My studio is a little out of the way. East London, Stratford city, not the part that tourists or hipsters go. The part next to the court, the rehab, the beauty shops, the children’s centre and the empty sushi café that’s certainly a front.
You will see the impact of a decade of austerity cuts, my friend that dances to his own tune by the benches, the lady that sings gospel that we are all blessed to hear. The shitty drummer, that never seems to get better, the kindness of people, just getting by with getting by.
I’ve only recently got windows into the sky. Gargoyles top the building. Rumour has it, it was a TB hospital after the war. It’s one of the last few ‘affordable’ art studios left in the city. That’s changing quick, rent hikes disguised as increased energy costs.
It has no heat.
There are no lifts.
It’s my sanctuary.
It’s where I processed all the hospital with the bubs.
The passing of friends & family.
It’s where I learned to paint.
Where I learned to funnel my rage, into a calmness to face the world.
It’s one of the few places, I don’t question whether I am an artist or not. Or if Im good enough, or if i should keep going.
It’s what became my focus when I thought my existence had ended. When the mind barely returned with body broken it was part of the chalice of meaning.
So here I am. 29 months after my first Covid infection.
6 months after my second.
I’ve been trying to write a succinct and hopefully entertaining & informative account of the last 28 months. I’m at 10,000 words and none of it is funny or even coherent, actually it’s just down right depressing. Talking about medical gaslighting for a disease that half the population is unaware of as numbers increasingly go up, is not on the ‘things to do to bring joy into your life’ list. But I wanted to have some kind of account of things. The trouble is, most of it I wrote when my brain was on fire. Looking back on the notes I made, as my short term memory was blown, I took daily notes of symptoms, so if i ever did get a hold of a specialist I could try to explain what was going on. (I am still on the waiting list to see a Long Covid clinic)
So in the meantime, I’m going to vent here, try to make sense of things, until my super polished and incredibly informative, hopeful and helpful long format cheery article is ready.
But the problem is, many of these notes just consists of the word BAD scribbled in marker over an entire page, or BAD, ZOMBIE LEGS, BRAIN DROWNING. Also, can’t say I’ve had the most positive experience with the medical community over the last 2 years. Fair enough, I am a total OG when it comes to LONG COVID and research is finally moving along, but the thing about being really ill, is it takes all of your energy just being really ill.
Covid is a full body shit show, and going from one specialist to another will just give you the diagnosis that they see within their field of expertise. But what made me chuckle the other day on some #LongCovid thread I responded to, was someone asked me if I had tried TUMERIC & PEPPER? Fuck me. I have been in and out of hospital for over two years, my brain is inflamed, I have 24/7 tinnitus, my heart sky rockets if i stand up, my memory has been wiped, yes as you can read some words are coming back (well maybe, who knows but this is currently the best it’s been in a very long time and I can’t tell if i am making sense or not).
Have I tried Turmeric & Pepper? To me is the equivalent of the first neurologist I saw, who literally patted me on the head and gave me a prescription for PROZAC. I could barely speak, I couldn’t stay awake for more than half an hour at a time, I couldn’t read or watch TV as it was too taxing on my nervous system, my inner dialogue had completely disappeared, it was literal a soft breeze of white noise tumble weeds going thru my mind and my heartrate kept jumping up to 180 while i was just sitting down staring at the wall. Have I tried Turmeric? Fuck me, I’d give myself turmeric enemas if I thought that would help!
That’s the problem with EVER asking a GP for help if you have depression/anxiety. It is forever a red marker at the top of your file that every other medical person you ever see for the rest of time, will be the first and often only thing they see. Yes, I had a wee bit of depression in the past. I was in and out of hospital with a child that required over 60 operations and procedures in a 10 year time span, not including the weekly trips to ER when we were out of hospital and the endless post surgical infections they had and a surgery that went very wrong and caused stomach paralysis. So yeah, I am familiar with anxiety and depression but this wasn’t fucking it.
So there seems to be an entire cottage industry of ‘wellness’ advocates luring the desperate into ‘treatments’ for Long Covid. That’s what happens when people are desperate, gaslight and have lack of societal support. They will try anything. Anything to give any hope or even a tiny bit of relief. That is why so many of the medically vulnerable were pushed to getting the Astra Zeneca in March 2021, the narrative was that is was curing #LongCovid folk. Flash forward a year, and 70 percent of people reported a negative reaction or vaccine damage to the AstraZeneca vaccine. (I am not anti-vaccine, I am pro-information). I got this from a GP I spoke with a few months ago as I needed to see if my heart acting like it’s running a marathon every day was doing any permanent damage, as I have a kid, and would like to make it until they are at least 35 years old.
So, as I didn’t want to pile my rage on some well meaning internet bystander. I thought i would go through all of the things I have currently been diagnosed with and all the things I have tried to get me to some kind of putting the fun back in functional level.
Overall symptoms: (at the time of writing, I do not have all of these) Shortness of breath (SOB), exhaustion, no appetite, brain fog, lack of concentration, weird heart spikes, tinnitus, my body is on fire, insomnia, killer fucking headaches, zombie legs, weird arm spasms, serious paranoia, inability to form words, inability to understand what people are saying. Dizziness, vertigo, the barfs.
So far I have seen 2 neurologist, 2 cardiologists, pulmologist, vestibular dude, cranial person, functional medicine doctor, 1 shrink. I am still on the waiting list for a Long Covid clinic.
I have been diagnosed with:
auto-immune disorder, vestibular migraines, POTS, tachycardia, adrenal damage, orthostatic intolerance, tinnitus, fatigue disorder ME/CFS, dysautonomia, MCAS. All of these file under the standard Long Covid umbrella.
I have been prescribed:
modafinil, benzos, all 3 of the histamine blockers, anti-sickness drugs, propanol (beta-blocker), a brief attempt with prozac, the one that tightens your blood vessels but makes your head feel like it’s covered in ants, sodium pills, zolmitriptan, famotidine, fexotidine, ketotidine, whatever that anti-viral for humans not horses drug was.
On a non pharmaceutical vibe, I have tried the following. Some of which I am currently on everyday.
Turmeric & pepper shakes, turmeric in everything, fasting,16:8, no wheat/dairy/gluten, no processed foods, no sugar, no caffeine, (I don’t drink, so obvs no alcohol) Alpha Lipoic Acid (game changer for brain fog), Vit D, vit C, L-theanine, NAC, Vit B3,Vit D3, Magnesium, Iron (because I’m anaemic anyway), irish sea moss, multi-vitamin, candidastat, banderol, liver detox, chlorophyllin, energy plus/adrenal optimizer, pro greens, 5-lox inhibitor, curcumin elite
Acupuncture, that helped. I was getting my period 20 out of 30 days a month. That helped that. I did a Dyanmic Neural Retraining Program, which tbh was good for not feeling like the world was ending everyday, however it’s claims to be able to cure POTS, imho was a little overstated. But it was good to help retrain the brain. As my biggest issue has been admitting that I am unable to do things, trying to do things, making myself worse and on and on and on.
So yes, well meaning person on the internet, I have tried turmeric and pepper. But thanks.
Woke up feeling like my world is completely crumbling into dust. Such extreme hopelessness.
A month ago, I got an email, inviting me to enrol into the accreditation level of my counselling and psychotherapy course. I’ve deferred for the last 2 years due to health issues due to #LongCovid, I manage my life in such a way, that I thought it was a possibility. I’m seeing a new functional medicine man, whose looked at my blood, seen my misshaped red blood cells and says I’ve now developed an auto immune issue.
I have been given a bucket of supplements, larger than the skip it’s gonna take to get rid of all of Carrie’s wallpaper. So I had about a week, where words, big words, came back to me. Where I could participate in twitter spaces, I could engage in once lost resources of the brain. I could think deeply and remember those thoughts. It was like breaking through another glass barrier between myself and the world. That parts of the old me were re-emerging.
The thing is, when your brain gets wiped, your new state of consciousness isn’t aware of the missing parts, its working with what its got. So to see a flicker of what once was, the person friends claim to miss, was pretty great.
So being all brave, I went to an daytime NFT conference thing in LDN. I emailed the venue to see if there would be seating and lifts. I contacted the organisers. NO response. It’s a few talks, I can do this right? Me and my better brain can handle going out in public, by myself in a environment that is just the IRL version of the weird and wonderful shitstorm I’ve been participating in the last 16 months? Right?
I couldn’t have been more wrong.
There’s a reason I think I can function on a day to day basis. I keep my environment very controlled. I don’t have to stand.
Getting there, there is a line. I take a knee. Staff get me a chair. There’s no lift. I slowly get down the stairs. I go to the conference area. it’s loud. Really fucking loud. There’s some crazy decibel fans going on, and sound checks, and music and lots of people talking. I have my earplugs, but forgot the BIG BETTY cans, (the construction style & very attractive noise reducers I have come to depend on). First time I have left the house without the cans AND ON MY OWN, WTF WAS I THINKING?
My arm starts to twitch, i try to breath my way out of it, the lady next to me is also not digging the sound, she explains she is autistic, she is going thru some masking rituals, i feel like i am in good company, i keep my bag on the chair next to me as I can’t control my arm and i don’t want to hit someone in the face.
My system is on full red flag warning, i should have got up and left. really. But I don’t’ think I could have made it back up the stairs.
The loud fans turn off. Calm. But my system is now overtaxed and I just want to go to sleep. The talk is ok. I was expecting a little more in-depth discussion. I need to move.
I’ve totally forgotten that I get audio/visual overload and when that happens my body doesn’t respond to my brain. Whether it’s the POTS, dysautonomia or what, I don’t know, but now my balance is fucked and so is my depth perception so I have to cling on to walls to get around the venue. This feels as embarrassing as fuck. I want to cry. I find places to sit. I talk to a couple of dudes. (I didn’t hear the word BRO once during the 2 hours I was there). We talk decentralised vs centralised, PFP’s & that by being early, means that Web 3 is at the dial up modem stage of the early 2000’s and that this shift in technology and accessibility is totally in it’s larval stages although currently being seen as just crypto-gambling for jpeg playing cards.
The SUTU, NEONZ exhibition is beautiful. A fully immersive beautiful vision of what many of us oldies thought Tron and the promise of the metaverse may be. But there is nowhere to sit and I am done sitting on the floor.
In some fantasy, I was hoping to find human connection to many of the people that I engage with on the internet. Those that unknowingly have kept me sane and distracted. One lady i spoke with was cool, but wouldn’t give me her IRL or twitter name, out of fear of doxing, so we just refereed to ourselves as Jenny1 and Jenny2.
The ART was displayed really really well. The Poetry AI section was good. The other workshops although good, required standing in line, so not something I could participate in.
The ART on display was of really high quality and deeply inspiring. Most of it far removed from the top 100 trending charts on OS. Also being sponsored by TEZOS, which is currently the most carbon friendly blockchain. So as far as an artistic experience went, it was inspiring.
But the reality of it, left me a little heartbroken. I’ve been living in a stage of total denial. I am not well. I am partial disabled and that really fucking sucks. It’s maybe the 2nd time I’ve been out out in about 2 years and i did it on my own. That was a huge mistake. There’s a reason I spend most of my time in bed or at my studio.
What I’ve realised is that there is no way I can go back to school yet. That little 2 hour jaunt cost me 2 days in bed. I can’t process that much information. So yeah. But hell, I made it out. l pushed a boundary and now after a couple days of brain damaged exhaustion, after 2.5 years, I am maybe ready to admit that I am unwell.
I think i have been through this stage before. But I can’t remember. So going to talk to the enrolment advisors on Monday, might need to defer again and go back to trying to figure out how to get myself out of this ever evolving state body and brain limitations.
and to keep making ART but staying off Twitter. If I’m going to scream into a void, I’d rather do it with a higher character count.