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.
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.
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.
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.