Will

Hopefully, today is the first day of the rest of my life. No, there can be no hopefully about it. I must think positively, I must be positive. Perhaps that is half the battle.

So, today is the first day of the rest of my life; I know because I have decided that something needs to change, my life needs to change, for the better.

For six years now my life has been dominated by one thing, one measly thing that you, or I, cannot see or hear but maybe, just maybe, I can learn to control.

It is something that I can most definitely feel: pain, chronic pain; like a raw, nagging toothache that seems to have gone on forever, at times rising and clawing away at my nerves, like a sore, open and burst blister touched by sea water for the first time.

Or childbirth, maybe, for I guess that only a woman who has gone through that can appreciate that comparison and, in any case, as a man I doubt that I would get any compassion for that comparison.

Anyway, I digress.

The pain is there, always, from morning to night and even through the night too, rousing me in my sleep as I turn, groan and feel it. It is only becalmed by boringness and good behaviour, like a prisoner seeking parole; and that is a good analogy, the prisoner I feel that I am, the pain imprisoning me into this life that I am leading, barely one, just existing; and a prisoner in my own home too, or so it feels, as each trip out leads to pain, whether from walking or travelling by car, though the latter is easier than the latter.

The pain dominates my life, every second of every minute of every hour of every day.

 

I do something, almost anything, and I feel the pain rising, nagging away at me, telling me to stop or it will hurt even more. So my life is a quandary: I do nothing, I am bored; I do something, almost anything, from walking to sitting and standing to bending, I am in more pain.

I try to do less activities that hurt but do more activities that keep my mind active, or at least occupied: reading the newspaper (sent to my kindle to avoid having to go to the shop and, most definitely not one of those papers that belittle the plight of those disabled or on benefits); surfing the internet; watching sport and good TV but most definitely not mind exploding simple and mood depressingly condescending daytime TV; writing (yes, this, a blog about my pain, my life, my hope!).

No. That life is no more. I must be positive. I will do more. I will get out more. I will no longer feel like a prisoner, locked in by my wife as she goes to work each morning.

I will take on absolutely the pacing regime that the pain clinic has suggested. I will exercise through pain and tiredness and lack of motivation. I will use the prescribed relaxation and distraction techniques. I will reduce the amount of medication that I take to control the pain before it kills me slowly (as it seems to be doing). I will pace to the second, even if it kills me mentally.

I will, I will, I will!

My Story (Part 4): Somehow

 

Often I feel that it is my situation, my life, which upsets me more than the pain itself.

It is the loss of freedom that most upsets me, always having to be aware of the pain and always having to consider the effect my actions will have on it. As a consequence, I feel that I am not really living anymore; I just exist, trying to get through each day without aggravating the pain so much that I cannot do the things I have to do, or really want to do.

All the while I have this dread of the pain, knowing that the pain will come, like a spider crawling ever closer to someone who suffers from arachnophobia.

Normally, away from this blog, I do not complain about the pain, or my situation; that is just not me. As my wife would no doubt tell you, it is my stubbornness, my sheer will to not give in to things that I dislike or disagree with, like the pain, that has got me this far.

So, most of the time, I hide my pain, my feelings and my thoughts and just get on with life; at least I have until now. Somehow I have kept on going, having faith that everything will be okay. Somehow I have kept on fighting, taking one day at a time. Somehow, I have never, ever, given up. It is how I have got through the last six years. If I had not done those things, I do not know how I would have coped with what happened, or how I have continued to cope to this day.

I dream of a way out, not of the pain, but the situation. I can accept the pain now; I have come to do so, it having been with me for so long. I cannot accept the situation. I just want a normal life. I want my wife and I to have children, for us to get a dog, and lead a normal family life; and all that entails.

But...

But life for me now is a constant struggle, to fight the pain to do what I have to do let alone want to do. I do not know how we will, one day, maybe soon, have children when sometimes I can barely look after myself. I know that my wife, we and maybe I have the love for children but I do not know if we will have the resources, in any way, to do so whilst my pain continues.

I have shown that I am resilient over the last six years, but I do not know if I have the resilience to take on responsibility for others. But somehow I will. Somehow I will have the faith. Somehow I will keep fighting. Somehow I will never, ever, give up. I just do not know whether or not financially we will ever be able to do so. Somehow, that thought saddens me more than anything else.

 

My Story (Part 3): Unemployed, Unemployable.

When the pain began I was working for a government agency, eighteen months after leaving university with a good level law degree. I felt like the world was, as they say, whoever they are, that the world was my oyster, there for me to conquer or at least make something of myself.

But then the pain came.

I was working on a contractor basis, so if I did not work I did not get paid; and so I carried on working, and most if not all of the leave that I took was to have treatment for the pain.

And work was the worst thing for me: sitting at a desk for hours when even minutes can inflame the pain so that it grows and grows. Somehow I managed to carry on working, my employer being flexible so that I could work from home sometimes three, four or five days a week.

But even then work was a still struggle: the end of a day working I was mentally and physically shattered, having fought the pain all day long. Weekends came and went with me doing very little, resting and trying to recover from previous days working before I had to work again.

 

Life became so hard, almost unbearable.

But I continued to work where I did because I knew that I could not leave; I could not get another job whilst I suffered the pain, even though it caused me more pain and I began to hate it (who likes anything that causes them pain?). Work became my life and yet work was hurting me.

I felt trapped. I was trapped. I could not sit down and yet my work was a desk job; it was all I knew, is still all I know. In the state I was in I did not know what else I could do, or who else would employ me.

Over two years ago now the worst happened: my work contract finished and I was left to find another job, to somehow carry on working. I felt, I knew, that I was unemployed, unemployable.

Still, I tried hard to find another job, though my skillset and experience was rare, public sector based at a time when the public sector was not recruiting. And yet I really didn’t feel able to work even if I did get another job. In all honesty I still don’t. I am unemployed, unemployable.

I fought hard to remain positive, to keep on looking for work, and to keep believing that I could work; and so I didn’t ‘sign on’ immediately, waiting months to do so, until I realised we needed the money.

We didn’t want to claim benefits, not one penny. We didn’t want that shame, because that is what it is, a stigma, with all the bad publicity received by benefits and claimants.

Our backgrounds are strong, working to middle class, self-sufficient. We do not claim, not out of snobbery, but pride. We think we don’t need to, that they do not apply to us. We think: we can find work, we can earn good money, we can pay our way, and we can give our children the future’s they would like.

Our family and friends told us to claim, that I had paid my taxes and it is fair that I should now do so, needing the money; but I didn’t want to be one of those people the press, the government, talks about: a benefit scrounger and a workshy malingerer.

And I didn’t want that small amount of money that comprises those benefits. People talk as if they are a king’s ransom but they are not, I can assure you. I didn’t feel that the pittance on offer was worth the loss of pride, the stigma, of claiming for any benefits.

But, in the end, it was a case of need before pride.

 

 

The No Work Programme

As the government announces that just 2.5% of people on its flagship Work Programme (WP) remain in employment after six months, noticeably and ridiculously less than the 5% who would have remained in employment without the programme, here is my own experience of the WP:

I suffer from a disability that severely affects my ability to work. I suffer from chronic pain, levels of which vary on a day to day basis and are dependent on how I manage my activities. As such, it is questionable whether or not even if I get a job I can sustain it beyond one day, one week or one month.

Despite doubts as to whether or not I could work, I had been looking for work actively and aggressively for months before I signed on, hoping that I could find a job that would provide me with enough money to live off but sufficient rest time to manage my condition (as my previous, very flexible job allowed for).

Having told the Job Centre staff of my disability, I was advised that I was applicable for the Work Programme, without being told exactly what it entails.

In my first interview with the WP Provider (WPP), I explained my situation to the advisor, who then advised me to ‘keep looking for jobs’.

Earning her wage there then. Yes, sarcasm. With the WP humour is the only thing that keeps you sane.

At no point did the WPP do anything actively to assist me in getting a job, being merely a kind of job coach, encouraging me to find work.

On explaining to the WPP my doubts as to my ability to sustain work, I suggested retraining to overcome the barrier that my then skillset provided for, that I had always been an office-based employee and that I would struggle to work on that basis. 

In response, the WPP suggested that I become self-employed, advertising my skills in well… very little, as I have few marketable skills, to which the WPP further suggested that the WPP may be in a position to pay, up to £1,000, for some training to firm up my skills in order to make the self-employment more likely to succeed and be sustainable in the long term.

The WPP also advised me of a new self-employment allowance available to those coming off Jobseeker’s Allowance (JSA) and starting self-employment, called the New Enterprise Allowance (NEA).

Having nothing to lose, having only received a limited amount of contribution-based JSA, and the NEA having no such limitation, I became self-employed and commenced looking for work on that basis.

So, all well and good. Or, not.

Sure enough, after starting work on a self-employed basis, I asked the WPP for the money for the training course, to which I was advised that there were insufficient funds to pay for it, but as I had been promised some money that they would provide me with a token £100, nowhere near enough to cover costs for retraining or any kind of skills development to make my self-employment successful.

And, sure enough, again, it being more than apparent that I do not have enough marketable skills to support being self-employed, and with my health problems continuing to flare up because I am continuously seeking work as part of my self-employment, I have only actually managed to obtain and work three days in six months.

And so, I am now signed off for three months, and back on benefits.

What a waste of time, money and effort. Hence: The No Work Programme.

 

My Story (Part 2): Painful, Wasteful Days

 

My disability, my life, is chronic pain.

 

The pain is constant and nagging or searing and nauseous. Either way it is always eating away at my body and my mind, all day and every day; I only seem to get the briefest glimpses of respite and that is only an easing of the pain rather than it gone completely.

The more I do the more pain I am in, whether it is walking or sitting or travelling or housework.

 

Each time I do more I risk the pain flaring up so that anything I do hurts, really hurts, not just like that nagging toothache like pain. It is the kind of pain that makes you writhe on the floor in agony and then feel the need to reach for an ever increasing strength and amount of painkillers.

At the times of flare up any movement is a struggle and I need help with the simplest things, like getting dressed or making food or drink. It is times like these that I feel like a burden on my wife.

The pain is at its best when I do practically nothing; but then I feel that I am just wasting my life away. But I know what I need to do, so now a good day for me is a combination of rest and exercise, so that the pain will ease or at the least not be aggravated.

But, again, with sitting aggravating the pain, I must rest lying down, so that is what my life now seems to revolve around, as I lie down reading books, newspapers, watching television and writing a random blog…

And yet, despite all the lying around, I am never truly relaxed and comfortable: I am always aware of the pain and the need to move because if I do not the lying down will increase the pain too.

I must do particular exercises to ease and control the pain, as I have done for five years now, a combination of yoga, stretching, strengthening and cardiovascular exercise.

In addition to my daytime painkillers, I take further medication each night in order to ease the pain and help me sleep; if I do not, I have trouble sleeping. When the pain is at its worse I take more tablets and still that is not enough, each turn in bed aggravating the pain and waking me.

I feel, or maybe I know but I do not wish to recognise, that I will be lying down, exercising and taking ever increasing doses of medication for the rest of my life.

 

 

My Story (Part1): The Welfare Fate

Every person on Incapacity Benefit is a cheat, a scrounger and a workshy malingerer.

Or that is what every benefit claimant seems to be if you believe what you read, see or hear in some of our media, particularly the right-wing tabloids.

Or that is what every benefit claimant seems to be if you believe some of the words used by this coalition government in stating that it will, not may, reduce the welfare budget by as much as £10bn per year.

It always seems as if no one stops to think that but for that unknown and unpredictable entity of fate, it could be them incapacitated and claiming benefits.

I know, for I went from being a fit and healthy twenty-eight year old law graduate working for a governmental agency to a thirty-five year old unemployed nobody with a disability.

My problems began four years ago with a meagre infection that three doctors misdiagnosed; it was only when I saw the fourth one (and received a proper examination) that it was diagnosed correctly, a particular type of infection requiring a particular type of treatment.

I took that course of treatment, but still the pain persisted. I was prescribed different medications; some made me feel worse, all were to no avail.

I had a scan and saw a specialist, who found the resolved infection but said that it was nothing to concern me; yet still the pain persisted.

Some nine months after the first twinge of pain, I saw a pain specialist: he said that the nerves had been aggravated and that I needed specialist treatment.

Over the next three years I had five courses of treatment into my spine, botulism toxin and radiofrequency treatment, plus what seemed like an endless variety of medication.

Each treatment was like being tortured by a James Bond villain; I laid there trying to block out the pain, trying to think of beautiful sunny days, on a beach with my family, trying to fight the natural urge to cry and scream as the pain intensified.

After each course of treatment I had brief moments of respite, before that faded and I was back to normal, with differing levels of constant pain.

Two years ago now I saw the pain specialist for the last time: he told me he could not do anymore treatment because it could cause more damage to the nerves, thus do more damage than good.

 

I came to accept pain as part of my life.

I was twenty-nine years old when the pain began, a recent law graduate with good work experience. I felt like I could be something, do anything.

I could go wherever I wanted, whenever I wanted. I could travel; go to the theatre, gigs, the football, the cricket. I felt at my peak, as a man, as a human. I felt strong, mentally, physically, emotionally.

 

I felt free from teenage angst but young enough to not be worn down by life. I felt ready to take the burden of life from my family.

Now I am thirty-five years old, less fit, less agile, less strong, mentally and physically, with a bulging stomach having replaced one that was trim. It may come to all men, and it may have happened in any case, but I feel that it has come too soon, and in a manner beyond my control.

 

Still, I guess that is fate for you.

What is Disability Revolution?

Introduction

My life was not meant to be like this, to turn out this way; perhaps that is the case for everyone but I went from being a fit and healthy twenty-eight year old law graduate working for a governmental agency to a thirty-five year old unemployed nobody with a disability.

The Revolution of a Life

If you cannot tell from my words above, having a disability hurts me mentally as well as physically: so not only have I had to come to terms with living with a disability but I have had to come to terms with having the ‘disability’ label too. But, perhaps, now or from now on, everything will change: this blog will be a revolution of my thoughts, from denial to acceptance and beyond, that I can and I will realise my potential because of my disability rather than despite it.

 

The Revolution of Pain Management

My disability is chronic pain; silently hidden but constantly violent, like a rabid rodent crawling through my insides, aggravatingly gnawing at me, making me reliant on medication and ripping out hope of freedom, happiness, a life; or so I thought. For Disability Revolution will also be a diary of my attempt to overcome the pain, or at least tame it: taking on and living to a new program, one of absolute pacing, rest (but not too much), exercise and using distraction and relaxation techniques.

 

The Revolution of Society

As I have battled myself to accept my fate (as only you can do, for that is what fate is), so too have I had to fight to overcome the barriers, challenges and stigma of the disability ‘label’, even with what I felt was having a favourable background. So Disability Revolution will be the voice of anyone with a disability, to revolutionise the widely held views, or what some might say prejudices, on disability: to prove that disability is nothing but a mere weakness, difference, a foible of humanity.

 

The Revolution of Politics

If my disability has taught me anything, it is that it could strike anyone at any moment; I know because it happened to me, though you would not think so from the shameful rhetoric of this coalition government and its right-wing media accomplices. So Disability Revolution will campaign against the tyranny raging against those with disability, who label everyone with a disability and claiming benefits as a malingerer, using rare examples of abuse of the system as the norm rather than the rarity they are.

 

Conclusion

So… ‘I’m gonna start a revolution from my bed…’