Tag Archives: ESA

Does Nothing Ever Change…?

I’ve been to hell and back. I think maybe I’m still there… but at least my life isn’t on the line anymore.
27th January I got taken into hospital, half-conscious, and apparently in a bad way. They found streptococus and staphylococcus in my blood, along with a “horrendous” UTI and a bowel infection. I’m not quite sure how much longer I would have been saveable for.
Luckily, I’ll never have to find out. They saved me. It took 6 weeks of being under their care, during which I also contracted more UTIs and a mystery infection that sent my temperature to 40.9˚C. I hate to think how much Tazoan [sic?]they actually pumped into me, but I’m almost convinced my blood is now mainly made up of that and coffee now…
Sheldon–What Fresh Hell
It is completely disingenuous now to wondering it if was the right call… And, after all, I’m not in as much extreme pain as I was – is was about 1000/10 by then. Now it’s down to 9.9 or 10/10 … so there is a big difference.
However… To what end does it really matter, when you’re half-dead anyway? A brainless zombie who is still in the utmost of pain, lost in the system, broken beyond repair, not even the ghost or shadow of a shell of what I once was?
I have a catheter because I can no longer control my bladder – or feel it. And it doesn’t even want to stay in. I cannot walk or dress or wash myself. I can no longer drive, or shop, or go out, do chores, tidy up. I have no control over my environment because I can barely move.
I have difficulty eating, moving, functioning. I have zero quality of life.
No one would ever keep a dog or a cat in this state. The humane thing would be to let it go. And yet, because I am human, there is no humanity given. Instead, I must just somehow “put up with” being tortured every second of every minute of every hour of every day… for years. Five, to be exact. Well, it will be in a few short months.
Nothing ever changes. Fine – yes, I have painkillers now that make it a little better. But now the new storms have hit (Thank you, Storm Hector…), again. I’ve been rendered completely buggered once again. There is no mercy here. Just tragedy and trauma everywhere you look around. Unable to ever comprehend, never being able to correlate, just whathas happened here to me. How far I’ve fallen. How much has been lost… destroyed… 
Being eaten away, drained of everything I am, by a condition no one seems to know anything about. By one that took away everything I worked my entire life to achieve. That took away everything that I was. Who I was. What I was.
 High Pain DayI fought my way to the Summit of the mountain I climbed, and in one fell swoop I was thrown off, plummeting to the bottom of the deepest mine beneath, crushed, broken… and no one heeded my screams nor saved me on my way down. Now, I am a nothing… and I was so close to being a something… something I really wanted to be.
I was about to achieve what I had wanted my entire life – I was about to join a career-making opportunity, based on skill alone… despite not having a single official qualification for IT, and based entirely on my own brain and ability. Just a brush away from a proper salary, a permeant contract, a proper job. With one of the most incredible NHS hospitals in the country.
All gone because of something no one wanted to stop.
That plummet, bouncing, crashing, falling, spinning, all the way down past the ground level I began at, straight past it and crashing – broken into too many fragments to ever count – onto the bottom of its deepest mine… Looking all the way up… Wondering how in all Gods’ name did I get down there, and how in all Hell on Earth I was even going to attempt to get up, let alone get all the way back up there…
Holding On
Now it’s nearly Five Years hence. It’s been a living nightmare. A waking Hell. Walking the darkest horrors and enduring torturous months and years that Satan himself would balk at.
And I am genuinely wondering why I am here… How I came to be here… How was I ever supposed to be OK with the trauma of being left and ignored for all those years, until I was broken beyond repair. Listened to only because I came close to very nearly not being here from blood poisoning… and only then given a little help. Where were they when I needed it, before I got here? 
Before I was left crushed to dust with nowhere to go, unable to move or walk or even go to the bathroom… Before I needed a wheelchair and my parents to even begin to do anything?
I can’t have a shower unless it’s at a Premier Inn – who have amazingly easy to use img_0904shower wet rooms, and cute, comfortable bathtubs too. I went over 2 months without a proper shower – barely struggled, badly and horribly had one just after leaving the hospital. I only had one when I went to the Blackburn Premier Inn a couple of weeks ago. And I had my properfirst shower since I left hospital on 8th March. And I actually felt happy and relaxed after a shower for the very first time in a very long time.
Funnily enough, I can’t say anything like that about home. It’s not suitable for use. Yes, I’ve told them. I’m not holding my breath that they’re going to actually do anything about it…
That’s the world I live in… From being fully in control of my life, of my existence, of my choices, of everything… I am now at the Mercy of everyone. If I want to wash, if I want to change my Tena incontenence pants, if my catheter comes out, if I want to eat, if I want coffee, if I want to get dressed, if I need medication, if I need something from downstairs – or even from the other side of the room, if I want to use my own goddamned shower… You get the picture. For pretty much anything.
And the most insulting thing? I get paid to be ill. That’s what Disability welfare – stupid PIP and ESA – is … and it is pittance. It’s not even enough to be classed as pocket money. That’s your job now. To be unequivocally unable to do anything. And getting a tiny amount of finances to supposedly help you whilst you walk through the shadows of the Valley of Death alone, frightened, and without hope you’ll ever, ever leave again.
And the Government has the freaking impudence to think that not only can they put a price on that, that the price they choose is nothing compared to what you really need…
Somehow they think it’s enough… And if they think that, they’re either insane or delusional. Certainly certifiably stupid and ignorant.
Back to whence I came… Back to being trapped as a prisoner in my own body. Back to being imprisoned in my room. Back to not being able to wash properly. Back to struggling with agonising and debilitating pain that refuses to allow you to actually even move. Or even breathe.
Storm’s Calling… And Hell Is On Fire Once Again…
  

 

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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.

 


If It’s Not One Thing…

Wow… I still can’t believe I have to survive on less than half of what I used to make when I was working. The term “benefit” is a joke… it doesn’t benefit anyone. Not me, and not the country/government/treasury/whatever. No one. It doesn’t help I don’t get what they say I should… After nearly 14 months I’m still only receiving basic ESA because I haven’t been assessed, and the PIP guys think I shouldn’t have the “mobility” part, despite being wheelchair dependent and housebound from pain. Go figure. It’s being appealed – and you never know, they might actually get to doing my tribunal before I die of old age.

What would benefit everyone would be if I could go back to work. But thanks to cutbacks, I am in no fit state to do any such thing, and I probably won’t be for some time.

It’s a shame they can’t get themselves together here and sort out the NHS and DWP welfare system so it’s fair and works – you should be able to support yourself if you can’t work. Of course, a lot of us would actually be in work if the NHS managers got off their backsides and made it about healthcare instead of bureaucracy and paperwork. I would actually be helped, diagnosed, and if not cured then at least properly supported. I wouldn’t be on 12 months+ long waiting lists for help. I’ve already been ill a year. Now I have to wait another one just to be seen to get some support to try and get a little better.

20120617-233040.jpgIn that time, I could have been sorted out and able to go back to work, even if just part time. Or working from home. Imagine the wasted money… taxes they have lost, the payouts they have made, loss of council tax being paid… I could have paid my way if the NHS wasn’t so broken it can’t even help me.

Going back to a “normal” life seems like a long way away, still. I had imagined that by now I would have been on the road to recovery. The reality has been rather more sobering.

After a 9 month wait to see the pain clinic consultant to only be told my MRI was clear and he was going with “Fibromyalgia” as a diagnosis, he decided the only course of action was to see the Pain Management clinic. Fine. But when I got my Choose & Book letter and went online to book myself in, the website told me there were no appointments. That the next available appointment was “unknown“. That I would be called “by” 27 April regarding organising an appointment. This was to go along with the 12 month CBT waiting list. So it looks like I’m never going to be seen by anyone. Ever.

My GP has now decided that he’s not entirely confident with the fibro “diagnosis” and wants a neurologist to rule out anything else going on. There probably isn’t, but, in fairness, fibromyalgia is supposed to be a “diagnosis of elimination”, and one single MRI scan isn’t really enough to qualify for that.

It is also based on the fact that I’m not getting better… something I’m not exactly impressed with. I was hoping to be better by now. If anything I’m getting worse, but that has probably more to do with psycho-somatical issues (as in physiological responses to emotionally stressful situations) and muscle weakness from not being able to move much. Then there’s also the cold… that has really put me back – though hopefully, with the nice(ish) springtime weather coming in now, that might not be as much of an issue anymore and may actually even help me a little.

On the other hand, you wouldn’t want to miss an underlying neurological issue if there’s one there. But I’d be absolutely floored if there actually was. But erring on the side of caution is always best – it’s always nice to hear test results are negative, even if it does leave you with more questions than answers.

Start OverSo that’s one more waiting list to get on. A third. Fourth overall, but I’ve been discharged from the pain clinic now. They decided I have fibro after one scan and threw me out again. Left me to deal with it on my own. It’s like what happened 16 years ago, when I couldn’t walk and the neurologist decided I had “hysterical paralysis” and kicked me out of the hospital. No tests… he just looked at my medical history, which was all about my mental health problems. Several months later, (private) osteopathy successfully treated it because it was a trapped nerve in my spine – lumbar and neck areas. Not Freud’s pet diagnosis. Nice to see that NHS consultants really know what they’re doing…

Thankfully, I have a GP who is at least willing to fight in my corner – as in the corner of successfully treating me. There is no definitive diagnosis and he wants everything eliminated. I can appreciate that, and I am amazed I have found a GP who actually believes in such a thing. Firbo is a fine diagnosis… but this one not yet one of elimination. There is peace of mind to be gained from knowing that’s what it is, because then you also know what it isn’t. Yes, it would always be nice if someone said it’s XYZ and it’s entirely treatable in amount of time. But as long as it’s the right diagnosis, then fibro is fine. Not really treatable – it’s just about controlling the symptoms – but not life-threatening or dangerous or scary. Which is really fine. I really like that. So fibro is definitely fine.

It looks like it might even be another year until I see anyone, let alone any improvement. I hope this is rock-bottom and that I cannot go any further down or get any worse (touch wood). I can’t live on less than half my usual salary for much longer – it’s bad enough that I’ll have to work hard to get back up to that level and start rebuilding my CV all over again. The more I’m out of the game, the harder it will be.

It is irony that when you have a condition or disability that leaves you unable to work, that you get even less money despite actually requiring more? It’s strange how you don’t think about certain things ever, but then they’re presented to you after you end up being unable to manage things, they seem to be suddenly impossible. You need money to get things – adaptors, special chairs, bath handles or shower chair, a wheelchair, a walking frame or canes, having to go places by cab (especially because the buses are not forced to choose wheelchairs over pushchairs – the absurdity of it! – and so you can’t get on the bus even if you wanted to),

They say you apply and receive PIP to help with all that. Except that’s completely bull. PIP doesn’t go towards such things. It goes towards affording your bills and rent, because your ESA hasn’t been fully-processed and the housing benefit only covers 50% of it – because you live in London and the LHA is completely unreasonable. I got this house because I could afford it (whilst working) – and even then only just about. It’s expensive, but one of the lowest priced places I could get – rental prices in London are insane, even on the fringes. Yet the LHA thinks I should be paying only half of what I am… although still refusing to put a legal cap on private rental sector (which should frankly be legally capped at LHA rates, given you need to be able to pay for your house if you lose your job or become too sick to work).

Trust me, I’d much rather be working. Especially because I love and miss my job. I miss it so much, and so bored of not doing anything that’s like it, I even created a whole detailed analysis and breakdown of utility companies and their offers and prices after being shafted by EDF one last time. I ran as much of a details data collation and analysis on all the companies I could find on Excel, and created a comprehensive spreadsheet breakdown of them all, with the conclusion of the best deal based on all the available information.

After crafting it, I realised I really was being shafted good and proper by EDF, so I switched us over to someone else. Who needs meerkats when you’re bored and have a spreadsheet, eh?

 

 

 

 

 


Broken NHS; Broken Me

From one nightmare to another: In the night I am tortured by my mind. In the morning I face the nightmare of being alive.

It’s been exactly one year now since I had to leave my job, got my referrals to the pain clinic and mental health community Access Team, and entered this surreal life of waiting.

I spend all day, every day, simply surviving, struggling to get from A to B. “A” being getting up, and “B” being the evening. I feel like a puppy left in the house all all day all alone. Other people get to go to work, to do something useful, to be productive or helpful or… something. I can do nothing but sit and somehow pass time or entertain myself until everyone comes home again.

If I was a puppy, then I would chew everything in here. Instead, I play games, watch the TV, scribble random ramblings, or mess around with my computers. Anything to while away that time. To get from Point A to Point B… because time is just there and you have to experience it somehow, because it’s not going away. Time is there whether we like it or not, and when you are unable to do anything with it, it is not only wasted, but torturous to endure. Particularly when you are used to the freedom of being able to choose what to do with it.

Struggling to do the basics whilst I’m here on my own is also not so much fun. You take for granted so many things, but never realise it until you can’t do them anymore. What I really miss right now is being able to make my own lunch… a nice lunch, not god-awful wafer-thin ham or turkey in some bread that takes about 20-30 minutes to prepare, with picnic cocktail sausages or mini sausage rolls on the side, because they’re already cooked and ergo easy to make – even I can take a couple out of the package and put them on a plate. I even miss eating packaged sandwiches from shops, having their “meal deals” with Starbucks or Pret coffee at my desk whilst I’m working.

All this has been taken away from me because the NHS can no longer get their act together, thanks to all the cuts and re-modelling structures they’ve been put through. Both the physical and mental healthcare ends have let me down completely, and as a result I am left in permanent limbo. I’m used to being let down by the NHS – despite knocking on their doors since I was a child, they have constantly and consistently let me down. Somehow, though, this really is the stinger in the tail.

 

Breaking Point

Thanks those cuts, the broken NHS, and their incapability to now help those in need, I have spent nearly a year and a half just waiting. Waiting for help. Waiting for a diagnosis. Waiting for… anything.

It is certainly clear to me now that if the government wants people to move from ESA welfare support into work, it’s the NHS they need to look at first. Because it’s taken nearly a year just to get a single followup appointment to see my hospital consultant, it has put me out of work already for nearly a year and a half before even getting to see someone or getting a diagnosis.

When I started this journey, it was pneumonia. Now, there’s nothing “just” about pneumonia – it’s a painful illness that makes you feel like you’re suffocating in painful agony – but in comparison to this, it’s much less complicated. At least it has a name.

Now it’s just “severe widespread pain”. Not exactly catchy, nor a particularly affective diagnosis.

First, it just became some widespread pain. Over time, the pain became worse. Very much worse. Four months after it started, it was bad enough that I could barely move and I certainly couldn’t work, so finally, my GP referred me to the Pain Clinic.

Three months after that, I finally received my first consultation… but by this time it was now already seven months since it first started. I thought that this was finally my way out of the woods. I wish I had known then that it was actually only the beginning.

They were late. I was rushed in and out. He barely looked at me. I was prescribed Pregabalin (Lyrica) for the pain. Neuropathic pain, they called it. But that was the total of the information offered. No diagnosis, no prognosis, and that was the extent of the treatment given. Some meds. An MRI was ordered for diagnostics. That was scheduled for a month later. The next appointment, though? Not for nine.

It was the beginning of more waiting. More time lost to sitting alone, unable to do anything. More time to while away, between the pain starting and some kind of answer. I don’t hold my breath for any “cure”. But something to help – even if it’s just a name to work with, so at least when people ask my why I’m in a wheelchair I can actually give them an answer.

Until then, I just wait.

 

Headless Chickens

No more has been done to help with the state of my mental health than with the physical. My mental health has never, not ever, in my life been anywhere close to “good”. But I don’t think I have ever been quite this bad before.

I do know have the “EQ” (like IQ but with Emotion instead of Intelligence) of a toddler at the best of times (apparently a side effect of the Aspergers…).

Medication has left me completely completely unaware, not attached to realism or what we measure it by – time, place, date, connections. The rest of it has been taken by the pain. I am disconnected and feel like I exist in a surreal dream where there is no time .

I don’t remember when I slept properly last. I’m beyond exhausted, which doesn’t help my mental health – they’re not kidding when they say that sleep deprivation leads to delusions and temporary insanity, and I can vouch for the fact it’s a valid form of torture.

I asked for mental health support at the same time as my referral to the pain clinic. I was referred to the mental health community Access Team. Whatever money they receive is wasted… they have no idea what they’re doing at all. I was shifted, shunted, given excuses and, finally, blatantly ignored.

After a hissy fit about six months later, they finally referred me onto their new ASD unit – which despite several requests regarding assistance to receive a diagnosis, I was never told of before, let alone referred to. It took me fighting for six months to be heard… just another kick in the teeth from this ridiculous organisation.

The ASD unit itself it not a part of the NEL NHS. Hence, I received a consultation quickly and given a followup appointment and effective diagnosis quickly after. They recommended CBT treatment, and therefore I finally received an appointment for an assessment with a psychologist ten months after I first requested one – and only because the out-of-area ASD specialist unit recommended it. Not because of the original referral to the Access Team, who have effectively ignored me the entire time I’ve.

Here’s the kicker though – now I’ve finally been assessed and put on the waiting list, it turns out that waiting list has an average of twelve months. Twelve. A year. After the year I have already waited. I have spent the past year struggling desperately. Breakdowns, meltdowns, arguments, panic attacks, terror, depression… I’ve been through them all without the support or help I asked for a year ago. I’m still waiting for it.

My GP and ESA advisor suggested going to anther arm of the mental health service. I called them, but they simply stated that because I was on the Psych Services caseload they could take me. It was one or the other. I had to be “discharged” from Psych Services before I could be seen by them… despite the fact I have not even been seen once and on a very long waiting list. I was under the impression that this second service was an interim, a counselling service that would help me cope until I could see a CBT specialist. Not so the case. It’s a choice – either a long waiting list to see a specialist, or accepting basic counselling now. It’s a cruel choice to ask someone to make, and I am genuinely shocked that with such long waiting lists that there isn’t an interim to help people whilst they wait.

 

Broken NHS

North East London NHS Foundation Trust seems to be in shambles. There is clearly not only a lack of funding for the amount of people who must require treatment for such long waiting lists, but whatever funding there is clearly isn’t being used properly.

I can neither get a prompt appointment to see the pain clinic, nor can I get any therapy to help me deal with the situation whilst I wait for a solution to materialise for my pain. Not only that, but their lame excuse for a community mental health team is in shambles, offers no services, and is a joke. For all their posturing about what they offer… well, they can’t seem to actually deliver it.

After one year of waiting, and with nothing to show for it, I’m frustrated, disappointed, and hugely infuriated by the lack of help I have received from them… Even with the calamity of the services in North Wales, I had help quicker than that. It was pointless and substandard help, but it was an attempt at help at least.

I get the feeling that the only way I’ll get half-decent treatment is to move. Far away. Anywhere that’s outside of the NEL catchment area. The Post Code Lottery… Even within the great city of London you play the Post Code Lottery now thanks to the whole NHS England Foundation Trust remodelling and 18 Week Waiting list palaver.

I suppose that’s what you get when you run the NHS like it’s a bank.

 


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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