I haven’t written an update on this blog for some time, I have weeks 7 and 8 in draft and its about half completed. I’ve been concentrating so much on getting well and haven’t been able to look back. I will carry on with the blog, but not quite yet, its hard looking back.
So a quick update, Adam returned to work last week and everything is going well so far.
Tupac cat, is still on attack mode, but she has managed to capture 2 spider intruders this week, hooray.
I opened a twitter account (covidemeandadam.com), so I put a daily update on there and I found other people who have been experiencing long term symptoms. It’s good point of reference for sharing important medical updates and academic papers.
Below is something I’ve written today, it will give you an idea what I’ve been up to the past few weeks.
Became ill 31st March
Positive covid-19 test result 4th April
Negative covid-19 test result 16th May
Positive covid-19 anti-body test 27th June
Tomorrow marks 158 days since I became unwell, it also marks the day I return to work, a day that I didn’t think I would see or experience (although I have been on annual leave for the last two weeks).
It has been a long rough rocky road to travel, with cul-de-sac’s, dead ends and no road signs, although I have travelled with some brilliant and inspiring companions, who have been with me every step of the way through phone calls, video calls, messages, presents and socially distant visits.
For 5 months covid-19 was an unwelcome guest in my life, it has provided me with a dry cough, low temperature, cold sweats, excruciating lower back pain, no sense of taste and smell, no appetite, muscle and joint pain, headaches, breathlessness, high blood sugars, high heart rate, low blood pressure, low peak flow, oxygen saturations that have gone up and down 90% – 100% range, dizzy spells, feeling faint, nausea, diarrhea, palpitations in the chest, hair loss (I didn’t shave my legs for weeks, it made me dizzy bending over), phantom smells (cigarette smoke) memory gaps and loss, past injuries causing pain, low energy, being emotional for no reason and the best one fatigue.
I know, I used to roll my eyes at fatigue too, but it was debilitating it’s not just being tired, it’s like a heavy feeling pushing you down, it makes you weak and unable to power your arms and legs, everything you do is an almighty effort and takes extra time just to complete a simple task, like having a shower or getting dressed, you feel powerless, weak and breathless.
These symptoms are what I experienced, there are many others who experienced and are experiencing more debilitating symptoms, with no answers to why they are still unwell. Like me these people haven’t physically been able to see a healthcare professional, we stayed at home, we could only go to A & E if we had breathing problems i.e. turning blue in colour. Our GP’s received no guidance on how to manage or treat us, we were on the same page of the covid-19 recovery book as our GP’s and that page was blank.
I wasn’t able to push a vacuum around the home, in fact the carpets in my home never saw a vacuum for 8 weeks, it didn’t matter no-one could visit our fluffy cat furred home, we were still in lockdown, Adam was the first person to vacuum and he had been in ITU, the day I vacuumed you would of thought I had won a prize, I still had to have a nanny nap afterwards. I couldn’t stand in the kitchen and make food with out feeling faint, I didn’t want to eat anyway and without a sense of smell, you worry about freshness of food or have you set fire to the place. I had to go up the stairs on my hands and knees, as standing up walking the stairs made you dizzy and breathless. I asked my friend to come round and amputate my arms once, as the pain in my arms was too much to bear, I thought the amputation would take my pain away, they declined this kitchen table drama. I couldn’t keep up with conversations, it would all blur in to one noisy sound, watching TV was like taking a maths exam, reading a book was painful. I successfully fell asleep at a family BBQ, I was just drinking water, I woke up with a massive umbrella over me. I almost passed out in the bakery section of Morrison’s. I’ve lost so much hair from my head, my pillow looked like an ewok had been sleeping on it. I have consumed my body weight in paracetamol in 5 months, I know my liver works just fine. I don’t know how many times, I have nearly fallen over and I don’t know how I never got a pressure sore from sleeping so much.
I wasn’t living, I was existing day to day, sometimes I was existing just in the morning, some days I felt better, which was great and then I would slip down the covid-19 recovery ladder to the bottom again, this is a constant cycle of feeling better, then getting unwell again, there was no end for me.
I don’t know how Adam put up with me being like this, he was going through his own struggles as well. But he was there by my side making sure I ate, making sure I took tablets, making sure I rested, making me laugh every day.
8 weeks ago I spoke to a counsellor over the telephone, I have never had a counsellor before so I didn’t know what to expect, I spent the first phone call, which was about an hour, most of it crying, I don’t know why I was crying. The second phone call I spent it laughing, what had changed? I did breathing exercises, read a couple of mindfulness books, did the exercises, I did what my counsellor told me to do, accept the way I was now. It was hard to accept that I was limited to what I could actually physically do, without returning to bed to have a nanny nap. In my head I made a plan, my end goal was getting back in to work, I just didn’t know how I was going to physically do it, so I had an end but no beginning or middle.
The last time I spoke to my GP 4 weeks ago, I said that I couldn’t carry on feeling better then getting sick again, something has to stop. I said I needed substance and structure to my day and surprisingly I said I wanted to go back to work. I’ve dumbfounded my GP she wasn’t expecting this from me, she told me about pacing myself, but I told her about the ‘Spoon Theory’, I know what I am doing, I don’t do being ill and sick. She agreed for me to go back to work, but as phased return, I was already in discussion about phased return with my boss many weeks ago, as I was always trying to go back to work.
Slowly I have been able to build up my strength, with walking, hijacking Adams physiotherapist for exercises I could do. I was limited to 20 minutes, exercise for 1 minute, rest for 1 minute and stop if you get breathless. These were light exercises with light weights and resistance bands, I didn’t like going up and down the steps for 1 minute, but I did it. I did these home physio sessions every other day and walked on the other days, when I built myself up, I could do the physio sessions every day, there were some days I felt so tired I couldn’t physically do the physio, but I would tell myself tomorrow is another day and I would start again the next day.
No-one mentioned anything about the pain you would experience with covid-19 and the recovery, Adam and I broke pain in to 2 categories, good pain and bad pain.
Good pain, where you know you have exercised, and you can feel the muscles have been stretched. Bad pain, horrible cold tight aches, with heaviness, no exercise.
This week I have been able to complete some bike rides, which has been amazing, I have had some breathlessness and good muscle aches, but I have been able to do it, with Adams encouragement and my bloody stubbornness, it has taken me about 5 weeks to reach this level.
I feel so liberated about going back to work tomorrow, even if it just a few hours, tomorrow isn’t just another day, it’s the day I go back to work.