I started feeling unwell a few days ago.
I started a fever 8 days ago.
I tested positive for Covid-19, 6 days ago.
I’m still testing positive today
It’s back.
It’s fully symptomatic
It’s not just a cold
It’s back-to-back with my Long Covid almost-recovery
I'm still on a mental tightrope
I still plan to fight it.
I will win.
Yesterday, The Husband came back from work and immediately isolated himself. He had a running nose, and felt terrible. He took the covid test twice, and was positive. He'd had his 4th jab in November, just as the booster programme started.
After the Great Disaster of November 2021, when we isolated as a family after Tara got Covid, and I almost ended up dead, and suffered the ravages of post covid complications thereafter, we had agreed that next time we would isolate independently. So The Husband is in a room with a bathroom, while I'm sharing the rest of the home with Tara…while providing room service. I don’t resent doing it. To me, the act of voluntarily isolating oneself to prevent harm to others is very rare in these times. Last year (when I was at my most vulnerable) was an eye-opener. No one - my own parents, siblings and other family members - adjusted their lifestyles to accommodate me, even a tiny fraction. I felt vulnerable and irrelevant, and was even judged for my choices of distancing and masking.
I realised in that moment…this was not my herd .
It had taken me a lot of courage, and suffering to make the journey to see my family after some of my post-Covid conditions subsided. I assumed they would be happy and grateful to see me alive, maybe fuss over me, just a little. But no, none of that. In an instant, my lifelong attempts at getting affection from them vanished. Just like that. Sometimes it takes decades to arrive at the realisation that people are the way they are. You cannot work your way into their lives. No matter what you do. This time it was different when I left them. I spoke my mind, clearly and calmly for the first time in my life, and left feeling light and liberated. Their herd can think what they like, and say what they like. I’ve walked, and the view ahead is brighter than the shadows I left behind.
No matter how much or how little solitude we like as people, we all eventually belong to a herd. Not necessarily a biological herd. The person who says hello to you at the library, the young lad who makes your morning coffee on the way to work, your partner, your children, your pet dog/cat/ferret, your friend who you only meet to go on a walk with, the un-named parents at the school gate, your yoga teacher, the regular robin/magpie who visits your garden. They all are the herd we develop over a lifetime.
Much as we annoy each other, The Husband, Tara and I are a herd.
So I'm preparing a tray of hot food and drink for him, even as I’m recovering from a nasty vomiting bug from a week ago. I assumed it had cleared up, but it’s not gone fully. Luckily the crushing abdominal pains that had me writhing in agony for 2 days, disappeared after a day of vomiting. Now it’s just a confusing low grade state where I know Im not fine, but I am functional.
In all this Tara is unimpressed and uninvolved. I will say this emphatically. Upbringing is not only about telling a child what is right and wrong, or telling them what they should do - their rights and responsibilities. There is a very large part of any child that is inherent and inborn. We, as parents cannot beat ourselves up over it. What we can do is continue telling them about the rights and wrongs, but more importantly showing them through our actions what love, caring and sharing looks like in a herd. That is all we can do.
When an unyielding sense of responsibility meets a grandiose sense of entitlement, is abuse inevitable?
Random low grade fever
Intense Fatigue
Burning eyes
Banging headaches on a different level of pain
Chills and cold patches on the back and chest
POTS
Tachycardia
Bradycardia
Severe Breathing difficulty
Sharp, burning pain inside chest. Crushing weight on chest.
Memory loss
Slurred speech and inability to find words.
Losing train of thought mid sentence.
Repeating sentences.
Tinnitus-Double layer. First layer is constant, second layer is sporadic
Pulsatile Tinnitus
Blood blisters inside mouth and inner cheeks
Rash
Fizzing body
Lightheadedness
Severe joint pain, hips, knees, shoulders, feet. Also neck pain
Problems swallowing and choking while drinking
Disruption to period
Bladder problems
Digestive disorder
An ominous sinking feeling of foreboding and dread that comes on suddenly.
Inability to walk more than 2-3 steps
Extraordinary extreme nightmares on some days
It was ALL of them, ALL at once.
This was me. This might be familiar to some people; others may have more or less. I will only say this. The very least we as humans can have for one another is compassion. You don’t have to walk in someone’s shoes to show compassion. The same suffering is dealt with differently, by different people. Some people may have no option to rest and figure it out. They may have to go to work and look after others while going through this impossible suffering. What they don’t need is judgement, scepticism and over-simplistic advice, even if is well meaning.
"Long Covid?” sufferers have invisible suffering. They are usually so shell-shocked by the assault that they won’t say much to you. It took me a lot of courage to face writing this. Ive never been able to verbalise and explain to someone who casually asks me, what was wrong with me. There is trauma attached to this experience. If possible just hold them, be there, ask how you can help, believe and accommodate your friends and loved ones.
I am writing this from a place of gratitude. I understand that recovery from "Long Covid?” is very random. I have worked very hard with conventional and unconventional methods. (I will write about what I did, and how I faced each one of the above). I understand that there is a massive element that you can call Luck, or Miracle. Most of all I understand that there are people out there who are probably working much harder than me, and for a much longer time. They haven’t improved. YET.
From a very humble place, I share this with you. This is not medical advice. This is an account of what I did. Consult your medical practitioner and your specific health dos and donts before you set out on your journey.
Give yourself a timeframe-1 year at a time, extendable indefinitely.
Make yourself a hero.
Expect a recovery every day. Go to sleep in anticipation of a recovery tomorrow.
Put in the work.
Avoid those who don’t believe and don’t support you. Cut out negativity.
Have a plan of action and paper printouts stuck on your wall. ( I’ll put mine together and post here soon).
As soon as possible, start drinking water throughout the day.
Add a bit of extra salt to your diet. I hated it, but did it as I had no issues or medications disallowing it and it was supposed to help with POTS.
Have a pulse oximeter attached to your finger at all times. (Much later when I improved, I got a smart watch) I also realised much later that I should take photographs/videos of the readings every few days or weekly. this shows progress, or lack of it. Most importantly in my case, I was so precarious initially that I changed my movements immediately depending on the reading. Again, I’ll write about this in detail later.
Believe…Believe…Believe…Do…Do…Do.
It might have been coincidence, or just another random virus . I ran the same low grade fever for several days, as I did last year when I contracted the condition my doctor called " Long Covid? "
Just like last year, I couldn’t shake the fever for several days. This was followed by a few days of banging headache, again similar to last year. Then after the fever and headache went, I got pulsatile tinnitus, which I'm pleased to report has disappeared after three days. Today I have pretty bad pain and a sore spot on top of my shoulder joint.
I've had a very busy couple of weeks, but I made myself have a lie down yesterday. Maybe that’s all I needed. I’m back to write about “Long Covid?”
Yes I realise I add the question mark after the name, but that’s what the doctor put on my paperwork. I don’t even have the dignity of a conclusive diagnosis or have a have a solid name for what afflicted me.
That’s the indignity of Long Covid. Only the sufferers know what it is, no one…and I mean no one else really gets it.
I woke up tired today. Not the levels of fatigue that came over me last year, but quite tired nevertheless.
I woke up to the beat of a banging headache, not as painful as the ones I had over the last year, but bad enough.
After some time my hearing went funny. Not like the last year, but still, strange. ( It's called pulsatile tinnitus I think). The hearing had a whoomp-whoomp wave like sound. It left me alone after a while and I spent the rest of the day trying to get work done.
I could not take paracetamol, as I forgot if I had taken any earlier. Still not as bad as forgetting everything last year, but it brought back some apprehension of a backslide.
Did I jinx my recovery by daring to speak of it? Suffer in silence is an age old control technique, by some people, and apparently Long Covid too.
Do your best Long Covid, I will most certainly do so too!
I am going to attempt to make a list. It is daunting and will mentally take me to a very dark and hopeless time. I may or may not even remember everything.This may or may not match other people’s experience. But it was mine. Each of these symptoms was like a bead on a string of bafflement. Not a pretty necklace, but a choker that was too tight and was tightened and loosened at will, to bring me to heel.
They did not come at me one at a time. They were all there, some taking centre stage in sub-groups, while others stood around waiting insidiously for their turn. They swapped and changed positions, but were all there, all day, everyday and night. I acknowledged and looked each one in the eye. I suffered each one’s assault, but also spent the time in its company, examining it, looking for clues on how to defeat it. Looking for a way out.
I remember the spot where I stood in my kitchen when I had to visualise an altered future long or short, with no end in sight. From that day in November 2021, to this day, I have come a long, long way.
It is a combination of Miracle + Luck + A lot of lonely, heroic hard work.
Im not going to be shy about this. If I hadn’t made myself a hero, I don’t believe I would be here. Many of the symptoms are gone, some I have made peace with and others I will gladly tolerate in exchange for the life I have now. No, I don’t believe I am as I was before. But I am good! I also have my time frame to heal:
My Whole Life !
As Me and I know, no one reads my blog, except us two - who write it, then read it. But if anyone walking in the same desperate shoes as mine happens to read this, I hope to convey the following:
This journey requires you to make yourself a hero.
It requires you to have a heart of steel that is prepared to say, I don’t know what is happening to me, I don’t know if there is a way out, but I will set myself a time scale for recovery, and make a promise to myself to keep trying and never give up till that time scale is exhausted. That time scale will be my whole life. I will back myself. I will discover that 99% of family and friends will not understand or accommodate me, I will also never forget who the unexpected other 1% are.
I will not compare myself to others walking this same journey, but I will listen to them. I will make a pact with my inner voice. I can hear it, I can understand it and now it will help fix me. I will make a plan…a battle plan, wall charts and all. I will take one step ( I mean that literally) at a time, and use paper and pen to record each step, its consequence and what my inner self feels about that step. I will go to sleep each night and wake up each day ready to fix myself. This is my new job.
At home, one evening in the first few days of this new, weird existence, as The Husband got the microwave meals ready, and gave me the evening dose of the Doxycycline, he looked really alarmed. Even he knew the limits I could be pushed to, and more importantly the limits I pushed myself to were beyond ordinary folks’ capabilities. Today, that limit was breached. I swallowed the tablet, and immediately forgot if I had taken it. So started the diarising of my medication, and anything else that had any relevance.
For the first time, and maybe the only time, I broke down and cried. Within seconds the gadget on my finger - The pulse Oximter, flashed ridiculous numbers showing a heart rate in forbidden numbers. So I gulped, wiped my face and took slow breaths as I sat down. This was insult to injury. Not only did I have “something” that had no explanation, no specific cause, no point of reference for the medical field, I couldn’t even have two min utes of shock and grief either as my heart would explode.
I would say, the single most difficult thing was not having a time-scale. Is this how I would be for life?
Many days later, when I found a private doctor who gave me 30 minutes time in exchange for £130, I remember asking him the following questions, and his answers:
How long will this thing last? Don’t know
What is it? Don’t know
Is there a treatment? Don’t know.
I got referrals for heart scans, blood tests and a few other tests. In hindsight, if I knew then, what I know now I might have had a few other tests and scans. I refused to consider all the medications that “may help” with the symptoms I was experiencing, because these weren’t small time medications. We were talking beta-blockers, and other serious medicines which could have side effects, which may not work and if no one knew what was wrong with me, I wasn’t going to take medicines blindly.
More non-wisdom arrived when I asked if I should rest it out, or fight it out. Don’t know. If I rested too long, the heart muscle would weaken and give way down the line. But if I started moving my heart was ripe and ready for a full on heart attack any second. I left the doctor clutching the papers for the various tests. On one corner was written, “Long Covid?” With a question mark.
The reason Covid-19 was called a novel illness, means that it was new. So no medical professional, anywhere in the world had any proven information or knowledge. What was probably being gathered was anecdotal patient experience. I was struck down at the wrong time and I felt absolutely alone.
Hello…hello…hello!
How are you? (I say to me)
I’m alive, and grateful. But I think the name they gave it, is too tame to address the full scale of what it really is. (I replied)
I have regained my memory. Over the last one year, from the end of October 2021 to the present, my memory went from zero, to partial, and now it’s almost fully restored. With everything else that I battled, the memory loss is ranked up there. Mainly because it robbed me of my sense of self, my dignity and left me vulnerable and exposed, in the hands of people who I barely trusted.
As I was doing some unrelated work today, another curtain lifted off my brain, and I had a surge of emotion, like the spine chilling feeling you might get if you just remembered that you forgot your baby in the park. Just to clarify, Ive never forgotten Tara or anyone else in the park. I had a blog, and I needed to see it now! It had disappeared from gGoogle and nothing came up on the search. So I asked Google how to find my blog. Within minutes I found it, and saw the reassuring, familiar space where I share my thoughts without any hesitation. My space. My friend who has been a better friend than people who have been inhabiting my world.
Where to start?
October 2021, when the evil Delta variant was coming to an end, the Government announced that all restrictions, mandates and distancing would stop immediately. What a terrible, terrible decision. As a family we had been very careful so far. We followed all the rules, took care to protect ourselves and equally important, to protect others. As soon as Tara’s school dropped the measures they had in place, within days Tara brought Covid home.
She suffered desperately for 10 days, her body weak from a bout of Bronchitis a few weeks before and possibly flu. It was a no brainer for me to do whatever I could to help Tara who had collapsed with the excruciating pain the covid virus inflicted on her joints. This was in addition to all the text book symptoms of the prevailing variant- the dreaded Delta, which had devoured many of my extended family members in large numbers. As I looked after her, I didn’t suffer any of the symptoms, except a very low grade fever that rumbled on for a few weeks. Tara had repeatedly returned positive tests, but The Husband and I never showed a positive test.
The day before school opened after the half-term break, I was feeling terrible, in an ominous sort of way. We all went to the testing centre and tested again one day before school started after the half term break, and all tests were negative.
Later that night I had a strange feeling of foreboding so I called out to The Husband . Tara rushed in too. I tried to tell The Husband that I was sinking and something was seriously wrong. He was pre-occupied and said I was probably tired and would be fine. I insisted that something was different and did not feel right. He lost his patience and literally barked at me, “What do you want me to do? What do you want? Should I call an ambulance?” Tara looked up angrily at her father and muttered. I felt muddled in my head and backed off, saying there was no need to do anything, and I would just go to sleep.
The next morning Tara who had made a full recovery returned to school, The Husband was back at work. After I dropped Tara off, and came back home, a strange sensation took over and I collapsed. Just like that. I changed into my night clothes and thought that I needed to rest after a particularly difficult few weeks. I regained my composure and tried to call The Husband who couldn’t be reached. I hesitantly called the emergency line. My voice sounded alien, I couldn’t breathe and I was feeling light headed as my heart felt it would race out of my body. The person on the line, said that I should get to the Hospital Emergency department immediately. I asked for an ambulance, but the waiting time was around 25 hours or so. Even after that there was no room at the hospital. That day a few people died outside the emergency department, on the floor. I stayed calm, and tried to ring my doctor.
The doctor’s surgery was closed for any walk-ins. After several attempts, miraculously someone answered the phone. I could barely speak as I gasped for air, and barely made any sense as I asked to see someone for help. After a lot of discussion a doctor agreed to see me later that day, but only if I had a negative covid test. Again, miraculously I happened to have a negative test from the day before. I clutched it in my hand, and stumbled out of the front door and into my car.
I was going to die. But I was not going without a fight. I drove in a zen like state, it was late morning, there was absolutely no traffic on the roads, no one -at least that’s how I remember it. I also remember driving through green lights without stopping. I made it to the doctor’s surgery gates which were closed and chains wound around the bars. There were all kinds of warning signs, with seemingly miles of yellow warning tapes festooning the whole place. It looked spooky as there was no one in sight. It was raining and every door was closed. I left my car on the path, stumbled out, and with one final effort pushed the gates which opened with a big enough gap for me to go through. I approached a marked zone. I can’t remember if it was called the yellow zone or a hot zone. Something like that. In the rain I crumpled into a heap. A young doctor in full protective gear just about made it to catch me as I went down. I don’t remember much after that, except that he checked me for my heart rate, breathing and other vital signs and I heard him say that I needed to be in the Hospital. I was tired and explained that there was no room for me there.
He appeared very concerned and said that I needed to get there as soon as I could. He was kind, looked a bit nervous but seemed extremely competent as he rummaged around his brain and the computer to find me any medication that could help. This was before the present time when various medicines like Paxlovid, and other anti-virals that are now available, weren’t there. He settled for Doxycycline which he said was not ideal but it did sometimes offer anti viral benefits. For all intents and purposes it looked as if Covid had invaded me recently and had started a series of events in my body that were called Long Covid.
He said my lungs didn’t sound good, and my oxygen levels were dipping. My heart meanwhile was doing its own thing, wildly beating at around 269 beats per minute at one point. He said again I should go to hospital and if the oxygen dipped again to call an ambulance. I had stabilised a bit, thanked him and drove back home. I went to bed and fell asleep.
I still had to do the school pick up, so I of course set the alarm for pick up time. I’ll be honest, I don’t remember if i did the school run that day, because the biggest bomb was about to fall. I lost my memory.
Don’t call it Long Covid. That’s too tame a name for this beast I had to ride for the next one year.
