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.

Am I imagining this?

It was November 2018 when life as I knew ended. The last one year saw me become the living dead. I approached The Husband one last time and said, if he wants to talk, with or without a counseller, if he wants to make a start at some resolution to our situation, if he was willing to come clean and deal with whatever it was this is. If he loved Tara and much as I did, now was the time to sort things out.

He put on his headphones and walked away. That was last year. I waited for either or both of them to come to me that whole, never-ending year

I have cried every night of the last one year. I have infected sinuses to show for it. When neither The Husband nor Tara came to me, I made up my mind. I will survive this. I will give myself one year to grieve over what I lost, I will pick myself up, learn something new and unlikely as it felt, I will be happy again-with or without anyone. Loving Tara is a biological fact. I will not expect it back, but I will be there for her till she stands on her own feet and leaves home. After that I will travel my own road. Enough.

I made it clear to The Husband that if this is how he wanted it, so be it. From now on, I will take care of Tara’s every need, and do all the work I did for the house but that was about it. I would do nothing else. No more holidays, no more going out and after one particularly humiliating day when he threw out food before I had eaten, I made a vow not to eat or use anything he bought again. Made no difference to them, they were okay with it. If he went out he would have to take Tara. Im not available for all these things I had previously acommodated.

November 2019 arrived, and it did so in a hugely dramatic fashion. Tara and The Husband were carrying on with their respective lives, while I waited for November 2019 as a date of closure and new beginnings. November 8th Tara was rushed to A&E, and what followed is a nightmare of epic proportions..the tail end of which is still ongoing, though mercifully the worst is behind us.

Every resolution of moving on, carrying on, new beginnings evaporated in one second while I was Tara’s warrior Mummy all over again. Nothing mattered as she shivered and convulsed in pain, shunning her father and clinging to me while I half-carried, half-dragged her into the hospital, trying to ignore the agonising pain in my shoulders being weighed down by Tara. Nothing was relevant as I held her hand in the Acute Assessment Unit. I looked in her eyes and said, don’t worry..Mummy’s got you. It will be fine. A few days later when I brought her home and tucked her in bed, I broke down in tears at the foot of my bed. I reached out to The Husband, I looked deep into his eyes and said, I can’t bear this anymore. You’ve got to step up. You’ve got to do something. He just stood there, looked at me and walked away.

I am a proud person. I had backed off just as Tara and The Husband had wanted all of last year. November 2019 was supposed to be a milestone in my recovery. I had never backed down to anyone in the face of injustice or when it came to my dignity. In a second I surrendered it all for Tara - pride, self respect, ego-everything. I looked after her 24 hours a day for the last month or so. I hugged and cuddled her every night. Like I didn’t have time. Like I wouldn’t have tomorrow. It didnt matter whether she approached me, apologised or not, I was her Warrior Mummy. My job is to love and protect her no matter what. The Husband uses Tara like a shield that he knows I will never attack. I got that.

In the last one year after separating me from my Tara, I expected that he would love her and look after her just like I did…and hoped he could be better at it than I. I was wrong. He spiralled into an vortex of selfishness and I watched utterly devastated as Tara was neglected. They both chose to live like that, rather than approach me to work out a way forward. I must have been a nasty piece of work, but I still couldn’t see how…or why.

Fast forward to today. After sorting Tara out, finishing dinner, I sat down to watch the news with a cup of coffee. The Husband knocks on the door. The first time in the last year. He says-The new Star Wars movie is out and I really want to see it. Can I go? I blinked a few times and recovered quickly enough to say he didn't need my permission, he and Tara could go wherever they wanted. He mumbled that Tara wouldn't want to see this movie. I was stunned. After one year what made him approach me was not a desire to resolve this seriously dysfunctional life, but a movie he wanted to see so badly, and he wanted me to look after her.

Did I just imagine this? I got up and quietly walked out of the room and started typing this. I will come back tomorrow and check if it was real or one of those absurd dreams.