It’s 05:33am on Thursday morning and I have been awake since mid-day on Tuesday. Pain etc. still keeping me up. I went to a brilliant gig earlier on, although I was worried that I’d fall asleep during it due to my exhaustion and sleep depravation, but even after consuming no coffee all day, I’m still here unable to sleep.
Since getting into bed I’ve suffered a mild seizure (just the one as far as I can tell) and other than that pretty much have just been laying there. I’ve taken three sleeping pills since tuesday night and still not managed to sleep. One of those on it’s own used to do it. I think I’m going to need to take two of them tonight.
Pain is unbearable but can’t take any more painkillers, I’m already hallucinating. Every shadow in my room has become absolutely terrifying. I really wish I wasn’t here on my own right now. I’m scared and hurting and so sick of all of this.
This is life now. My task on Sundays from now on will be organizing my meds for the week.
Trying not to get all emotional whilst going through my emergency seizure routine with my parents was very difficult. When I have to take anybody through the list of all the medications I’m on and what has to be done in emergencies, I realise how pathetic and broken I am.
My daily medication intake is becoming absurd.
Oxycodone, Levetiracetam, Pregabalin, Amitriptyline, Zopiclone, Omeprazole & Codeine.
Opioids for chronic pain, anticonvulsants & antidepressants for neuropathic pain, antiepileptics to stop the seizures, hypnotic central nervous system depressants to put me to sleep, proton pump inhibitors to stop all the other drugs from damaging my digestive system. I’m not allowed any new antidepressants until after I’ve seen my new neurologist because of potential interactions with the other medications I’m on, so instead I’m being referred to a psychiatrist and a pain management specialist, in an effort to help me “cope”.
Refilled all of my prescriptions, after which the doctor asked “Is there anything else you need?”. Already on the verge of tears, I fortunately managed to hold in what I wanted to say, which would have simply been the words “A diagnosis?”, said as sarcastically as possible.
As if being crippled and in constant fucking agony wasn’t enough, then they found out I had a malformation in my brain. I tried to deal with that news, but admittedly I wasn’t doing very well. I did my best to rationalise, looking for a silver lining, wondering if the brain surgery might also help with the neuropathic pain. Then today I suddenly was overwhelmed by a strong smell of burning. Now they tell me that’s called an ‘aura’, and immediately after smelling it I dropped to the ground and had a grand mal seizure, after which I lost my hearing for quite some time. They have decided that the MRI scan that I need is now more urgent than we previously thought, so it’s being done tomorrow morning, after which the neurologist is going to decide which anti-seizure meds to start me on.
Crippled. Malformed brain. And now fucking epilepsy.
My life is falling apart.
People who’ve had Chiari decompression surgery call themselves “Zipperheads” for a reason. I don’t think I’d mind it that much. It would be fun to go around in public in a hospital gown with a shaven head with stitches up the back. I’d try to have a really crazy look in my eye, and scare lots of little kids.
In fucking hospital again. Passed out while at work and had a seizure. As the character ‘Dick’ of ‘3rd Rock From The Sun” once said;
“My body is just the vehicle that carries my brain around”
Well, this body is useless. Any chance on a part-exchange for a new one?
Medical fuck ups.
I was sitting in bed late last night, and then all of a sudden I felt somebody put their hands on my shoulder. It freaked me out because it was so unexpected. Then things became worse, because I turned around to see who it was, and there was nobody there. Turned back around, and the room was full of fireflies, other tiny bugs, and occasionally a person.
I’ve changed from a medication that fucked up my digestive system, to one that’s fucking up my mind.
Shit.
In the periphery of my vision, I see an animal that appears to be a llama at the front and a snake at the back. As soon as I try to look directly at it, it disappears.
I think my new medication is pretty crazy
My body clock is basically fucked, and because of that, so is my sleeping pattern. It’s like having a built-in wakeup call, only it’s excruciatingly painful and I can’t pick when it goes off.
I can’t even do anything useful with the time, since I’m so tired and in so much pain that I can’t think straight. I attempted to carry on programming some of the applications for my degree project, but kept making stupid mistakes because my ability to think logically and sensibly is just fucking gone.
At various points throughout each day I can feel different drugs fighting with each-other in my system, like the remnants of the sedatives to try and help me sleep clashing with the ECA stack to wake me up a bit before I have to start work.
I’m tired of this shit. I’m scared. Continuously stressed, anxious and depressed - and I’m really trying to be strong but people are starting to see through that.
Suffering from some pretty intense diplopia right now. There are two of everything. Fell asleep what felt like ages ago, turns out I slept for 12 minutes.
Depressed.
Went to the Doctor’s today to follow up the appointment I had with a musculoskeletal specialist yesterday. Now I’m being shifted onto another different painkiller, still opiate but now an extended release. The Doctor was reluctant to give me any lower dose immediate release painkillers for breakthrough pain, because she’s worried that the combination of those and the tricyclics will put me into some kind of permanent drowsy state and I won’t be able to function. The new painkillers are so strong and obscure that the pharmacist had to put in a special order just for me. I know exactly what this is leading up to. I know the combination I will end up on. I’ll have the insides of a heroin addict and I’ll feel permanently slightly stoned. I’ll experience mild chemical-induced happiness and euphoria, periodically interrupted by horrifying pain and crippling bouts of treatment-resistant chronic depression.
Fuck this.
Fuck all of this shit.
I do not deserve this anymore.
Algophobia
al·go·pho·bia
Noun; Morbid fear of pain
Etymology; From Ancient Greek ἄλγος (algos, “pain”) + -phobia
Even more hallucinations. There is a Vietnamese man hiding in my my room somewhere, I can hear him. I can also hear also hear a familiar female voice from my past saying my name in a patronising and aggressive.
Things are moving, I can seethem out of the corner of my eye.
More hallucinations today. In the last few minutes, I thought there was a newsreader presenting a news report from my computer desk, and also my old dog, Sally, sitting on my bed, but she’s only visible when I’m not looking directly towards her.
Somebody just punched me in the shoulder, there is nobody here.
The chandelier is a giant spider, and it’s babies keep on hatching and climbing around everywhere.
Fuck my life.
I am Adam John Williams. Final year Music Technology Specialist student at London College of Music. I've had to defer my final semester until next year since I've had a shitty year due to epilepsy, chronic neuropathic pain, and a newly-discovered brain malformation, but I still find time to have nerdy music-related adventures, and I'll document those here. For information on my custom music & video performance controller, see 