Is it over?

Across cultures there is the recurring mention of the 7 year bad luck, or challenging period that everyone comes across in their lives.

Some believe it is pure bad luck, while others believe it is a 7 year window of opportunity to face these difficult times and emerge a better person-like gold that emerges purer after a trial by fire.

As I approach the end of my own 7 years of physical torment. Some issues have fully resolved, others are down to almost unnoticeable levels.

I am grateful, and I am still in some kind of a haze of disbelief and heightened alert. I am at last free of severe pain, but dare not say it or think about it, in case it is not real and returns.

Someone make it stop !!!!

 I am in severe pain while eating from my left side. I can’t eat, sleep or speak properly now.

The dentist checked me and said my teeth were in good condition, but I need to go for a CBCT scan and see an Oral Surgeon ! My wisdom tooth, or other teeth might be pressing down on a major nerve.

The earliest I can see someone is in 2 weeks. Heaven help me.

What is going on??? 

Frozen shoulder-Part 3

 I got a GH joint fluoro-guided cortisone injection in my shoulder. It was so painful that I was sobbing in the operation theatre and for a good hour afterwards when the nurse was pulling at my arm to get me into my clothes. I am a crier when I see kindness, love, happy weddings and when I’m relieved a bad thing is over. But I am not a crier during injury or medical procedures. So when I say it was painful. It was.

Would I do it again? Hell yes! One month on, my frozen shoulder is pain free when not pushing out of the frozen boundaries. Yes, I have limited range of motion, but it’s not in the incessant agony it was in before the injection.

I’ve had frozen shoulder before. 5 years ago on my left shoulder. This time it’s on my right side and I’m doing it differently.

What I did in 2018:

Went in for physio first..lots of it. My frozen shoulder started with a minor pain, escalated to severe pain, went into the freezing stage but still had pain, three years later the freezing subsided but the niggling pain went on. In 2021, I went for the GH joint fluoro-guided injection from the back of the shoulder. Within a month I was fine. Somewhere towards 2020, the minor niggle on my right shoulder had begun, maybe some freezing had set in and it resolved to acceptable levels over time.

Then in early 2023 I remember throwing a towel over my head, up to The Husband at the top of the steps. I remember a short, scary twinge and it all started. Around May - June 2023 the pain was noticeable and annoying. I remember being on a plane in August 2023 and struggling to use my right arm with the over head locker. The agony started around September 2023 and was full blown in October 2023. I finally fainted with the pain on two occasions, falling on furniture and injuring myself with bruises. I remembered the futility of the early physio the previous time, so went in for the injection in December 2023. 

It was the best decision I made, at least in terms of my sanity and the freedom from the pain. I am doing only one or two very simple exercises whenever I remember : finger walking up the wall and pendulum stretch. My arm is still frozen but the range has improved. Anytime I do a bit beyond my capacity it starts with the ominous ache again, but icing and paracetamol along with complete rest sorts it out in a day or so. 

I am not able to do everything I used to. At peak pain level in October 2023 I was also struck down by a viral infection. Lying down in a crumpled pile with pain and illness I realised that neither The Husband nor Tara checked on me, came to sit by me to talk or dare I say made a little bit of bit of fuss over me. Isn’t that what a loving family is supposed to do? I was alone and didn’t even get offered one cup of tea. In that condition, something broke inside me. I still can’t put a finger on it, but I think something was gone. Of course when I mentioned this to my sister, she instantly said, I should have asked if I wanted anything. I regret saying anything to her.

Whenever Tara was unwell, be it a pesky bug, a scraped knee, a stomach pain I was making meal plans, sitting by her, giving her a hug and lots of kisses, googling all night to find something to ease her discomfort. When it was something more serious, I battled the entire hospital, the Husband and the GPs to not dismiss Tara and to treat her. It turned out she had sepsis setting in on one occasion and a blocked bowel on another. I remember literally carrying her on my frozen shoulder to seek help at the Emergency department and refusing to back off till someone helped her. I have apology letters from the hospital to prove I didn’t over react. I understand that any Mum…any loving parent would have done what I did, she didn’t have to ask.

Then when I was sinking after covid with a heart rate in the 200s,  disoriented and gasping, why was The Husband barking at my face? When I was doing all the housework and cooking and driving with my frozen shoulder how come no one offered to help? Did I need to ask? Can no one see me? 

Now Tara doesn’t even talk to me other than asking for dinner or telling me the time to drop her off at school. Her communication to me is now via The Husband. What happened? Deer in the headlights is how I feel. I did ask her directly, has anything happened? She just stared blankly, not a word from her lips. The last 16 years Tara was my job, my first thought in the morning, my last thought at night. I am genuinely without a job or purpose, and it happened suddenly. It wasn’t the organic drift of a teenage child. It was sudden. No explanation. 

The only coherent thing I got from The Husband when I made a millionth attempt to talk to him about Tara was - Don’t blame me. I didn’t prevent anything but I didn’t do anything . That was enough for me. It was true. He had never done anything. Literally nothing, and he didn’t prevent anything either. When in 2018 after a heated discussion he told me to back off and that he would manage Tara. Since then his idea of management was to do absolutely nothing. Tara’s bedtime fell away, she’s still up after midnight. Her eating habits are out of control it’s either McDonald’s or shop bought microwave meals. He won’t cook. She’s unfailingly late for everything, time has no value, her mobile phone is in her room all night etc.  Zero structure, but The Husband is now the popular parent.  

Whatever this abandonment from Tara is, whatever this shift in my heart and mind is, I hope that I am led to my purpose. They say that when your heart and mind don’t agree, you should just wait. When they align, the answers will come.

I’m waiting.

Birthday in a hotel room.

What have I gone and done?

I've just booked 2 nights in a hotel down the road from my house, for my birthday. 

By myself. 

I just need to find the courage to actually do it.

I’m terrified .

But the moment I pressed “Book now”,  a lot of the grief I'd felt over the last few days seeped away. 

I feel I need to make a list…

What’s happening?

I might cancel tomorrow’s appointment

I have a booked appointment tomorrow at a private hospital for my shoulder. I was told in advance that I can’t drive or lift any weights after this for a couple of days. It wasn’t a surprise appointment. The Husband knew about it and so did Tara. Yet just yesterday it seemed that my treatment got in the way of Tara’s life.

She mumbled yesterday, “If you WON'T take me to school what should I do? I’ll just walk.” This from a 16 year old girl who has firmly resisted doing anything around the house and who hasn’t even gone down to the local shops to buy a toothpick! Not for lack of effort on my part. I was determined that during the summer holidays I would like her to learn how to take the bus, go to the local shops and maybe start by tidying her room. Given the events of 2018,  I told The Husband to get it sorted . Nothing happened. 

So I told her that her father would sort it out as I would be resting after my shoulder procedure. She said she’d spoken to him and he said he couldn’t take her as he starts early. It’s as if I had the spotlight for a day, even if was in unpleasant circumstances, and these two can’t handle it.

I can’t deal with the drama so I will just cancel my appointment. The agony of my shoulder at least reminds me that I'm human. Otherwise the constant dehumanisation that Ive experienced in my life with people who are supposed to love me should have pushed me over the edge already. Yet here I am, typing away in my blog that no one sees. Why do I do it? I don’t know. Maybe I'm placing on record a first hand account of my life, that is not edited or controlled by others agenda or narrative. Maybe I need a place to disgorge my reality when what is presented outside to others has been hijacked by people cleverer than me who have solidly entrenched a completely false version of my life with such expertise, that even if I open my mouth to say something, I am shut down as a "neurotic, psychotic fantasist” (my sister’s words when I made a feeble attempt at reaching out to her) even before the words leave my lips.

I am played very well by very clever people. I am that person who gets regularly shot by others, with the bullet lodged firmly in my heart, yet somehow am always found with the gun in my hands and no clue how it got there as I bleed away. Duh !

2023

 2023 has been one of the worst years of recent times.

It started with the exhaustion of a full blown covid recovery. This time it was the full 10 days of text book symptoms and thankfully no repeat of the long covid. 

In January came the news of my father’s blocked arteries and the next few months of terror as he went from one course of treatment to the next. My sister was with him from January shuttling between his treatments and her own home where her son was facing his A level exams, and her in-laws were facing their own failing health with the help of my brother in law.

Several scans and a failed attempt at inserting stents in my father’s heart , was followed by a new crisis of severe internal bleeding . It all culminated in open heart bypass surgery in April or May. My sister returned in June to deal with the chaos at her in-laws place. I promised to go to my father to help him get back on his feet as soon as Tara's GCSEs were done.

As my sister was helping her husband look after his parents, they had a series of bombshells in the way of her father in law having a heart operation, followed by a deadly diagnosis of mouth cancer. This was followed by dismal A level results for my nephew and the ultimate shock of a breast cancer diagnosis for my sister. She had a mastectomy a few weeks ago and we are hopeful that she got rid of the cancer. 

It continued with a month long viral illness for The Husband, Tara and I, and my new frozen right shoulder. We remain estranged but functional and I still feel unloved and alone. I made another plea to Tara to communicate with me and attempt to fix things but she’s not interested. I spoke to The Husband that he was wrong in allowing this to go on, but he walked away. They are a team. There are no meals eaten together, no bedtime, no control of mobile phone usage. More importantly, there is no conversation, no hugs, no shared plans of dreams. Just an awkward , quiet co-existence and the deafening shattering of my breaking heart that no one can hear.

I am fundamentally a tutor, driver, cook, cleaner, and do-er of all jobs who is also fundamentally unloveable. Years ago I was forced out of my parents home after resisting attempts of an arranged marriage since my late teens. Mind you, we were not raised to be self sufficient or independent. Quite the opposite. We were raised with clipped wings, with no teaching of life skills or how to deal with the outside world. Never allowed to go out or meet people unless it was with the family, nor allowed on public transport. I still get bewildered and panic using public transport. For the first few years, our very large family home was all I saw. Within those walls there was physical and mental abuse, and somehow the thought process that if I raised my voice it would be bad for my parents. I grew up with a very firm belief that I had to protect my parents, never the other way round. I don’t remember ever asking for anything. 

As I got older, I rebelled and got educated, was a national level sportsperson and started a promising corporate career. All the while tip-tying around really scary people,  operating within an atmosphere of terror and working with the invariable psychological damage over my formative years that presented itself with a multitude of fears and phobias. I was also oddly a very affectionate and eager to please child. 

I had (and still have) tremendous anxiety going outside alone, socialising, taking public transport alone, meeting people, trying to relax outside the home and a few more. But you would never know it! My own idea of therapy was to tuck all these under my belt and embark on the most people centric career there was. I was the top communicator, presenter and people’s person throughout my college and work life. No one knew the underlying terror and pain I experienced then, and still experience while being absolutely brilliant at what I did. (I have certificates and prizes to prove it!)

The one curious thing however was that I was totally relaxed and happy when I worked with other people-whether with one person or a group. It was as if just having one other person with me brought out the best in me, but took away the fear.

But it counted for nothing. Now labelled the disobedient one who caused nothing but sadness and stress to the family, I was constantly pressured to get married to a stranger, The Husband appeared gallantly and took me off their hands. He was my close friend and when I was with him, I felt safe and happy, and spoke to him about all my fears, my weaknesses and my life in general. We enjoyed meeting friends and just hanging out after I finished work. It changed overnight when we got married. He left me alone to get on with everything, from the littlest to the biggest aspects of life, I was alone and back to my constant fear. I never understood it and he never explained.

I think all predators can smell an injured animal. From the frying pan into the fire I went. Years later, I thought devoting myself to Tara and making sure she was happy, educated and free would be my purpose, but after the events of 2018 I understood that no matter what I do, if my Tara could reject me, I must be fundamentally unloveable. 

Once she’s on her feet and off to university, I will attempt to rebuild my life, go back to work, whether voluntary or paid. I want to immerse myself in service, while full aware that I am unloveable and will never expect it from anyone. 

Strange then for someone as unloveable as I to the humans I try to please,  all the neighbourhood dogs strain at their leads as they trip their owners over to cuddle up to me with pure love in their smiling eyes. 

Frozen Shoulder - again ?!

It started a few months ago…possibly May or June 2023, when I threw a towel at my husband. Overhead. As the towel flew, I felt a twinge in my right shoulder. It was familiar…ominous. Either I was panicking from the memory of my previous frozen left shoulder experience, or I had the eerie recognition of the condition I battled for several years since 2018 to around 2022. At the time I was told that there was a good chance that if you got one frozen shoulder, you would likely get it in the other shoulder at some point.  I can remember fuzzily getting it on my right shoulder just as my left shoulder was easing. So how could this happen?

Long covid had done the impossible - taken away some of my most traumatic memories at the time. If it wasn’t for my blog, I wouldn’t have remembered half of it. 

As time went on the pain gradually increased and changed. The spring of pain originated at the top of the shoulder and flowed like rivulets of intense pain sometimes down the forearm, other times burning through my bicep or shooting into my thumb. Then the freezing started. I knew I had to do something right away. 

But first, I had to get a trip behind me. My father had recovered from his complicated heart bypass surgery and was now debilitated psychologically, living in fear and unable to move. I spent a few weeks with him, and accomplished my mission of getting him walking, driving and going to see his friends everyday at the local Club.

Once back I contacted my doctor to help me get the same hospital treatment I had the last time for my left shoulder-an ultrasound guided fluoroscopic shoulder injection. Amazingly, they turned me down and suggested I visit them at the doctor’s office where they would put another injection, not guided by any X-ray or ultrasound, into my shoulder. With my first frozen shoulder when I had a very kind and competent lady as my GP. She went though great lengths to help me, explained why it was important to have this injection in an operation theatre guided by equipment and fluoroscopy. This meant some delay, but after 3 years of suffering behind me, I was prepared to wait another month. That injection fixed my left shoulder. I don’t know if it was because I had already done the 3 year time that the condition demands, or whether the injection intervened and healed me.

Fast forward to this September, I had another GP who was not helpful at all. I was confused. It had been around 5-6 months since the right shoulder issue started. So I was at the start of the condition this time, unlike the previous time when it took 3 years to get some treatment. No help forthcoming, I grew increasingly desperate as the pain soared and the pile of pillows came back in my bed along with traumatic nights. I self-referred to physiotherapy at the hospital. I had 2 meetings with a physio who caused me so much pain during the examination manipulation that I screamed and cried through it. After the second session he referred me to a Consultant who agreed that the guided injection was the way forward. I was relieved one minute, then devastated the next when I found out that the hospital waiting list could extend to 6 months or more. I had to wait.

A few weeks into October, I woke up screaming one Saturday morning. As I stumbled to the bathroom attempting to calm my shoulder, I felt a wave of nausea and cold sweat. The sheer brutality of the pain caused me to faint. I crashed face down on some furniture and came to with cuts on my body and screaming hysterically and incoherently. This was according to The Husband and Tara who happened to be home that Saturday morning.

The decision was made. We would have to seek private treatment for the injection because I was desperate, and for the first time in decades, I admitted to it. I go in this Monday. Im not sure if it will work like before, but even if it gives me pain relief while the condition runs its course, I’ll take it. I am after all desperate.

Are my expectations low, and tolerance high?

I’m stronger, and better and optimistic. Recovery from round two of Covid feels infinitely better than the nightmare of the past year with Long covid. 

Yes, over the past two months I’ve had (and still have) some issues. Extreme weakness and pain in my legs and shoulder joints being the standout one. Still, it is NOTHING like last year. My heart is behaving well, my stomach pains have gone, my memory is reasonable, and my sense of taste for the most part is altered, but not gone.

I’ll take it !!!!

Round 2

A new covid wave…a new variant. All I wish, as I find my bearings, is that we have had the new variant, and not one of the older ones lurking about. After fighting and surviving covid the last few weeks, the thought that a new variant is waiting in the wings is exhausting and I really am not ready for it.

Yesterday, Tara returned to school, and The Husband is back at work. I can’t decide if it was a good thing or a bad thing that covid came and left along with the Christmas holidays. Maybe it was a good thing. The additional pressure and panic of missing work and school doesn’t allow for effective healing. Still-two consecutive Decembers are missing from my life. 

I was pleased as punch when I put up my beautiful Christmas tree at the very end of November. I wanted to enjoy it all this year. Then Covid arrived on the 2nd and only just left. I like to follow the tradition of taking down Christmas decorations before the 12th night. So with sadness I enjoyed 5 minutes of illumination this morning, and took everything down, neatly sorted and boxed for next year. That’s 2 years worth of making up to do next year.

Christmas got cancelled

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.

Everyone finds their herd. Eventually.

 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.

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.

That name is too tame

 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.

Carpe Diem. Or is it ‘strike while the iron is hot?'

Only just recovering from Tara's shock hospitalisation, I barely had a few days to regain my composure. Tara was on a very strictly monitored diet and had to have routine scans to make sure she suffered no internal damage. It was tense times, but I was Tara’s Warrior Mum all over again. Tara was also incredibly obedient and probably scared to death by her experience. Suddenly I had to be cooking a lot more and be more creative as well, to be able to produce the diet required by Tara's doctor. With two poorly functioning painful shoulders.

I saw a doctor in November 2019 to seek relief for my shoulder pain. He said I was depressed and needed anti depressants which he would be happy to prescribe. I was crying in his office because I was in acute long term pain, and I mistakenly thought I had a safe space to share my pain. As soon as tears rolled down my face, he labelled me depressed.  I left his office in disgust, but not before telling the receptionist what I thought. 

December 2019 went downhill as I was very unwell with a strange illness. But as the year was plummeting, something inside me was saying, It’s time, Seize the day! When I called the doctor’s office for an appointment in December, the receptionist booked me in to see this new lady doctor who took genuine interest in my suffering and went about systematically ordering blood tests and scans. She helped me, as I recovered from whatever nasty bug I had, and then went on to discuss my frozen shoulder with me on a very human level. 

Both my shoulders were not as bad as before, but the left side had flared up again. The doctor felt that a cortisone injection was the best way forward. I agreed immediately and in early 2020 went to the hospital and got one injection on my left bicep. I was a bit confused about the location of the shot as the main area of pain was the top of the shoulder. Still, they could stick me with injections anywhere and I would be grateful. The pain of the dreaded cortisone shot was nothing. 

The doctor administering the cortisone had a very hysterical and anxious trainee with her, who I suspect made the doctor a bit uncomfortable too. I on the other hand, was so battered by my life in general, that a hysterical side kick was mildly entertaining and did nothing to upset my mental balance. I lay there calmly while the doctor explained she would inject only one area today. The trainee was writhing in what seemed to be extreme anxiety,

The second injection was to be scheduled if I responded well to the first. As luck might have it, I responded very well to the first injection, and was almost eagerly looking forward to my second one which was more complicated as it had to be injected into the shoulder cavity via ultrasound guidance in an operation theatre. But Luck wasn’t done yet. The pandemic and lockdown started in March 2020. The cortisone shot would have to wait for another whole year.

I made gains that year. With some loss of pain, came great clarity of thought.  Covid19 came, and with it came opportunity. Carpe Diem had a new friend called Strike-while-the- iron- is-hot. I did. 

All workplaces and Schools were on lockdown. The Home was my domain. Over the next few months, The Husband and Tara were officially residents in my domain 24X7. Which way would this go? I was a wounded lioness with a renewed sense of power and self, zero hopes and expectations from anyone, and one cortisone shot. Let the games begin.