Wed, 22 Feb
00:15 sorry about tonight. I think I re-fucked my head maybe
00:16 I'll chat to you tomorrow if you want
00:16 let me know if you need anything
I started feeling unwell on tuesday the 21st of february.
at time of writing that was about four months ago, 123 days.
close to 3000 hours, 2952.
I have spent probably 95%
of my time since then,
or around 2800 of those hours, in this room.
on the thursday of that week my symptoms got so bad that I called 111, the non-emergency number.
on thursday the 16th I had hit my head in the stairwell of my flat. I was told to monitor the situation for twenty-four hours and given a list of symptoms to look out for.
if any of these symptoms developed I was to visit A&E.
next week my symptoms got so bad that I was writhing in pain and unable to move from my bed, the beginning of a long,
long stint in this room. again I called 111 and was told to go to a nearby hospital. we took a taxi at around midnight and waited in the waiting room for around six hours,
considered a short wait. a doctor performed a basic assessment on me and concluded I needed an MRI, but was unable to give me one as the MRI team does not work nights
and it was currently six am. in lieu she wrote a letter of referral to my GP illustrating the need for such a thing. I have not received one.
what did come out of that letter, some weeks later at the GP, was a referral to the neurology department, which I was told would take sixteen to eighteen weeks.
some time later I had a particularly bad day and called 111 once more. they were, apparently, extremely surprised to hear my recollection on the phone, a recollection that
at this point was only three weeks long. the operator asked me how my driving has been affected, as I mentioned that I dropped my keys prior to hitting my head. I don't drive.
I was asked if I had taken any painkillers. I said yes, two at noon that day. I was asked why only now I was taking paracetamol when the condition had been affecting me for weeks.
I explained I was referring to today. I am not quite braindead yet.
I was told to go to an out of hours gp appointment in the south side of the city.
after travelling there I was told I was more or less fine and to just keep an eye on it. give it time.
some time later at a gp appointment where I was illustrating the fact that my
neck/throat was closing up and throbbing, as if throttled, I was told I probably had acid reflux. when asked about the neurology referral I was told there was nothing the GP
could do for me as it was being processed and to just wait it out. I was informed that I could be referred to the community brain injury team. when asked what this team did,
or why I would need to be referred there, the GP said that she didn't know anything about it or what it did or what was wrong with me or what they would do but why not.
at time of writing it is saturday the 24th of june, 2800 hours of room time later and I have been abandoned. when speaking through webcam to the person at
the community brain injury team, I was questioned as to why I had this appointment at all. they assist people with long term brain injuries in their day-to-day living,
connecting them with services that help them cook, exercise, get transport. I said I don't know. she asked me:
"what is wrong with you exactly"?
I said I don't know. I'm not
a doctor. she told me I would be lucky to see the neurologist in 18 weeks. most are on the list for over a year. she is not a doctor either, although has become the only person interested in what has happened to me and continues to schedule appointments even though I am not
exactly the target market for their services.
she does what she can.
in june of 2021, over the course of a few weeks I developed a ringing in my ears. over time, this became full blown tinnitus. at the time, and prior me becoming accustomed
to the constant mental battle of this condition, it was a constant screech, loud enough to interrupt my own speech, taking over my thoughts.
needless to say this was rather alarming.
I went to my GP, and was told that it would probably go away soon. if it doesn't in two weeks, come back and see them. I still have tinnitus. two weeks later I called them
and was told that it was not yet a long enough period of duration to be concerning.
call back again some time in the future.
at the time I was thinking of suicide on an hourly basis. I was not
sleeping. when I "woke up" in the morning, or rather decided to get out of bed, the first thing I did was down a shot of vodka. this was not a "healthy" coping mechanism
but people can criticise your coping mechanisms when they go through the same shit you do. it worked for me. panicked and wanting to save my own life, with the help of my
partner and my family we scraped up enough money for a private appointment. I had never seen a doctor's office so posh. I was told that an incident I had had around the
time of onset could have contributed to the emergence of this tinnitus, and that it was rather essential to begin aural steroids immediately. it was in no way guaranteed to
help, but it was vital to adminster this now as there was some percentage chance that this would alleviate symptoms I would live with for the rest of my life. I had seen the
doctor on the penultimate day of the onset window where this medication was effective.
some months later I saw my GP again, and mentioned it in passing as a condition I now
lived with. I was told that there was a tinnitus support service that they could refer me to that could help with the psychological effects of the condition. some
more weeks later, I received a hastily-assembled pack of papers in the post with poor quality clip art telling me that if I was distressed by my condition,
I should consider activities like "doing a crossword" or "taking a bath", and that further engagement with the service, such as the ability to speak to someone about the
effects of the condition on my life, was contingent on my filling out of a chart where I noted down each time I did a crossword or took a bath, for a month, then enacting
the other option, such as taking a bath had I relied on crosswords the previous month and found them unhelpful. after these two months there was a possibility of me speaking
to a human being about my distress. I threw it in the bin.
in december 2021 I received a letter informing me that my appointment with the audiologist I had wanted to see
initially was booked, and would take place as a phone call in june 2022. in march 2022 I received another letter informing me that the phone call had been delayed until october.
in october 2022, I was on a train to wales and received a phone call from an unknown number. unusually I answered it anyway, and was informed that it was the audiologist for
the aforementioned appointment, which I had by now forgotten. I informed him I didn't live in that city any more and had moved somewhere else. he said "oh, nothing I can
really do then. good luck".
in january 2020, I was admitted to a psychiatric hospital. I was diagnosed some years prior with (not that I really believe in such a thing) bipolar disorder. regardless of
the diagnosis, I was suicidal and was a risk to myself. during my two weeks in the psychiatric ward, I met a man who I won't name. a funny, kind, smart guy. he was a friend
for me in there, we ate breakfast together.
when we met, we did the standard ward shit -
hey, what's your name, what are you in here for?
I explained "bipolar disorder" (not
knowing better at the time) and he replied back "nothing". I laughed as this was not uncommon, saying what do you mean nothing? he said literally, nothing.
there is nothing
wrong with me.
I have had my troubles sure, but I am as well as I've ever been right now. I was living with my mother and the situation became untenable, so she used my
previous medical history to get me committed against my will. upon arriving here, they quickly realised I was fine, but they can't discharge me because I don't have an
official address as my mum won't have me back. they keep talking to me about finding me social housing, but nothing ever happens. I have many people to stay with, but they
don't consider that to be legitimate. I've been here for five months.
I'm sure you believe you might navigate the system better than this man, that there are channels
to go through and such. inside, you get five minutes once a week to be presented before a doctor and have any concerns heard, but also your condition assessed. any "abnormalities"
in your behaviour (anger, silence, weeping) are obviously "taken into account" concerning your "mental health".
inside there was an "activities room" that was locked
as it contained risky material. no one was allowed in there as it required supervision, but the "staff" were stretched so thin no one "had the time" to supervise. thus
the only activities undertaken were quiz shows on the telly, vaping and asking the staff to charge your vape.
one friend in there was eternally silent.
through someone else, I learnt his name and used to say hi to him in the mornings in the hallways. he didn't say anything back but he did smile in those interactions.
he was a nice person. on one occasion he began striking the wall, and a radiator. he was screaming, tears streaming from his eyes. from what I could gather his brother
had been killed in the arab spring. he was sternly told to shut up, be quiet and calm down or he would not be allowed outside for the rest of the week.
this is merely a recollection of a brief, and eternal period of my life. the first section comes from my notes so I don't double dose. my memory is gone. the records get fuzzy at the end cause I gave up.
I am twenty seven years old, but inside I feel as though I might be 22, or fifty, with the stolen and the added years. I wish, for you, I had my usual insight, or even humour to end on, but I can't - I think I re-fucked my head.