Tag Archives: tribunal

Ripping The Scars That Bleed

When people say “It won’t be as bad as you think“… I wonder if they ever imagine that it won’t be because it’s simply so much worse than anyone can imagine?

That tribunal was a nightmare. One that just would never seem to end. It has now… but it still haunts me, days later. I felt… molested. They tore into every part of me without emotion, care, or regard for my wellbeing. I felt presented to them so they could eye me, judge me, penetrate my very soul.

It was just horrible. Intolerable. It felt they tore inside my soul and ripped out everything inside. Everything I never wanted to think about again. Everything I had spent a long time trying to forget. Everything that I couldn’t think of again if I wanted to continue to survive.

They wanted to know things I didn’t want to remember, to think about, analyse… I’d already done that so many times in the past 20 months since this started, I did not want to do it again. I had no therapist to get through it, I had no therapist to return to. I had no one to help me the first time around, and no one there to help me deal with the memories. I felt like I had finally got to a place where I could forget the details and accept where I was (for now, until I get better). Now, they wanted to rip those scars open and have me bleed over their pristine giant table.

They dredged the dark waters and poured out all monsters back into my soul. Coldheartedly. Devoid of emotion. Without wanting my own to insult theirs.

They looked into every weakness, every symptom, every difficulty, every secret, every memory of every moment of pain. I was laid bare in every way in front of them. I felt I had been completely ripped apart and they were judging the pieces they had taken, like butchers looking at what quality meat they had ripped from a carcass. Except I wasn’t dead… but right then, I wished I was.

I tried not to cry. I couldn’t look up, or look at them. The tears kept wanting to come. I was tired. Frightened. Speaking and thinking of upsetting things. All I could feel was their eyes on me, their disapproval of such a thing. I tried not to cry. I think I managed it. But I think now I wish I had, then I probably wouldn’t have had a horrible meltdown later.

 

Humiliating. Traumatising. Demeaning.

Having to think about every little detail whilst your fuzzy mind stumbles through memories better forgotten.

Having to think about every little detail that has traumatised your mind for 18 months. Every detail that you have tried hard to forget, so that horror no longer scars your life, your emotions or your mind.

I had a meltdown. It wasn’t until later in the day, until I was home. I just wasn’t able to deal with it all anymore – it all just kept going round and round in my mind.

Because of the meds? Because of my memory problems? Because I was beyond exhausted? Because I was so beyond anxious even before the day even came and now it was over the hill and past the horizon of awful? Because of the memories it dredged up with the minutiae of details? Because of my “condition”? (I still can’t really say the “A” word….)

My guess? All of them. And more.

 

It was like being somewhere that combines the head teacher’s office and Simon Cowell’s X-Factor panel. Only far more traumatising, humiliating, demeaning, and terrifying. I’ve done the Simon Cowell thing, I’ve done all the audition-panel things. I’ve sung solo in front of 1200 and alongside others in front of over 1500. This was nothing like that.

There was a room. It was so white it was horrible, so bright with sharp fluorescent lights it made me feel sick. It was a large room with a large table in the centre. On the other side were three quite old, stern-looking women. One was a judge, one was a doctor, and one was some kind of disability specialist. They were frightening in their imposing energy… I just felt myself wilt in fear in front of them. I kept my head down. I tried to speak to them, but… there are no words. I just couldn’t do it.

I had my friend but no advocate. No one to truly help me. I was alone.

Understanding Pain

They kept on asking me different questions, bouncing around with them, so I couldn’t keep my thoughts straight. I would try and answer, then forget the question, just think what I was thinking about and move off on a tangent. They kept asking me about distances I could walk over a year ago – how should I know? When you can’t even remember the last question posed before that, how is it possible to remember something from so long ago? They asked how far, distances in years, or miles, or meters, or even length of houses… I could never work out distances and now I don’t even have spacial awareness to the point that I couldn’t reference the length of 20 houses, or 100. I don’t even remember where places are anymore, and I always have to ask my friend which way we’re going and how to anywhere, because I no longer remember.

 

Inane question after inane question on historical facts kept coming. I couldn’t understand why now wasn’t relevant, and the judge mentioned that they could only take facts up to January 2015 because of the date of the last assessment. I was already in this state by then, so it was hardly any different to now, but it also meant trying to think back to a year ago and more. They wanted specifics… and I could only talk in disjointed vague memories better left forgotten. I honestly had no idea what I was saying or talking about.

The doctor even asked me that age-old gem that always really riles me up: “So, what do you think is wrong with you?” What I really thought was wrong with me was the NHS being an unhelpful butt-dragging arsehole. What I told her was that I didn’t know anything because no one cared to look, test, check… I didn’t know what was wrong with me, because no one had told me. I hate it when doctors do that – it’s their job to tell you what’s wrong. That’s why they’re there. To do that. I didn’t go to medical school, or work in clinics, or get an MD behind my name. Are they being lazy, or just intolerably insulting by expecting that everyone is aDr Google hypochondriac that thinks everything awful is wrong with them? I know it would be entirely unthinkable if I went around asking a simple database user what they thought was wrong with the system backend when they couldn’t do something on it… they’d look at me silly. What would they know about the coding, the access logs, the system details? No, I wouldn’t ask. I would just go and find out from the “symptoms” given as to what was wrong with the database. Damn doctors should do the same, too.

 

I tried my best to answer all their questions, but I’m certain my answers were as confused and chaotic as my mind felt. The light was almost suffocating and drowning me, these women were firing questions at me, expecting answers I didn’t know how to give them.

BagPuss_BeanieToy

Bagpuss

I clung to the little BagPuss beanie toy in my hand. My mother had given it to me a long time back, because it was my favourite show as a child. It comforted me, helped me. I squeezed him so tight, I’m surprised I didn’t somehow break it. It was a tiny plushie thing that was small enough to fit in my hand, and I hid it in my bag. I didn’t want them to see yet one more weakness.

I was already in such astronomical pain – I could barely keep myself together, let alone my mind. The anxiety, the painful and nauseating cab ride over, the physical exertion and extreme pain endured when I tried to use their bathroom, behind a horrible heavy, large door… it all added up to my state of mind before I even walking into that awful white room of bright lights and people.

I had no idea what to expect. I was confused and in pain. No one sat with me and explained what was going to happen or what was expected of me. I just went into that big white room and was faced with all this. It was unfair. If I was there to give myself a chance to explain myself, they set me up to fail. They may have “wheelchair access” but they were not by any means disability-friendly. They weren’t caring towards people with neurological or mental health conditions that would leave them scared and confused.

Maybe they just expect and assume that “someone else” will take care of these people… but who are they? I certainly couldn’t find anyone to help me go there who knew what they were doing. I have no therapist or social worker, care or case worker, or any other professional. Charities have limited people and too many applicants for such assistance because the NHS or care teams don’t provide them. I had no one. And that wasn’t really fair. It was also too late before I thought of the NAS, and that perhaps could help with finding an advocate… waiting lists are always far too long. If a similar thing is presented again, I will call, though.

 

I have been through it, yet (ironically?) I still have no idea what was actually expected of me. I told the truth, and that’s all anyone can do – but the confusion, inability to focus, incoherence, fear… it all goes towards how you communicate with them. I told them I couldn’t really communicate well with them. They were aware of it. What I don’t know if they take it into consideration when they think about the case. About my story. The story I can’t tell unless they read my writing, which they have not. Will not. Weren’t going to.

Weather The StormI don’t know what the outcome will be. I don’t know how long it’s going to take. I don’t even know if they understood me, believed me, got it right. My friend tried to help, but they didn’t really give her much of an opportunity to. They refused to let her help me speak. They forced me to do it on my own, and I know I got it wrong. My friend really tried to mop up a few of the mistakes I made that came across incorrectly, but there was only so much she could remember, since they asked me questions for some time.

I was confused and perturbed by the manner they spoke to me and the way they organised themselves, their questions, the procedure they used, by the fact they made me speak for myself without my friend helping me. They did nothing to help me make my case… in fact they made certain it was more difficult.

Now it’s been a few days since, I’m more angry with them for doing what they did, what they put me through, how truly badly they made me feel – penetrated, probed, torn up… a victim. They should have been there for the truth… their methods undoubtedly made me unable to tell it. To tell them much of anything that was of any use. If they had been calmer instead of stern, explained the entire process at all, helped me understand and be calm, didn’t make me feel rushed, had read my writing instead of ignoring it, asking me to read it when I was too scared to… Instead, I babbled, confused and frightened under the bright light in the big white room that was imposing and giving me a migraine and a panic attack, unable to really say not even half of what I wanted to or should have.

They had no idea how to get the truth out of me. They didn’t get lies, but they must have had unnecessary information instead of what they wanted from me. They quite possibly wasted my time and theirs because it didn’t go the way it should have. A little more care and attention into taking individuality into account, and their work would probably be much easier. A shame they don’t understand such things, and you’re nothing but a ticket or docket number to them.

 

I’m left daunted by it, and a little haunted. I don’t think either answer will really dilute the experience enough to forget it. It’s left its mark, and it shouldn’t be like that. The system should support everyone who truly needs it and squeeze out those who don’t. Right now, it’s the other way around. Those who are not ill and clear-headed and manipulative are able to con and convince the assessors and panel into believing them. Others, like me, can find it difficult to communicate properly for various reasons (not to mention that pain and exhaustion from illness doesn’t help in and of themselves) and not do a very good job of making our case.

Whatever the result, I did do my best. Unfortunately, it may not have been enough. But I did my best.

 

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3rd July 2015: Tribunals & Tribulations

I must go to a tribunal – one to prove I am struggling and ill. That I have to go and prove that my life is so difficult… when I’m busy trying to forget how bad it is… it’s really quite demeaning.

It’s in 7 days. One week. I have no idea how I’m going to – supposed to – cope.

I can’t walk. In constant pain. I’m agoraphobic. I’m terrified of speaking to people. Of going to new places. So… their response is that I must go out to a “hearing venue” to speak to people and prove that my life is actually worse than what they think it is. Without support. Without intervention. I don’t know how I’m going to get through it. I already live in perpetual anxiety… I don’t think a word has been invented yet to portray just how terrified I am of going. 

If ATOS had done their job properly, had listened, had not disregarded information,  had genuine understanding of what it is to be ill or have a disability, then I – and so many others – would not have to overstuff court dockets full of these appeals. Pointless, ridiculous appeals. The PIP (formally DLA) system is so flawed, it’s beyond words.

The “independent assessor” (read: ignorant arsehole) has no intentions of being fair, and this happens. They refuse to believe you. They want more proof and make you of to mini-court. On the other hand, if they really want to see proof that this is difficult, and they want to push all my panic buttons, then they will be left in no doubt when I have the meltdown they’re so clearly vying for…

What do I even say? Am I supposed to say anything? There’s lots to be said… except that I can’t say it. So I say it here. If they care enough, they can read it…

 

I live my life in perpetual agony. There is no relief. Medical staff will ask about the Pain Scale… Mine is almost never under 7 – being a 6 is an amazing day for me… but any 6 is usually the result of a cocktail of alcohol and 8mg co-codramol on top of everything else I take. Which isn’t much. Then there is the the searing pure hell of a 10+ level of pain where I can do nothing but cry, or scream. Sometimes it’s so bad I can do neither – the intensity is so much that no noise or even slight movement can be made. The only thing that can put me out of my misery then is extreme amount of pain-dulling alcohol… I’ll take 2 or 3 shots, just until I just don’t care anymore. Until I can breathe.

Pain is my life. It rules it. Dictates it. It prevents me from doing much. From moving. Sometimes, it prevents me breathing, and I struggle to fight the pain and continue to breathe whilst the pain radiates horribly through my ribs, or my pelvis, my hands, legs… well, everything. Everywhere. Sitting hurts. Standing hurts. Lying down hurts. Frankly, just living hurts. Nothing helps. It never leaves. It just depends how bad it gets.

I cannot take the usual medication given for such pain. Opiates send me into a psychosis, and NSAIDs have a chance of making me bleed out. I would rather have the pain than lose my mind, or my blood. The Pregabalin takes enough of my mind that the pain hasn’t fried… I can’t afford for what’s left to be taken away.

I struggle with basic living. No, scratch that… I struggle with just living. I don’t feel free in any way. I can’t leave the house on my own… and even when I do, in my chair, it’s scary.  The world is scary. It was scary enough before being reduced to being pushed around in a horribly uncomfortable contraption that feels like a small tank. Now I’m vulnerable, really vulnerable, sitting in this chair, and I really feel scared of everything. Everything is amplified… magnified… traumatic.

Unwittingly I’ve been living, and struggling, with Asperger’s my whole life. Any minuscule control I had over it left when then pain came. It screams inside my head, inside my body, and takes every sense I have along with it. Hypersensitivity I’ve always had, every phobia I’ve ever had, every intense feeling of fear I’ve ever had, it’s all been intensified tenfold or more by this pain. By the frustration. By the fear and confusion it causes. I didn’t like going out or talking to people before… now it’s worse. The vulnerability of my situation… not being able to move or defined myself in any way… it escalates fear, fear gives way into terror, terror shuts down every essence of my being and my mind disintegrates into living hell that I can’t get out of or leave all by myself.

My passions have been taken away from me. I cannot work or do the job I loved. I can’t sing, and that kills me every day. It was my biggest coping mechanism, and now it’s gone. I can’t even walk my dog. I’m taken to the park, in my chair, where I sit and wait whilst other people go about with him and enjoy his company. That’s the closest I get to going to the parkland with my dog. The only joy in life, other than my little family of friends at home, and my dog, is gaming and computer tech. What little of my mind I have left, I use working with these. It stretches my mind, my thinking, helps fill my long days alone. Without it, I probably would have eventually given in and euthanised myself… there’s more than enough pills in the house to do a good job of it.

I feel pointless. I’m a lump in the corner, carried about in a chair, a burden, unable to do anything useful. I can’t work, or pay my way. I’m constantly exhausted and unable to do much of anything that I love. My quality of life is next to nothing… mostly due to being left to rot by the NHS (for both mental and physical health) and being and feeling utterly helpless in knowing what to do about this. With this. Without knowing what it is, how can I possibly know what to do with it to help? I don’t want to make it worse.

I already had enough difficulties in life: I’ve had at least one foot in the door of the Mental Health services since I was 11 or 12. I’ve suffered from physical ill-health with back pain and asthma being the worst. Then the pneumonia came… and after that… this. Somehow my life was taken away from me, and I don’t even know why.

Now, I have to go and prove what I suffer with every minute for the last 20 months – that’s coming into two years. Two years. It’s still not my norm. I still refuse to accept it. I get no external assistance; no help from the relevant services. After requesting CBT from my GP, the Waltham Forest Access services for mental health subsequently completely disregarded my situation and completely mismanaged my case and care, showing complete disregard for the . They even cancelled my one and only appointment for psychological therapies with them in June 2014 whilst I was waiting in the waiting room to go in, 20 minutes after the appointment was due to start, then discharged me (without telling me) after I was sent for a diagnosis for Aspergers with the ASD Unit.

It was only after the ASD Unit themselves requested that I have CBT that I was finally seen for a psychological assessment, in November 2014, after which I was told I would be put on the waiting list, which was at least 12 months long. I first requested this help back in March 2014… Now I wasn’t even going to have my first appointment until past November 2015? Nearly two years later? The GP even wrote and petitioned the Access organisation to see me, but it was only because of the efficiency of the ASD Unit. Neither he nor I heard from them again in regards to this. I never even received a letter stating I had been put on the waiting list… just a copy of the letter from the psychologist who assessed me requesting I be placed on it.

No one knows what is causing the pain. I had to wait 9 months between my 1st and 2nd appointment with the Pain Clinic at Whipps Cross Hospital, only then to be told that my one and only test – an MRI of the lumber region of spine, was negative, and was promptly discharged to the Pain Management Clinic at Bart’s Hospital. When I went to my appointment a few months later, the Pain Management practitioner who saw me was in utter disbelief that my pain had gone on so long without any diagnostics done other than an initial blood test and a narrow MRI scan. She told me they could not treat what they did not know, and “Fibromyalgia” wasn’t a diagnosis to be made based on the almost non-existent evidence. She requested I see more specialists and undergo proper diagnostics until they could reach a positive conclusion as to the cause of this agony I live with every day. Finally, someone with probably more clout than my GP had demanded more action from the professionals. There was a possibility now that the services would take my situation more seriously.

After enduring all this, after living through this, through everything in my life that has now become this crescendo of agonising hell, I find it insulting to the point of frantic fury that I have to go and prove it to a court. That someone has the power to say that I don’t – or worse, that it doesn’t matter. That the fact I am unable to remember to take my precious medicine until I’m in agony means I don’t require help in remembering. That the fact I am capable of understanding the “planning of a journey” actually means I can execute it. The fact that everything I say and do is belittled in an attempt to show I am not worthy of being financially aided to manage.

I am still astounded the fact that I am forced to endure more insult and trauma on top of what I already endure every day to prove that this is what I suffer. No longer innocent till proven guilty… Now you’re a benefit fraud criminal until you can prove otherwise, struggling all the while until they decide to believe you.

 


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