Fit for Nothing

Saturday 18/5/13 – fit for nothing

By 1pm the nerve pain is so heightened it takes my everything to force my body out to take Daithí for a walk. On returning home and irrigated my non-functioning bowel and crash on the sofa.

Pain so intensely burning and issuing the right side of my body with repetitive electric shocks I am unable to fall asleep even though my body longs for sleep and my mind is in agreement, desperate to be free of this curs’id pain. I am in such turmoil that I want to rip my right side clean off and purge me of the dreadful pain. I wonder if I had the left side of my brain cut away would it make the pain cease as in the end it is the brain that registers the pain?

I have so much to do with the exhibition only a few weeks away and I need to critique the 6 reports from Hyde Martlet and return my feedback by Sunday night, as I will be at the enterprise training Monday. But no amount of will-power or self motivation can force my body into action. I may just face it – the right side of my body it temporarily paralysed by the nerve pain and each time I try to get up from lying down nothing happens – I am stuck here for what feels like eternity and I don’t know when it will end as it is not that I can pop some painkillers and wait for their action to kick in. No I might as well take smarties as painkillers – at least I would enjoy the taste!

Is it not punishment enough to feel as though you are sitting on live wire being electrically shocked every waking moment, while also contending with a severely disfunctioning gut that every time food enters it goes into a frenzy of spasms that feel as though someone is inside you ringing out your gut like a dish cloth, along with reflux, heartburn and nausea meaning forcing down food when your gut is rebelling and telling you it wants to throw up but knowing you must ignore the severe nausea and gut spasming reaction to food or else you will wither away and die, without being punished further by this government for not being well enough to work by cutting a quarter of your annual tax benefit that you must find from your measly incapacity benefit and Disability Living Allowance, supposedly to fund the extra cost of living with chronic ill-health and impairment when in reality you must give it all to the council towards your care support and this is before the extra cost of having to consume a free-from diet which is significantly more expensive to normal food. For example a 400g of gluten-free bread is on average of £2.99 while you can get a loaf made from wheat that’s twice that size for as little as £1.

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Why does my gut reject the natural substrates

Why does my gut reject the natural substrates intended for digestion and absorption? Why does it so aggressively fail to function as it ought? Why does it send food creeping back up my throat, so I need to keep my mouth tight shut in case it comes all the way up and out my mouth? Why is it that as soon as I put a morsel of food into my gut it seems to immediately walk out and strike? What’s with the gurgling noises in my throat? Why on eating does my gut have to make me so terribly nauseas and wishing I could actually puck and have it over with? Why is it that my gut fails to propel food along, actively digest and absorb it, leaving me lethargic and weighed down, doubled in two with painful spasms, fit for nothing but to lie down as my body despairs at not receiving a reliable source of fuel as and when I need it to adequately function, despite having done my bit in eating the food? What of the extreme pounding pain in the middle of my chest, penetrating right through me my inners to my back so strong it pains to breathe? The bottom line – I must force food down my gut and keep doing so despite the severe nausea, so bad I feel I’m going to puck, the food just swallowed creeping back my throat, colliding with the last mouthful swallowed,  the buckling pain, the thought of food never mind the sight of it making my stomach churn all the more and the feeling of being so full I can’t eat another morsel yet I must because if I listened to my gut I would waste away to nothing and be dead! I long for the enjoyment most people get out of eating!

Veiled in Labour skin!

What is Ed Miliband and labour playing at – considering over-hauling the Benefits System so that what you get depends on what you have already contributed to the Public Purse, with those contributing more being paid a higher amount of benefit to those who have contributed less?

The whole remit of the Benefit System is supposed to be to support the most needy, yet here we have a so-called Socialist Party considering awarding more to the rich and less to the poor, who most need it. Is this proposal a mere point scoring exercise rather than standing up for and doing the right thing.

Are those who have been born with disability or longterm ill-health or those left disabled as young adults and are unable to work to be punished by receiving a smaller amount of benefits to those who’ve had ample years and a big salary who’ve paid more in? How is that fair? Haven’t they been unfortunate enough, through circumstances beyond their control to endure a life filled with insurmountable challenges and pain, without being made to struggle even more by being given a lower basic benefit , when there is nothing they can do to change this fact, and their needs and the costs of those extra essential needs are greater to those of non-disabled?

And what of the low paid worker who works long hours doing hard work for little money getting less support from the state to someone who happens to be in a well paid job? often it is low paid sectors that are vital to life! Can you imagine the disease and infection that would flourish if we no longer had the bin-men, workers that clean rubbish off our streets and those that look after our sewers? Yet why are they little appreciated and poorly pay?

Instantly, I had butterflies and felt I was going to throw up!

I didn’t need to even open the envelope. I just knew from the distinctive dirty brown coloured envelope, the splotchy heavily inked print and the off-white paper, the type that somewhat resembled the yellow tinge of aged old paper that it was from the Dept. of Work and Pensions.

Immediately, I my stomach churned, my gut tightened and I felt I was about to throw up. A shiver ran down my spine and my limbs trembled, panicked that this was it, the dreaded time, I have been worrying about ever since the work assessments began and ill people were being deemed fit for work, of being told that I am being taken off incapacity benefit and income support and must be assessed to determine if I am deemed fit for work, deemed fit for work with support or remain in the category deemed too ill to work.

oh Shit!

oh Shit!

how can a one-off assessment suffice to determine the former when my condition varies so much? I can be able to function reasonably one minute but shortly after lying stretched out in agony, temporarily paralysed!

Part of me wants to leave it unopened, throw it in the bin and pretend I never received it. But, at the same time, I knew the dreaded thing was not going to go away, even if I discarded the curs’d envelope. I also fleetingly wondered but what if I’m panicking over nothing and like all the letters from the DWP I had received in past year or two it had nothing to do with the Capacity to Work Assessment. It could be just telling me the amount of money I would receive each week for the coming Tax year, from April.

Unable to feel in control, till I know what is in the letter, I open it by the front door as Mona removes my shoes for me. It is to be sure the curs’d letter I have been dreading. My heart sinks, as I continue to read, all the time feeling ever more panicked. I need to remind myself to take deep, slow breathes, to stave off hyperventilation and a full-blown panic attack.

Typical, I thought, all the dreaded assessments would come at the same time, when I find it almost impossible to cope mentally with one at a time, even. This Tuesday, 12th March 2013, I am to have my ILF and Social Services care review and  I am dreading being told they have down-graded my level of need and so would be getting less support and worst still, what is to happen come March 2015 when ILF is dissolved? And the capacity to work assessment people are to phone within the next two weeks to verify I am truly who I say I am,  before posting out a thesis of a form, I must fill in immediately asking about my disabilities. But how can a conversation down the telephone be proof enough of me being who I say I am?

Oh, how I sometimes wish I could vanish into thin air, leaving absolutely no trace that I ever did exist to begin with, leaving this world and breaking free of all its unfairness, the greedy rich getting ever richer, with no guilt felt that the poor are getting poorer to maintain their privileged life of greed for the selected few including our govrnment!

feeling like the naughty school kid

Wednesday 30/01/13 – always something

“shit!” I just realised I’d left the broken denture back at the flat when we were not far from the dentist’s. How could I be so stupid when the broken denture was the reason for this latest visit? This is what never-ending nerve pain does to your brain – before the pain I was the one who always remembered birthdays but now I forget the most trivial of things.

I had only had the denture fitted a few hours when I dropped it and it broke in two. I was furious with myself. How was it that I have such ’butter-fingers’? I am so quick to fault myself as though I have some form of inherent flaw when what’s to blame is the nerve pain, making my hands tremble as I feel I am being zapped with a tazor gun from the inside.

I sit for almost an hour in the dentist’s waiting room. The wooden benches attached around the walls, might look rather chic but are so dame uncomfortable even for those not already plagued with pain. No matter which way or how much I shift my position the pain I feel in my lower back and right buttock shooting down along the leg into my foot is screaming out at me. I don’t want to stand up even though that is likely to make the pain a tiny bit more bearable.

I daren’t do so, as standing when seats are available tends to attract attention, people urged to enquire as why I am standing. Many seem perplexed when I suggest standing is less painful. People generally believe sitting is a way of resting our weary bodies when tired, in pain or ill. My standing and yet needing a walking stick seems to make people feel uneasy and I start worrying whether they see me as a fraud or trying to act tough. Standing up in front of an empty chair, brings me back to the classroom, made to stand by the teacher for being naughty, if I can’t lean on the back of the chair or a wall, as is the case in my dentist’s waiting room.

I feel my eyes getting droopy and I have to fight the urge of toppling to the floor, having passed out with the pain. Why couldn’t lying be the default and not sitting, when it comes to taking the weight of our feet?

True enough I am only allowed to have the denture repaired on the NHS. Well at least I won’t need come back in person and can have someone drop the broken denture at the surgery to be sent off to the lab. I just hope where they glue it back together is not left with a rough surface as this will feel like sandpaper rubbing my gum due to the hypersensitivity caused by nerve pain.

I get home and have no choice but to lie down and try to sleep for a bit if I was not to pass out. The pain is so in my face I can’t sleep despite trying my hardess to focus on the heat of the wheat-bag I have against my lower back and buttock. I wish someone would hit a blow to my head with a sledge hammer and knock me out cold, only coming round when the pain is that bit more bearable and I have regained some energy to cope with my parasite!