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.
x x x