Nightmares and horribly strange dreams disturb me through the nights. Waking up it feels like I’ve been beaten half to death by an angry mob, then hit by a train and left to die. The waking nightmare I dearly wish I could wake up from, but never can.
Every day I have to face somehow dragging my bruised and battered and broken body about… Except those invisible injuries are known only to my brain; they’re not real. There are no injuries. No bruises. No broken bones. Yet my brain feels every one: every cell and bone and joint and muscle in my body screaming, leaving breathing a difficult and laborious task. Walking nearly impossible without screaming pain searing through my head. Standing; a parlour trick to manage without falling back down again: stumbling about, clinging to things like a child, or wabbling about with a cane like someone three times my age. Worse. My grandmother is nearly 95 and in a much better condition than I am – and she’s hasn’t had the easiest of times herself.
I’m about to turn 34… but you may as well put a 1 in front of it. I’ve nursed people in care homes who were in a better condition than I. I’ve done quite a lot, though, stuffed a lot into those years. Maybe too much, helped whatever this is along… I’m glad I did though – at least if I can’t do anything now, I know I had a good time back then. Galloping on horseback along the beach, flowing yoga ashtangas in the house, dancing and singing leading roles on the stages of the West End, songwriting and classical singing, walking miles with Doggy. Memories… Distant and fleeting, but I know I did them. Once.
But… My brain cannot deal with the fact they’re now gone. My brain cannot deal with not knowing if they’ll ever happen again. My brain cannot deal with this level pain: no creature should have to deal with this level of pain. My brain cannot comprehend the fact I somehow fell down this rabbit hole overnight, and can not only never seem to get out, but keeps falling further in. I want to click my heels three times and call for home… but I already am. But within some strange existence. One where everything I took for granted is now… well, it’s barely even a memory. I don’t have much of one of those anymore, either.
Life is a haze. A strange and surreal dreamlike existence. One where where hours and days and weeks, even months, blur together into a dreamlike haze of… ether. I exist now, with very little awareness of past and future. The haze of “this very moment”… a bit like being rather drunk, maybe under the influence of other things (but I wouldn’t know about that… I get too much of all that from the pharmaceuticals I’m prescribed). You’re not really aware of anything, or where you are, or who you’re with, or if what you’re seeing is really even real. It’s unnerving… scary sometimes. It comes from the medication, I know, but that doesn’t really make it much better.
From one nightmare to another, it feels like I never sleep… and I never wake up. Exhausted, in pain, dazed and confused… yes, I feel sorry for myself quite often now. It’s a new trait that makes me want to kick myself – and I probably would if I could. It’s been 16 months since this started. It’s one year since I emailed my boss to let him know I could no longer do my job. Nearly one year since my last contract came to a sad end.
It hurts… as much as the physical pain does. So I try not to think about it. It’s hard not to. I’m stuck at home, feeling useless. I can do a bit of tidying away… that’s the extent of the housework I am able to do. With an extraordinary amount of help, and by sitting on a bar stool (a makeshift “perching stool” that was way cheaper than getting a real one) I can cook my specialty food, every now and again, with the help of alcohol to dull the pain further so I can manage it.
Walking with the dog has now been taken away from me too. After a few weeks of not managing it, I tried one last time the other day. The result was the most unimaginable agony that I had experienced since I started taking Pregabalin and Devil’s Claw. It was, well, indescribable, I suppose. Way off the 10 scale, and well into the 1000 scale, I think. It’s been two, three days, and the extra pain is still there.
It’s the only thing I had left. Now that’s gone, too. I really can’t go out on my legs anymore… Even to walk a few steps outside, I need2 sticks, and apparently I can now do no more that walk a few steps like that… but even that is painful and difficult to do.
They don’t know what’s wrong. I don’t know what’s wrong. It’s the not knowing that is the worst thing. the least they can do is look. Test. Check. I’m still waiting for my follow-up appointment for the pain clinic. I’m counting down the days. The clinic appointment is on my grandfather’s birthday… there’s a superstitious part of me that wants to believe there’s something in that; that it means something good, or at least significant. After all, you never know. Another 3 weeks to go… after 8 ½ months of waiting already, you’d think I’d be used to the wait. This last stretch just makes it feel like even more of a joke. I’ve had nothing but an MRI scan. The only thing they have done is prescribed Pregabalin. Cuts to the NHS have made it impossible to have the service required and expected. No one should wait nearly an entire year to be seen for a followup appointment to an undiagnosed problem that’s degenerating quickly.
Until then, I will continue to live my waking nightmare. Suffer the dream ones and exist in the real one. Maybe one day, I will get to wake up.