Tag Archives: NEL NHS Foundation Trust

Never-Ending Nightmare

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I cannot even explain how exhausted I am. Meltdown after meltdown – horrific ones – just don’t seem to ease, running into each other, causing complications that cause even more… It a nightmare that doesn’t seem to end. Pain, confusion, exhaustion, [on top of my usual] fatigue, disorientation, pure terror.

All apparently starting from a generic cold/fine virus I got… which  I completely missed, because the symptoms are just like a Fibro flareup: extreme temperature changes (often caused by my pain), aches, stiffness, fatigue. But the grogginess and disorientation that came with it should have been warning flags. The unfortunate thing was I was also in the middle of a rather big flareup at the time… It’s all been a nightmare.

I “black out” during meltdowns. I have no idea what’s going on, what I’m doing, what is happening around me or to me. I also don’t remember afterwards what happened either. There’s simply no memories being put down, so I haven’t a clue. This time, after I didn’t “come round” properly from it, I though it strange… then after a while I found bumps on my head, and when someone checked my head, found the top of my head not only had a few big bumps, but it was also bleeding from some cuts on it. Then I realised what was wrong with me… and old memory and familiarity: I had concussion. Groggy, slurred speech, confusion, disorientation, sleeping constantly (I never sleep; even at night I barely sleep)…

I’d been through this when I was 16 and had a horse riding accident, banging the back of my head quite badly and knocking myself out for a few seconds. I fell off backwards, hitting my head first and hurting my neck while I was at it. My back, hips and sacrum came down next, damaging my lumbar area. The cost of that accident has been lifelong… and the memory of concussion was one of those. It was a jarring realisation, but at least I knew what was causing it.

I’m lucky my mother’s a nurse. She checked me out, was happy(ish) with what she saw – pupils reacting and even, BP normal (for me, anyway), pulse fine, general consciousness OK apart from grogginess and some confusion, memory was OK (didn’t forget what was going on, meltdown notwithstanding). If she wasn’t concerned then I was not either – although to experience the side-effects is pretty scary. But I’m experienced enough after working as a Nursing Assistant/HCA for many years to know what’s right and to trust your nurse, and she is definitely one of the best (no I’m not biased, I’ve worked with many of them over the years and just know a good one…!).

 

Learn The First Time…

This same thing happened before, with the due to the very same problem. I missed it again, and I wasn’t looking after myself very well. I missed another trigger-point, the warning signs, everything.

Now there’s a new(ish) “rule”: Juiced drinks or smoothies every day, especially smoothies including vegetables and extra minerals if unable to eat properly (the pain depresses or muddles my appetite quite often). Back in London, I learned to use this rule and stuck rigidly to it, and my health was pretty good. I didn’t miss a day of anything from cold/flue viruses for the longest time, and even my asthma and temperament were better regulated. This is now being reinstated – I’d rather be healthy and broke than go through this again. Ready made pure juices smoothies like Innocent, Cold Pressed, Tropicana, etc., are difficult to afford but are clearly vital.

It’s hard to learn the triggers – I’m not exactly an “old” dog, but after spending over three decades trying to ignore and deal with certain “idiosyncrasies” of myself, it‘s so very hard to realise I have to be very aware of myself, and to understand that I can no longer be complacent or dismissive of them: they’re signs and “idiosyncrasies” of the Aspie in me, and they need to be looked at and checked for general trigger points. Illness has always (unknowingly, but quite clearly in hindsight) been a big trigger point for me. Add that to already learning to deal with another illness, a severe and debilitating condition, and it’s just going to be bonfires and gasoline. Taking the viruses out of the equation is an absolute necessity. One horrible illness at a time is enough for me, thank you very much.

 

Learning Curve

Learning all all these things comes at great cost. Emotional turmoil. Relationships. Exhaustion. Coherency. Injury. Concussion…

It sometimes just doesn’t seem fair that it’s possible to leave and ignore someone with such difficulties without assistance. I’ve been ignored or dismissed, or just lost in the system, my entire life – and it’s no different now. When I was a child no one had even heard of Asperger Syndrome. By the time I got the diagnosis I was too old for help – the buzzwords surround only the children these days, and adults are ignored. It’s even worse in North Wales… Everyone is ignored. Even the NAS (National Autistic Society) has virtually no resources invested here; everything is down the south coast, around Cardiff and the Brecon Beacons. They can’t even answer the phone.

Don’t even get me started about the local NHS and Betsi Cadwaladr health board… They haven’t even heard of their own backsides, and are medieval in their treatment of any psychological/neurological/mental health situation. But then, North East London Foundstion Trust was worse… so it seems a little petty to complain. At least coming to this area was a microscopic step up, though I miss my old GP immensely. He was a real gem when this all started and went to hell in a hand-basket.

This learning curve is painful. Physically and emotionally. It’s destructive. It’s mistake after mistake… A never-ending nightmare of never-ending meltdowns. Exhaustion, pain and confusion causing such extreme fear and terror they cause unimaginable meltdowns that are clearly very destructive. I am apparently can pose possible danger to myself and others, frightening me even more – so not helping there, becoming a trigger in and of itself. I am lost and I do not know what to do.

I have more coping strategies. I have more information. I have piles of beanie toys, which help me try and stay calm and comforted. But there are always new or unexpected triggers. Or everyone else is tired and not able to deal with me. They’re mean and get horrible with me, making it worse, escelating things, scaring me even more. I feel so alone, even more so when this happens. I have nowhere to turn and no one to really talk to, no one to help, no one to give guidance regarding understsnding my ASD and how to deal with it and Fibro.

The meltdowns were actually quite well controlled until I got ill [with cold/flue]. So I feel really bad it slipped past me – yet it may not have if I wasn’t already in a horrible fibro flareup already. But that probably helped cause it, destabilising my immune system and not allowing me to eat properly. I did not turn to juices/smoothies to increase my nutritional intake, and thus became ill. When I was reliant on them I had no issues – somehow the significance of this fact passed me by, not equating it to being able to help me now.

All I can do right now is hope that each costly mistake will have a return for the cost. That lessons will be learnt, better strategies or help will come from it. That there will be something to offset the hefty price. I’m currently paying for it with nightmare days, broken relationships, a broken family, multiple seriously-painful bumps on my head, multiple cuts on my head, concussion, emotional fragility, inability to cope, mild depression, suicidal thoughts, extreme pain, feeling confusion, feeling lost and alone.

And no, I still haven’t received any help. But then, I never have… so I hardly expect any now.

I keep asking, keep looking, keep hoping. But I’m starting to see it’s really nothing but a futile idealism now.

So I just have to keep paying the price… But my account is now severely getting into debt…

 

KeepGoing

 

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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.