Tag Archives: PIP

And The PIP Nightmare Continues…

Oh my… ********* !! I cannot speak! Buggers cancelled the damn PIP appointment 11:30am on the day, literally right now – was supposed to be at 3:40pm today!

Now I have to wait until next Monday (it’s Wednesday today) until the next one????

I mean, really, they no not understand how ASD works, and now I’ll be lucky not to have a meltdown… I can literally feel my brain imploding right now, and I might even actually cry… I really can’t even breathe…

I did not require this extra distress and stress on top of everything else! What is wrong with these people??! I really can’t be doing with another meltdown…

Oh, I’m so sad and confused now… I really don’t know what to do with myself  – my anxiety was already through the roof, and now it feels there is no number big enough to cope… I used to be better at it, but this/these illnesss(es) has now taken all that away from me, and I’m basically left as a panicking jackrabbit the entire time…

Ohhhh… … …

 

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Never Rains But It Storms…

On 14th February 2017 I received a text message to state that a PIP update form I sent them two weeks before had been received. Today, on an already-terrible Summer Solstice day, I received a letter package from them – over four months later – to go and see them next month.

I’m scared about this. I’m barely managing as it is, and this is terrifying. You hear on the news of these so-called Health “Professionals” being downright terrible and respectful, even abusive, about their “clients”. About them meeting targets by writing off the sick and the vulnerable. About how they force you to go to tribunals to get what you deserve. What little that is, anyway. It’s not like PIP is a liveable amount, not when even simple things you need are so expensive (clearly no one at PIP has ever been to Ableworld or had to personally finance things the NHS either refuse or never get around to). They’ve even written off a friend, taking everything away, despite her having all the evidence and more required to prove how ill she is.

It’s a terrifying prospect having to meet them again. The last time was several years ago, when I lived in London, about a year after I  became ill. It was one of the most stressful times, and my best friend was my amazing rock and I will be forever grateful to her for all her help around it. We travelled to some place I’d never heard of quite far out of London, and had to pay (a horrific amount, about £90) for a cab both there and back. I had to go in my first god-awful wheelchair, which was so uncomfortable, and we were forced to wait for hours to be seen.

I was so ill when I went in to see the person – some guy who was an uninterested and arrogant sod, who also took no interest in the fact I was there in a wheelchair and clearly traumatised. I shouldn’t have gone in there alone, but I did… and it was only to my detriment. He basically lied about a bunch of crap, played everything down, and then the outcome was I barely scraped enough to cover basic Standard Daily Living. I saw red, got help to make an appeal, and my friend and I eventually went to a tribunal. They awarded me Standard Mobility as well, without question. It’s was so horrifically stressful to go there, but at least this time I saw three older, highly intelligent women who had reached the top of their professions. To them, it seemed it was a no-brainer.

So… I’m not looking forward to seeing some other inebriate again.

Arguably, I can at least say that it seems like they read my dossier that I sent with my update form. I rather expected they wouldn’t. It was rather the tome… But in the 4 months hence, things have become even worse, to the point – as we all know – where I’m imprisoned in my own home until I (eventually) received the special chair that was ordered. You know, the one that’s not going to try and kill me. I even had to push back their original date (3rd July) for another, where – hopefully – said chair will have finally arrived (with the new date being on 12th July). So… in three weeks’ time then, give or take. That better be long enough, because if I have to go in the other one, I’ll probably just die and it won’t matter what the hell they think then.

Once again the paperwork has to be dragged out (another tome of reading!) for them to photocopy (Lols… their time and dime, and karmic punishment, quite frankly, for not realising it’s the 21st Century and everything’s digital) and hopefully read at least some of. I’ll throw in pretty much everything for good measure – I always do, you never know what rubbish they’re going to be looking at whenever these things turn up. At least then they can’t complain. Or say you didn’t tell them, finding a nice, tidy loophole to wriggle right out of. It’s bad enough that my chronic conditions are weird and no one understands them. Hopefully, these whackadoodles will, and will see that I unfortunately cannot manage their general expectations of someone who qualifies for “Standard” anything on this.

I honestly don’t care about the money. Yes, given how ridiculous prices are compared what you don’t have to spare, money can be rather handy. However, I prefer the recognition. Where they stand there, nod, and acknowledge I go through this, that I must live and struggle in this way possibly forever. That’s what I really want.

It’s wasn’t as if today wasn’t bad enough, before all this, having not slept all night due to paraesthesia and hyperactivity due to my confinement (again… Haven’t slept properly in probably a week) and suffering “Isobar Flue”, thanks to them dropping down to 1011mb and bringing huge storms along with them to suffer with. The storms are on their way as I write. I hope they’re not bad enough to be named… I certainly do not require such turbulence now… nor am I now in any position to cope with it.

I’m so upset now, I’ve got through at least 5 gluten-dairy-free chocolate chip cookies. At least there’s no ice cream…

 

 


Alternative Thinking…

“Alternative” medicine is all I have left to use now – anything synthetically grown in a pharmaceutical lab generally does not agree with me (with severe side effects)

The latest attempt at some relief from this neuropathological crazy is CBD, or Hemp oil (aka “legal” type of cannabioid). It tastes of pure evil, but it’s early days so far. I’d like to think there’s a different, but it’s too early to really tell.

The essential oils recipe I have now is pretty fantastc – and including basil, Wintergreen, white camphor, juniper, and frankincense are all very important, key ingredients to making it work… the Wintergreen and Frankincense especially so. All put in pure Coconut Oil (but sweet almond and jojoba oils are also really good too) to be massaged in at least twice a day.

Another really helpful thing has been Magnesium Oil [spray], which helps dissipate the spassms and relaxes the muscles around the neck, shoulders, and shoulderblades to help prevent them – or at least the worst of them. Little ones get through.

This is obviously a very expensive treatment plan. They’re all very expensive products, and when added together is a rediculous amount of money… it makes you realise how it must feel to try and scrape together your healthcare treatments in the US and how lucky we are to have access tot he NHS.

Unfortunately, the NHS doens’t do natural products, and so I must use a hell of a lot of my pittance from PIP to pay for all this. If the government thinks what pittance pocketmoney they give is actually enough to pay for any of what ill/disabled people require to pay out for things they need, they’re completely delusional in the most rediculous way. Presumably they also believe in unicorns and see leprechauns, too… And they’ve clearly never been shopping for necessities to help with such situations and circumstances.

I’m relieved that there is at least something out there that helps. If I just relied on pharmaceutical meds, I’d be screwed. I can barely function on the Pregabalin, so there’s definitely no chance of going downhill from there on medication that’s supposed to help, but instead makes me sicker. Thankfully, Mother Nature got there first, and this Wiccan is used to looking elsewhere for answers rather than “modern” medicine.

 

 


No Expense Spared

After all this time, it once again occurs to me more an more how ironic – and moronic – is it that when you are not able to work due to illness (or accident or any health-related matter), your life suddenly becomes much more expensive and you have much less money to do it with. The expenses of just being ill is astounding… and somehow you’re to manage to pay for things despite having much less to do it on.

I’m not sure how the true so-called “benefit scroungers” manage to exist on just whatever they’re given by welfare, or how it doesn’t occur to them to get jobs instead of struggling on these minuscule “handouts”. Unless the only ones who do also have secret jobs on the side. I barely make over 50% of what I used to earn out of these “handouts”, and yet I’m somehow expected to pay for more things, expensive things, out of them.

A wheelchair. Walking aids. Bathing aids. Cabs. Extra over-the-counter non-prescription meds. Joint-Care pills and vitamins. The things you didn’t need when you were healthy enough to work. And those are just some of the obvious ones. Then there are the hidden ones  – energy/utilities are not subsidised just because you can’t work, yet because you can’t work, you’re at home all day, you subsequently use way more electricity/gas/water than you do when you’re working all day. Especially when you’re a tech-head and use high-energy computers and consoles all day. Then there’s the also rent – the the Local Housing Allowance (LHA) doesn’t cover real London rents – not even half (literally), so you have to find whatever’s left out of the money you need to use for everything else.

I’ve just agreed to hydrotherapy to try and help the pain, and hopefully strengthen my arms and legs a little (due to pain, there’s some weakness starting to become quite pronounced). For this, I will need to pay for the cab fares to and from the hospital several times a week, and pay for a swimsuit – I have not owned one of these for at least 10 years and am now forced to find one when I really don’t want one. Unfortunately, they’re also now really hard to find because it’s the tail-end of summer and they’re almost all out of stock… apart for the more expensive ones no one wanted to pay for. Naturally. So there’s more things I need to pay for I otherwise would never need or use.

 

When you used to have money and then you have none, it hits pretty hard – surprisingly so. Especially when the place you live in, which was within your means when you got it, is suddenly too expensive, and housing assistance is limited… proving your suspicion you’re paying well over reasonable rent rates and that private landlords in London are greedy predators. If I didn’t have a very good person, and an exceptional friend, living there with me, I’m pretty sure I’d be on the streets or back home with my parents… not where I imagined I would end up living in my 30s.

Once, the most expensive thing I used to pay for was M&S food and Starbucks. But I used to have a nice pay-packet to afford them. I managed to cope with using London’s TfL network (just £1.45 each way for the bus was quite affordable… or at least that’s how much it was back then) and didn’t require anything more than some occasional mild-co-codramols – mainly because I could afford a good diet and didn’t require any supplements. Now, it is such a different story, having to find money from nowhere to pay for things you never thought you would need to think about, and the things you used to think about get pushed onto the back burner.

Despite needing more than ever to have a balanced and healthy diet, I can no longer afford to eat well or properly – certainly not as well I am used to – and nor can I make good food for myself now anyway. That fact annoys me because I’m used to eating better, and better quality good food. I’m used to going shopping, getting fresh vegetables and making big vegetable pasta dishes. I’m not used to relying on what is essentially basic fast food, and trying to think outside the box when you’re physically limited with what you can make is difficult to say the least. Add to the fact you can’t even afford to buy the good stuff and your options narrow dismally.

It’s still strange to me that I can’t afford to go out, go shopping for something nice, eat nice food, just go out for coffee, go on outings, and certainly not on holiday (unless you count a trip to my parents’ place in Snowdonia…). I haven’t been to non-vital appointments at the GP surgery and have phone call appointments with my doctor. I struggle to pay to go to the hospital for appointments, and I’ve just had to pay £40 for a round-trip to the (18-month late) ESA healthcare appointment – and I’m not even sure they are going to reimburse that. The point regardless is that I had to ensure I had the money in the first instance – and because of which, other things could not be bought.

 

The list of acronyms in what is effectively nothing more than pocket money is hardly worth it. It doesn’t cover anything. The only reason I paid for my chair and other things was the extra PIP a year’s worth of back-payments that came in all at once after my tribunal. Even with the “raise” in my PIP (now they finally accept I have mobility issues), and hopefully now one in my ESA, it is still difficult to pay for things that are quite necessary. To go out anywhere I have to pay for cabs, especially if I want or need to go alone.

No expense is spared from you when you have an illness that renders you unable to work. And in fact they tend to add up to more than you spent before. You lose your independence, freedom, work, income… and what you get in return is virtually nothing, and the government, other bodies, and even other people, see you as a burden on society. Then you have to pay the same for everything regardless, and more, on top of it all. Ironically, on my usual wage, none of this would really be much of a problem. With quietly nearly exactly half (40% in fact) of it missing, though, it’s pretty tough to manage.

I do end up feeling like I’m being punished. I can see now why people pay for certain insurances that pay your wage-equivelant if you get ill (unfortunately, they don’t cover contractors, though). Just when you need your money the most, you can’t earn it anymore, and because of your condition(s) you can’t earn the money you need to deal with it. It’s a cruel irony.

 


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.

 


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.

 


The Waiting Game

Ignored. Let down. Lost somewhere in a system that doesn’t even seem to exist. It’s not the best place to be, or a good position to be in. The NHS is now a big corporate-esque shell of its old self, doing nothing yet eating money like it’s biscuits, leaving people like me awash on the side with nowhere to go and nowhere to turn.

Clearly NEL NHS Foundation Trust has no idea what it’s doing with any money it has. Its services don’t seem to exist. After a year of trying to get help, get better, get heard, get… something.

I love the fact the current government cut spending on NHS and local council services, yet demand the sick and the disabled “get up and get a job”, lest they get kicked off their ESA and PIP/DLA. Apparently we’re all faking, all lazy-arsed bastards, and don’t need the NHS and local council services – what we need is to get a job. Oh, but they don’t exist too much either, because they’ve cut a whole bunch of spending and funding. Clever.

I have a good GP, but thanks to the whole NHS England Foundation Trust reshuffle, services have gone from “barely OK” to horrific. Non-existant: Ironically, the reason I was brought in to help at my last job ended up being the reason I could no longer work there, or anywhere else. Everything he has become absolutely appalling, and most certainly under NEL (North East London).

I did my best to avert dealing with the healthcare system. Even after I was diagnosed with pneumonia (Halloween 2013… and I used to like Halloween – Samhain – before…) kept getting worse, kept getting sicker, was in more pain. Eventually, when I had to give up my job, I went to ask for help.

By March 2014, I could no longer deal with the crippling pain I was enduring and it was then I to give up work. My GP referred me to the local pain clinic, and I also asked for therapy – specifically CBT – to help deal with it. It’s February 2015 now. I am still waiting for the help requested nearly a year ago. And there is no end to the waiting in sight.

 

A Therapeutic Joke…

When I asked for CBT back in March 2013, I was first sent to the Access Team, a mental health community care program for the area. A pointless mental heath community care program – one clearly without staff, resources, funding, or common sense. Their initial response to my request for CBT was to send a social worker… and I’m still not sure why. I talked to her, since she said she was there to assess me. She took everything down, listened, and was the person who realised that all my issues sounded exactly like Asperger Syndrome, and suggested I also request an assessment as well as the CBT. She said that my case would be given to the team, I would be assigned a caseworker, they would send a home assessor, and they would get back to me regarding the next steps.

Only… nothing happened. I got no more contact from them. I called. Then called again. And again. I had to speak to different people each time – only on three occasions did I speak with the same person. Each time I called, reception “knew nothing” and and would just suggest “someone would get back to me”. Sometimes they did, sometimes they didn’t. What came out of those calls was nothing. They finally sent an “assessor” but it turned out they “couldn’t” assess me for help in the home until/ unless I got DLA/PIP – the assessor just sat with me whilst I called the DWP for a PIP pack. So very helpful.

After more and more phone calls to the Access Team, an appointment for a psych assessment finally turned up for June, with a psychiatrist/clinical psychologist at the Ferguson Centre, Walthamstow. By this time I found walking so difficult I wasn’t able to use the bus and I had to pay for a cab and take a friend to help. I went early to the appointment, 20 minutes early, just to make sure I wouldn’t miss it. But it seemed like I was going to miss it anyway. After waiting 20 minutes over my appointment time, someone finally comes to me. Not to get me: To tell me my appointment has been cancelled. Just like that. After waiting months. After being desperate for long enough already.

I managed to get out of the place and broke down outside. My friend went to get someone to come and speak to me. The person was an idiot, faffed and flustered at my inconsolability and desperate crying, and eventually she disappeared and came back a few moments later to offer an “emergency appointment”. What a joke that turned out to be.

I had to go to a completely different place. My friend took me in a wheelchair on the bus because I couldn’t afford a taxi fare there. It was a nightmare journey, made all the worse by the complete second farce to emerge regarding this attempt at a psych assessment. After all that screwing around to get it, they didn’t even know I was coming. Then they decided I was in the wrong building and sent me to the right one… which couldn’t have been less wheelchair-friendly if it tried. Eventually I saw someone… and my original professional psych assessment turned into a training exercise for an idiotic trainee-GP who clearly knew nothing, not even the art of listening.

She listened to nothing I said, except one thing that she kept fixated on, which was trying to make me admit to  being “impulsive“. Ignored the depression, the Aspergers theory, and just about everything else. Then, because she had just come off a training exercise of a few weeks with people suffering from personality disorders, she the decided that’s what I had: specifically, “Emotional Explosive Personality Disorder (aka: Intermittent Explosive Disorder). Told me I would be “seen by a panel of professionals” (the thought of which scared the bejeezus out of me) before deciding what would be done, then sent me on my way. I was floored, bewildered, and later furious. A few weeks later, I then  got a referral letter and a leaflet for a scheme called Impart  – the stupid “recommendation” of the idiot trainee GP (as in not professional psychologist/psychiatrist) had been taken verbatim and I had been unquestioningly been given a referral for treatment for Personality Disorder.

I broke down and cried again. This time, calling the Crisis Team in floods of tears because it was a Saturday and I couldn’t call anyone else. Then they told me something interesting no one else had bothered to tell me before: The NEL now had a new and shiny Autism Unit. Specialising in ASD diagnoses. That first thing Monday I should call and demand to be referred to them. So I did. I also demanded to know what had become of my original request for CBT. Eventually, after the usual “someone will call you back” excuse, someone did call me back – the secretary for the original psychologist/psychiatrist I was supposed to see (I still don’t know which she was, they both have “Dr” in front of their names, but for very different reasons). She then explained that the team had decided to not pursue it because I had been referred to the Impart Team. I explained about the ASD Unit and my request for a referral, so she suggested seeing the consultant from there first before doing anything else. Another brick wall. This is all whilst my mental and physiological health are rapidly going downhill. I didn’t know how much more of this I could take.

A Useful Diagnosis

The first bit of sense I saw the ASD assessor. A real breath of fresh air, which was unsurprising given he didn’t actually work there. He was nice, listened. Seven months after I first requested help, at the very end of October, exactly one year after all this first started, I saw someone who actually helped. He spoke to me. He later called my mother and spoke to her. Then about a week later I had it confirmed: I had Asperger Syndrome. The reason I had never been properly helped before was that people were treating the symptoms and not the cause: A strange form of autism that had made my life a living hell because I had never understood it. Or myself.

It was like a weight had been lifted from me, and my opinion of myself immediately grew a little. I wasn’t an unhelpable lost cause and prolific depressive with “emotional explosive personality disorder” (and I read up on that… I definitely didn’t have that!)… I was just misdiagnosed, misunderstood, and not properly treated. Even understanding it all made a big difference.

There was a side-effect to that rise in self-respect though. The fact I could no longer manage for myself made a huge dent in that newfound pride. It finally had somewhere to hit, whereas before there wasn’t. Whatever my physiological complications were, it was constantly getting worse, and with it my despair and frustration at being “pointless”. With the rise of my self-worth, was also the fact it could be undermined by my no longer being able to bring in money to look after myself. That I could no longer look after myself. That I couldn’t walk, or undress, or lift my arms, hold some things, open things, and any number of other things that we all take for granted until we can no longer do them.

Open Wound. Salt. Rub.

Thanks to the doctor I saw to get my ASD diagnosis, I finally got my psych assessment for this past Monday, February 2015. Eight months after the last one was cancelled. It was a nightmare day. The guy didn’t even see me till 15 minutes after my appointment start because the receptionist didn’t tell him I was there, and I had got there half an hour early by cab, just about managed to walk with 2 sticks to the door, then sat in a horrible chair (all furniture now hurts to sit on, and I either sit on the floor on on beanbags at home) to wait for 45 mins, walked with my sticks all the way to his room, where I then spent another hour sitting in a horrible chair to talk to him.

He was… okay. Mainly a wet blanket. He took down details, spoke to me (kind of). Somehow had no idea I’d spent my life in and out of therapy. Made it clear that this was just an assessment, after which I would be put on a waiting list. A twelve month waiting list. After waiting eight months to just get another assessment appointment, I nearly had a meltdown right there and then. I probably should have, so he could see the extent of the internal pain and turmoil I was in. Then another bombshell: this was not long-term support like I wanted and needed. It was a 20-session max offer. At one a week (which I could ill-afford anyway), that was a maximum of 5 months of help. I don’t think I’d spent less than a year with any of my therapists before. I needed long-term, ongoing care – and after all this waiting, all the fighting, all the begging… this was all they were even offering?

I’d be better off getting a PS4 or upgrading my PC and spending that cab fare on that instead (it would cost at least £200 in cab fares to go there for 20 sessions) – tech and games might be better therapy than a measly 5 months of CBT. I am going to be in this situation for longer than 5 months of therapy will cover– and I do not have 12 months to wait for it to turn up in the first place. By the time I would get therapy I would be completely ga-ga… I’m nearly there now. I am already talking myself out of self-harm and worse on a daily basis, and I honestly do not know how long I can keep that up for, given that the option of not being in pain anymore sometimes outweighs common sense when I feel in agony and am desperate for it to all end.

 

If they could take the pain away, or relieve it a little more, it would be a little more bearable. But that isn’t the case either. In fact, I am probably not even as far into the system with that as I am with the mental health one… and I have never experienced that before.

 

Putting the “Pain” into Pain Clinic…

It was also in March 2014 that I asked for help with my growing chronic pain. Again it was June when I had my appointment for the Pain Clinic, at Whipps Cross Hospital. I thought I might actually at least get somewhere with this: everyone knows that mental health appointments take some more time than others do.

Apparently, I do not have much luck with appointments. My appointment was for first thing in the morning – yet, it was still much later when I was finally seen (playing rather fast and loose with the word “seen”, too…). The consultant couldn’t get me out of there fast enough, barely speaking to me or letting me speak. In fairness, he couldn’t poke and prod me to investigate the pain – I just about managed to not scream and pass out when he very gently pushed his fingers by my lower vertebrae – and based on that fact he requested and MRI scan and that I be put on neuropathic meds for the pain, apparently of the opinion this was all from lumbar disc nerve compression. It’s quite likely there is some compression, but I’ve found no documentation that it makes every cell and joint in your body hurt so much you can’t even move.

It was left to my GP to prescribe Pregabalin. It was slowly raised until I was on the full dose, and some small amount of the pain was eased somewhat. Enough to not almost die from mind-exploding agony. Given I was unable to take opioid painkillers, it was left just to the Pregabalin to do as much as it could. I thought I could manage a few weeks, enough time to get an MRI and a followup appointment.

I was crushed when, back in the end of June [2014] – before I’d even been given my MRI appointment – I was sent my followup appointment and saw it was for March 2015. Nine months after my original appointment. I’m still six weeks away from it now. Amazingly – stupidly? – the MRI was booked for the end of July. So that meant there was eight months between the MRI scan and my being seen again. If there was going to be any issues with whatever might have been on that scan, it would then also be eight months worse than when that picture had been taken. Genius.

 

Where To Now?

Without support anywhere, help from anyone, and simply sitting and waiting (despite telephone calls, begging, crying, etc), I have really no idea when I can expect to have any such things. The Pregabalin only does so much for my pain. Trying Devil’s Claw extract has actually helped where no painkiller would dare tread (after a psychotic breakdown from taking dihydacodeine and distorted reality/mild hallucinations on doses of just 15mg of codeine), I’m never taking an odine anything again.

Even my GP is annoyed. He’s sending me somewhere else if/when the pain clinic followup gets me nowhere. Presumably the MRI didn’t show anything too radical, otherwise (hopefully, at least), they would have called. The results aren’t sent to the GPs here anymore  – they’re only sent to the requesting physician. Which, in this case, is the guy at the pain clinic.

The going theory between my GP and myself (the best and smartest GP I have ever come across, bar one, with which he’s joint-first) is that this is more than likely going to end being Fibromyalgia (read any website’s list of general symptoms for this, and it means I don’t have to re-write all my own symptoms here…) and should probably give up on the pain clinic and look to being re-referred to Rheumatology. I hate to think how long that is going to take, and am tempted to use my ability to request any hospital I want to be sent to a different one than Whipps Cross. If they even have a rheumatology clinic anymore – it seems most of their clinics have been shut down now. The next nearest one is place I am familiar with and they actually seem to run a half-decent ship there, so I’m thinking about that for when that time comes… At least one useful thing out of treating the NHS as a private business will come in useful. Although I’d rather my local hospital be properly seaworthy than have this ridiculous situation where I have to go elsewhere because their business model sucks.

Then there is also my deteriorating mental health. I have no job. No way of working. No way of earning my own money. “Benefits” are a joke – and why they are called that is beyond me. They don’t benefit me at all. Working does. But their stupid NHS system leaves me without diagnosis, let alone treatment, for my conditions, and ergo I am unable to work. I earned more in a week than I get in a month of “benefits”. I struggle to buy food. Anything else I took for granted is gone. And now I even have the added burden of having to pay for a cab every time I need to go somewhere, like the GP or one of these pointless other appointments they keep sending me to. I hate to think how much I’ve already spent on those. Some I’ve actually had to cancel because I can’t afford to go, and sometimes I don’t see the GP when I need to because I don’t have the money. Or I have to eat.

Things are so pretty bad, and sometimes I feel pretty hopeless about this whole thing. I’m now scared to see what Rock Bottom is going to be… Unless this is it. Which is not so bad. Maybe everything will come at once and I will get the help I need.

You never know.


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