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 go 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 even 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. Being alive. 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 vulnerability that it brings. 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 parkland, in my wheelchair, where I sit and wait whilst other people go waking about with him and enjoy his company. That’s the closest I get to going to the parkland that I used to love to walk through 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, and also showing complete disregard for the long term consequences of my having to manage without support and in their duty to a patient supposedly in their care. 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, they discharged me (without telling me), after I was also 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? If I had been seen at that first assessment they cancelled, I would have been halfway through a 12 month waiting list by the time I got the second consult. By now, I probably would have had at least my first appointment. Instead, I’m only now just halfway through it. The injustice, ridiculousness, and disorganisation of it all ricochets through my head everyday. My GP even wrote himself and petitioned the Access organisation to organise an appointment for a psychologist to see me, but it was only because of the efficiency of the ASD Unit I received any appointment whatsoever from the psychology department. Neither he nor I heard from the Access team again in regards to anything. 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. I can only hope that this time, it has been done.
No one knows what is causing the pain. Still. I had to wait 9 months just between my 1st and 2nd appointments 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 actual 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. I have a rheumatology appointment coming up in August… Perhaps they will finally find out what it is that’s causing it. Perhaps.
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 tribunal. That someone—just a tired and bored assessor with targets to meet—has the power to say that I don’t – or worse, that it doesn’t matter – is appalling. Saying that the fact I am constantly unable to remember to take my precious medicine until I’m in agony means I don’t require help in remembering my meds. That the fact I am capable of understanding the concept of “planning 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. It’s all just so insulting. Humiliating. Horrible.
Before I even went to their appointment, I was extremely anxious and was melting down several times a day because of it—because of the anxiety. From the first moment I opened the appointment letter. It was a long way away, a long drive, and I was afraid of going somewhere new, somewhere far, and on a journey that would leave me in pain before I even got there. When I arrived, I was indeed already tired and in pain. Then I was told it was going to be a long wait. For three hours I sat in my uncomfortable chair (not the one I have now, a cheap, awful one), frozen because the air-con on the ceiling was blasting, despite it being cold. I was more and more anxious, getting more and more in pain.
By the time I was called, I was half-zoned out from the pain I was in, but trying my best to be nice because it was the assessor’s fault I was in this condition. I left my friend in the waiting room because she convinced me it was best that I try and do it on my own, that it was good for me, my confidence, and to try and maintain some form of independence. So despite my anxiety, I went alone and struggled to get myself into the room, refusing help from the assessor. I sat in the room and answered his questions, with my iPad out. It was as much of “comfort blanket” as it was a vital reference guide to be used because by now my mind was quite frazzled and exhausted, and I was in quite excruciating pain, which I tried to ignore so I could focus on what he was saying. I told him everything the best I could. I did my best. He clearly did not.
Reading back on the notes, I can see he disregarded much that I said – even the condition I was in, calling it “discomfort”, which is the understatement of the century and extremely insulting. Because of the amount of time I spent between travelling in the cab and sitting in my chair, my condition deteriorated, I could subsequently no longer walk or stand very long at all after—whereas before I could at least go for very short walks with the aid of my dog. The next time I tried to take him out, I was in so much pain I screamed and nearly collapsed to the floor, only putting my hands on the dog stopping my fall. Luckily my friend was with me and she virtually had to carry me home. I have not been able to walk more than a few steps since without excruciating pain and sitting down. I have removed all furniture from my home and use beanbags to sit because I cannot sit in normal chairs for long periods of time. To sit in a car’s seat and in my awful wheelchair for so long—all day—had made my condition, whatever it was, worse. This is one of the worst parts of not knowing what is exactly wrong… You never actually know what going to make it better or worse. In this case, going to that appointment made it worse. Much, much worse. Now I can no longer even walk my dog properly—I can only take him out with me when someone takes me out in my wheelchair. It’s price too high to pay for such a clearly-pointless assessment, given they paid no attention to half the problems and difficulties I have to endure every day.
I am still astounded about the fact that I am forced to endure even 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 simply a benefit fraud criminal until you can prove otherwise, struggling all the while until they decide to believe you. Until the time this tribunal is over, and I’ve had time to manage analyse and assess every moment of it until I can entirely understand it and my memories are familiar with it (that is one more exhausting “side effect” of my ASD), I will be anxious, melt down, be emotionally volatile, and ridiculously frustrated at just how ridiculous and pointless having to go to a tribunal because the assessor tried to “play God” with my life, telling everyone what mattered and what did not.
Well, I have to live it, every single minute of every single day, so I say it all damn well matters.