her in my life. Especially when I'm feeling at my worst.

Over the course of the next few days I sit in my chair slowly coming back to life with pain levels gradually reducing to their 'normal' levels. The first morning is awful. I wake up and everything hurts, well that's how it feels. Sea of pain where my legs should be. Eyes bloodshot and very painful, vision blurred. First tablets at 6am and then it's a case of sitting there in the hope that I improve. No chance! The weekend is lost to sleep and when I'm not sleeping I can do nothing but sit and fester. Can't even read to try and take my mind off the pain. Only time I get up is to use the commode. The amount of heat that pumps off my legs is astonishing, or bizarrely they may be freezing cold. One thing is for sure, CRPS throws everything it can at me, punishment for daring to go out and watch the sport I love. It is normally Tuesday when my pain levels return to anything like their normal levels. And then of course the process of preparing for the next one begins. Wednesday provides the only window of opportunity to go out, escape the prison cell that is my chair in the living room.

As there were three meetings on the trot (including the abortive one) it became increasingly difficult to recover to the point that I simply didn't manage it at all. Every day as bad as the one before. No going out, no tiny bits of exercise. Life has just been about trying to be in the best condition to go to speedway again. My CRPS has flared to the extreme. It is only now some two and a half weeks after the last meeting that it is settling. I would have written this blog post weeks ago but it was absolutely impossible. I did try to increase my slow relief morphine from 40mg to 50mg in the hope it would help. As it made little, if any difference to my pain levels I am reverting back. Senseless to take something with the extra side-effects if it isn't helping.

As I sit finishing this post, it is Tuesday. There is a speedway meeting this Friday, followed by two others in succession. I know what to expect now, but it won't stop me. My determination to go to each meeting remains as solid as ever. CRPS will just have to do it's worst. 

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?

'Educating Essex' - blast from the past

Had completely overlooked this series, 'Educating Essex', until it was mentioned on BBC Breakfast yesterday. As hubby and I were both teachers (he taught Art, I taught Physics and Science) we thought we'd have a look. Especially interesting as it was being filmed in a School in Essex.

It was the first time I'd been 'back in a school'. I know it was on the telly, but you can't help but remember your own experiences from your teaching days. I haven't been back in a school since getting CRPS and as a rule they don't make documentaries about real teaching. Programmes like Waterloo Road aren't representative of what teaching is like, but this was about real teachers, real pupils with all the problems, issues and battles I had seen or encountered first hand.

My first comment would be that nothing seems to have changed in Schools. There are still the really challenging pupils, the children who are bullying someone or being bullied themselves, the teenage pregnancies, the terrible home life that too many children have to deal with. I sat watching and could visualise pupils from my teaching days with me doing my best to help them as I watched the staff on the programme try to do. I remembered having exactly the same kind of conversations with pupils in my Science groups or tutor group. Trying to show them the way, give them a shove in the right direction. Point out what will happen if they leave School with no qualifications because they 'can't be bothered' or only want to mess about, ruining things for everyone. It reminded me just how much I really miss that. Getting a young person on side, working well, doing their best and keeping out of trouble. Making a difference, however small is why I went into teaching in the first place. It was difficult to watch, knowing that I can never do any of that again. I never got a chance to fulfil my potential, go as far in the profession as I could. In short I wasn't 'done' with teaching. CRPS ripped that away from me in an instant.

There was a Deputy Head at the School whose approach to teaching reminded me of myself in the classroom. He was more than happy to have a laugh, be silly, basically doing all he could to make history less yawn inducing and fun, whilst remaining completely in control of the group. He used the word 'cock' in an entirely appropriate manner, but of course the pupils took it a very different way. I remember using the word 'fart' with a group of year 6 pupils who were visiting the school. Appropriate to what I was talking about but using a word they wouldn't expect a teacher to use. They loved it of course!

It's a wonderful feeling during a lesson when you've got a group of pupils really engaged, they're coming along for the ride, hanging on your coattails. Enjoying the lesson as much as you are delivering it. Lots of banter. You get the idea. Most importantly they are learning without really realising they are. I miss that terribly. The programme brought back memories that I've buried somewhere in the dark recesses of my brain, because there is no way I could ever hope to teach again. Living day to day is hard enough. It annoys me intensely when you hear on the news about people being on benefits when they could work, are just scroungers and cheats. I'd give anything to be back in a classroom again. The fact that I can't hurts. Really hurts!

I would like to think that I'd have become a similar Deputy Head to the one in that programme. Truth is we'll never know....