Thought

 When an unyielding sense of responsibility meets a grandiose sense of entitlement, is abuse inevitable?

Time to face it. Time to make a list. In no particular order. Just write it down.

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.

Back on top

 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. 

Did I jinx 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! 

Time Frame

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 !

What now

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.

Shall we call it Long Covid then?

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.