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.

Therapy Dog or Assistance Dog

We wouldn’t deprive someone without the use of their legs of a wheelchair in public places so why then do we tolerate that many people with mental health conditions are imprisoned in their homes’ because having a dog walk along by their side as an aid to removing the anxiety, fear and panic felt of what is outside the home, by giving the person the confidence that people won’t get too close to tolerate nor will the person be the focus of attention in social encounters, the dog will, and knowing that they have a plausible reason to remove themselves should something prove too unbearable is classified as a Therapy Dog, with the same restrictions in public spaces as pet dogs, not an assistance dog, permitted in public places?

How is the former so different to the medical detection, guide or hearing dogs, so they get official registration as assistance dogs, while the mental health dog that does not perform a visually obvious physical task cannot get official registration as an assistance dog?

I am not saying that all people with mental health conditions should be allowed a mental health assistance dog nor am I condoning people passing off their pet dog as such an assistant dog but rather that some people with mental health conditions could regain independence and become active members of society again by having highly trained dogs that have been through a quality training programme that teaches the dogs good self-control, basic obedience and appropriate public etiquette, in accordance to the high standard laid down by the Assistance Dog EU and the International Association of Assistance dogs, which is non-negotiable.

what do you have to say about this?

Limited Capacity to work questionnaire

A child can lift half a litre of liquid in a carton or even a full one at that, can use a keyboard and mouse, pick up and use a pen or pencil, pick up a pound coin, put something in their coat pocket and raise their arm above their heads does that make them ‘fit for work’ and so should be out seeking a job?

Why ask whether I can lift a carton of liquid? Are they hoping to find me work pouring milk into people’s tea-cups in an office say? They needn’t ask me to make and pour the tea as I would likely pour the water beside the cup as opposed to into it or if I do manage to hit on getting it in the cup, my hand would likely be shaking so much that the boiling water splatters all over me and those in close vicinity! Where are they planning to source such a job?

Where is the pound coin that needs picking up –
Is it on the table, on the floor or on top of a mountain while I am at the foot of the mountain and looking up?

why is it that those on state benefits are being ostracised why our banks are continuing to be in receipt of state welfare? should the heads of our banks be assessed for eligibility for this state welfare their banks receive? As if!

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!

Pissed-Off

I’m pissed-off that I wake up with such a debilitating throbbing, pounding headache right across my forehead, just above my eyes, along with the feeling of an excessive pressure behind my eyes with something trying to bull-doze my eyes out of their sockets while another force tries to bull-doze them back in. Even a tiny flicker of daylight is like being poked in the eyes with needles so I am obliged to keep them fast shut.

The burning pain spreading out from my nose under my eyes radiates into my ears like ear-ache makes me want to rip my face apart in hope of letting the pain escape.. It is as though my entire head is exploding over and over showing no signs of ending any time soon. I can barely raise my head when my PA arrives with two paracetamol which I know won’t do much but I can’t take Ibuprofen till I eat but I can’t even sit up so I won’t be having breakfast any time soon!

The chilled eye mask doesn’t give much relief as it is on ire in no time soaking up  the intense heat from my body. I feel I’m on fire. It is 10.30am when I finally make it up for breakfast. The intensity of my facial pain is so grave that I can’t think and it takes all my energy to cope with the pain and take forever to finish brakfast.

I have so much to get on with but all I manage is to take a few photos of the ‘locked-in’ sculpture needed to record progress. This takes two hours because my body is only responding at a snail’s pace.

This shouldn’t be happening,   I’m only 35 and many old age pensioners have health enough to do more than I can and that is just not right. I ought to be working and paying my taxes to support the OAP not depending on others’ taxes to enable me to live. It is though I consist of a young head on old granny shoulders/I have the body of an old grannie and the mind of a much younger body. I feel I am a young woman imprisioned in an old grannie’s body, and thus deprived of my free-will to live the life of the younger woman that I am. have so much needing doing and to be getting on but own again my physical body lets me down and prevents me acting on my will and determination to finish the sculpture and work on setting up ‘Lifeline Support’.

It’s so frustrating that just doing the everyday living tasks such as food shopping and walking the dog, that most do on top of paid work and pursuing their interests, is enough to floor me, forcing me to lie down before I fall down my body is so unstable and weak from the extent of the electrical shock like pain that zaps my every cell on the right side of my body. What is even more annoying is that the pain doesn’t ease on giving in and lying down. No, it continues to rage and no amount of trying can I fall asleep as my body cries out for and needs but doesn’t get, instead I am forced to live every moment of my dire pain with no luck that sleep will bring me the escape I so need from what must feel like to be continuously zapped with a tazer gun.

It’s so not fair that I have no physical or mental capacity to venture on with the numerous projects that I so passionately want to push on with.

Should I let complete go of control of the food shopping, handing it over to my PAs while I focus on my interests but then I won’t get the rewards on my Partnership card and the money off vouchers in exchange as I am not going to give my PAs my PIN. How can I tell them what fish I want when that decision usually depends on what fish is on offer that day? Are PAs going to take the care to choose the freshest of the fish, chicken, fruit and vegtables and what if what I request is not there they aren’t going to know what to substitute it with and so end up without anything?

Would online be the answer but I found it took longer online but if I saved my shopping to favourites would that take the hasstle of searching every time? But would delivery cost be more than cost of my petrol, especially as I would be driving by the shops to get to chiro anyhow? Again could I trust the staff choosing my order? Probably less than my PAs I reckon!

And now I need to crash once more

manage to be on time

When I awake in the morning the connection between my brain and right side is broken and I am temporarily paralysed and can’t get out of bed all because my nerve pain has clogged up the network. It takes much mental battling and time to put enough of it back together to get my body moving enough to sit up in bed with the help of my Personal Assistant and then the hard work starts again to find and link the necessary nerves to enable my legs to move and swing my body out of bed. if asked how long this takes all I can say is ‘how long is a piece of string?’ it varies so much, with no identifiable factors that influence the time required. his makes me more often late than not for early morning appointments.
knowing I had a 9.30am appointment I opt to sleep on the sofa hoping to trick my body into thinking it was only napping and must resist the destructive powers of my never pain.  Wow manage to get up shortly after 07.30am and out on time to be at physio for 09.30am – a miracle!  Was sleeping on the sofa in the living room what enabled me to get up without too much battling to reconnect the network of nerves? Was this arousal aided by all the clattering coming from the kitchen? Or was it purely one of my better mornings and the brain and right side had some connection on waking? Do I repeat this tactic again next time or just sleep where I’m supposed to sleep? Sometimes, I wish I didn’t always over-analyse everything!
the physio has me attempt to bring the right side of my pelvis down but not the left. No matter how hard I focus and concentrate my mind on this task, even conjuring up a mental imagine of my right side pressing down and yet my right side just ain’t shifting. There just isn’t a connection. It feels as though I’m trying to use brain power to some innate object sitting away from me. Mentally exhausted in a tiny number of minutes I lose all concentration and my body goes slack! The physio suggests placing a prop under the left side of my pelvis hoping to trick the right side into pressing down independent of the left. That fails too because the moment I try to get the right side to step in line and obey my left side presses down into the prop, till it practically bottoms-out.  So no luck there either.
The physio is good and decides to take a different tactic. I’m to stand tall keeping my posture perfectly straight and kick the right leg out behind me. I get it to do this exercise or so I believed till the physio demonstrated how I achieved this not through the muscles on the right side of my lower back but by leaning my torso forward. So what other ways has my body found that enables me to move the right side without the correct muscles working?
In the end I manage to make the tiniest connection and my right leg shakes and wobbles like jelly. So there is a connection but it will take painstaking amount of effort and practice to strengthen these muscles on the right side of lower back and no guarantee that all my hard work will pay-off. To think there is every possibility that these muscles never get stronger having spent all that time and effort in putting in the hard slog for nothing when I could have used that time and energy undertaking something I wish to do, knowing I will have something to show at the end of it.
I feel a bit like this foal as my leg wobbles!
I empathise with this little fella's struggles

I empathise with this little fella’s struggles

How am I to continue to fight against my inner thoughts of there being no point practicing the exercises due to skepticism at it making any difference – eleven years too late, or it will be in seven more days? I can’t help thinking I’d be better off spending the time doing something I know I can achieve or I enjoy?

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!