I have wanted to write this and I have resisted writing about it. Mainly as the emotions are still so raw and I find it stressful to talk about and acknowledge what has happened over the past few weeks, but I need to share this with others.
It’s been the most distressing and emotionally and physically draining episode of my life.
But I am so very grateful for each minute and hour now.
I do know that by accepting what has happened and facing it, it will hopefully allow me to move onwards with my own recovery, rather than perhaps feeling that I could be pulled back into the full horror of this past experience at any time.
I naively thought the British government were well briefed on what was happening with this virus (COVID-19), that their decisions were based on some of the best data available – and this was the basis on which they would potentially take chances and play a dangerous game of roulette not only with people’s lives, but with their mental health and wellbeing, and their future family security.
Not to mention the effects on the future economy of the UK.
So what happened to me?
This is my own story, please be aware that some people reading this may find the content disturbing and upsetting.
On March 23rd 2020, I felt unwell. As a woman in peri-menopause, I am used to feeling tired, but this was on another level. I had a very slight cough that came and went and seemingly no temperature to speak of. It was showing about 0.7 above what’s ‘normal’ for me temperature wise, so I wasn’t overly concerned or unduly alarmed.
I am fairly fit and healthy and don’t have any underlying conditions, apart from minor gastritis which is managed through dietary planning. I am overweight (which has been a lifelong battle), but generally only suffer like everyone from the normal seasonal coughs and colds.
In the next couple of days, I couldn’t believe or foretell what would unfold.
It started with a vice-like headache that normal over the counter medication couldn’t touch. I started to feel extremely anxious to the point of delirium. It felt like my brain was being taken over by something that I couldn’t really explain or comprehend.
By Day 3 of what I thought was ‘the virus’: I was slipping in and out of consciousness at night and my body was experiencing ‘internal surges’, where my whole upper body, arms and legs, and chest, lungs and heart were enveloped by an inferno of pain and heat; it felt like ‘butterfly wings’ wrapped the whole of my body surges of heat that made it feel as though all my internal organs and bloodstream had been set alight.
I took my temperature again and it was showing as close to normal (with the inner ear thermometer). This didn’t make any sense to me, as all my skin was hot to the touch and I was in horrendous pain internally, both physically and neurologically.
My sight was blurring and the headache was constant. I lost all sense of taste and smell and time. I had been transported to a totally altered reality, perhaps this was similar to being on LSD? I also had extreme abdominal and kidney pain and green diarrhoea.
I was racing between the toilet and the bath to undertake tepid baths to bring down the internal temperature. I don’t know how I made the stairs or managed to stay alive.
This is how serious this was.
I was in bed at night when I passed out and when I woke up I felt I had been kicked in the chest. I became more anxious and was hallucinating and delirious, while trying to cope at home alone as best I could. I was sweating so much I had to change pyjamas every two hours and I was placing cool wet towels around my head that, when removed, felt like they had been warming on a radiator on full blast.
At times I was begging God to let me live, before passing out again, often for a number of hours. I focused on one hour to the next to ensure that I was drinking enough; and prepared compresses to bring down my body temperature. At one point I was lying on the bathroom floor tiles to cool my body down.
I didn’t sleep for 16 nights in total; and don’t have any idea of that time now, looking back. I think that my brain switched into survival mode and has since had trouble switching back.
Forget Bear Grylls this was fighting for absolute survival.
On day 7, I called 999 and the emergency paramedics attended via ambulance in masks and did an ECG (which showed all clear) to measure my heart activity; an oxygen finger test (which showed clear); and listened to my breathing. They said it was at an acceptable level and they didn’t want to admit me to hospital if I could cope at home.
They had no way of testing for COVID-19 and due to my lack of temperature, they would not admit me to hospital. I was disorientated and confused, and agreed to be left at home to try and continue to look after myself, as the alternative seemed at that time to be worse than what they were describing to me.
During this time (I have no recollection of how!), I wrote long letters to loved ones, pouring out all my love and emotion onto paper, as I was still unsure as to whether I would pull through, and the anxiety forced upon my brain by the virus told me that I was never going to get well.
This is the most dangerous element of this illness: it takes each person to their very own version of personal hell, mentally as well as physically.
I had been drinking nearly 2–5 pints of water an hour as I was constantly thirsty and exhausted; but I could not feel rested and still wasn’t sleeping. I had no idea what time or day, or month it was anymore.
By Day 20, I decided I needed some further help and spoke to the ‘on call’ GP, who said that I may have a kidney infection and UTI, so one of my neighbours collected the antibiotics to clear up any potential secondary infection.
I was dizzy and incoherent for the most part and still had major kidney and abdominal pain.
So I took the first tablet, vomited and was back on the toilet in two hours.
I fell on the floor at one point (due to dizziness) and then called an ambulance again.
The paramedics suspected I had experienced an allergic reaction to the antibiotics and called the GP for further advice. They said again that all the signs of fever were not present so they could not admit me to hospital and that the GP would provide support; although of course, this would be through the national triage service and not the local GP’s surgery as the NHS was under such pressure at this time.
I tried to rest and had no energy. The GP was due to call back but didn’t.
Six days passed and I was still feeling no better. I called and asked for some antibiotics again. I was terrified of taking anything by this time, mainly as the only thing I could really eat and keep down was bananas and water.
I had totally lost my sense of smell and taste at the start and I still had no appetite. I had lost over a stone in weight in under a month. I was drinking to keep up fluid levels, although there was little improvement in the condition each day, possibly with progress of 1% each day.
Since Day 3, I had been doing eucalyptus inhalations with my head over a bowl of near boiling water, to try and keep my lungs clear when I had shortness of breath.
My conclusion is that this is no virus as we would think of it, this is a chronic health condition waiting to strike anybody at any time.
I started to take the tablets and some of the abdominal pain got marginally better from Day 26 onwards, I was on these antibiotics for 7 days.
By Day 33, I was still feeling that progress was much slower than I would have expected, so I requested a visit with a GP and was asked to attend a ‘hot hub medical centre’ for a physical exam. They were concerned that the condition seemed to have been going on for a prolonged length of time and agreed to check me out that day.
By this time, there seemed to be a change in their approach and attitude and I think that this was because there was more data and information coming through with regard to the fact that the virus could have diversified and has differing variations in terms of symptoms. Abdominal pain had now been identified in other cases across the UK as a possible identifier.
I hadn’t been out of the house during this time due to self-isolating and not being sure if I was still infectious to others. I hadn’t even been dressed, let alone driven a car. I had been dizzy over the past few weeks, but that day I felt well enough to drive the short distance to the surgery as I wanted to try and piece things together and start to get some answers.
I had started to try and go out in the garden and the weather was kind, but my anxiety was overriding everything at all times with fear being the primary driver. I was pacing the house like a caged animal, my concentration on anything was limited to seconds rather than minutes or hours. I could not watch TV or find pleasure in any activity.
Calls to family were brief as the mental exertion to speak was exhausting. My neighbours and family were monitoring me 24/7 and during the first week, my mother was so concerned that she had not heard from me that the neighbour let herself in with a key and called to me up the stairs to check that I was still conscious.
By Day 33, I just wanted human contact and to speak to someone who could medically reassure me, and start to try and piece together what the hell had happened, and how much longer recovery could possibly be.
For all this time, I had ice cold hands and feet and heart palpitations and these were not improving either.
I had to sit in the car park at a local medical centre to await the physical exam and the doctor called my mobile/cell number and said to come around to the side of the building wearing the mask the paramedics had left with me. He said not to be scared that they would be fully ‘tooled up’ with visors and masks. At this session, he examined me and I still had extreme lumbar pain, right kidney pain and abdominal pain. Again, they could not test me for the virus, as they had no kits.
He diagnosed that I now had post viral fatigue.
He confirmed that I probably had the virus, but would no longer be infectious and I quote him here:
‘It’s a quick and hard hitter, it’s in and out in 14 days. If it doesn’t get to your lungs then you’re OK and will start to recover, but we don’t know how long that could be.’
He said it could take a number of weeks to fully recover physically from the virus and that it would be a slow process.
From this point, he was advising recovery in possibly 2–3 weeks but possibly even more to fully feel more ‘normal’. He was reticent to commit to a timescale and that’s because at this time, the honest answer is that the GPs and NHS didn’t know enough to be able to give the public accurate information. He also confirmed that at some point my kidneys had probably shut down, so I also had severe dehydration and needed to keep fluid intake up.
I felt somewhat relieved with this reassurance. He tested my urine and said that if there was a UTI or kidney infection, it was all clear now and my oxygen levels were fine in my lungs.
He said to try and start to move around and get some light exercise, and to do yoga stretching to improve tightness in my chest that I was still experiencing, and also to improve the cold hands and feet which was part of a circulatory legacy of the virus. I was using a hot water bottle all day to try and heat up my feet and often my hands and would have to continue to do this until my circulation ‘normalised’.
I went home with a slight sense of optimism, that I could be over the worst and was now in fact possibly recovering.
A few days later, the left side of my body went numb in my arm and leg, I had severe heart palpitations lasting 16 hours, and pins and needles and numbness. Petrified, I called 111 and they ran me through phone triage and asked me to go immediately to A and E, so my wonderful neighbour drove me there, where they took a second ECG (clear) and my blood pressure (high side of normal).
They sent me home within the hour.
They had no way of testing me either to see if I would have tested positive for the virus or to do an antigen test either. They referred me back to the GP.
I called the GP the next day to request full blood work and luckily got an appointment the next day, I needed to know what was going on and if there were in fact any other underlying physical symptoms that had been part of the ‘fall out’ internally of this virus.
I received the results on Day 44 of my recovery, and I am glad to say they are all normal! There is a slight elevation on liver enzymes but they believe that may be due to the recent antibiotics. They will test again in a couple of weeks and by this time they should hopefully normalise.
During this time, my mental health has come undone. Not only have I been hit by the virus, I have been alone, as my husband was in Wales when the lockdown came and there are only normally the two of us at home. I am grateful that he was there (which sounds odd), as he has a kidney condition that could potentially mean that he is more at risk than I am if he contracted the virus at any point.
I have now reached out to a mental health support service via the NHS, as I am still not able to sleep for much more than 2 hours without waking and needing a drink, and I am still experiencing nightmares and some sweating due to the memories resurfacing.
The ‘butterfly’ surges are still present and sometimes continue from 4pm through the night to the same time the next day. I have raging tinnitus in both ears when the surges come as well, and this means that I never get any form of peaceful rest. It’s still only just bordering on being manageable and of course there are no over the counter medications that you can take to alleviate the pain.
I never wanted to write this article to scare anyone. I hope if anything, it could help people better understand the virus and illness and that, while it may present differently for different people, the horror of the symptoms and the PTSD that it can cause life changing for anyone.
It is likely to be at least a few more months before I feel fully well and because this is such an unknown illness, I still don’t personally know and cannot be assured that the fatigue may be ongoing. Oddly I have some days now where I feel better than I have done for weeks, followed by a night that sets me back in terms of progress.
I would suggest that neurology and anxiety have played a large part in my own experience of this illness and that in many ways, being physically ill is challenging enough with something major of this nature, let alone having to also cope with repairing your mental health on top of this.
I went to bed on 23rd March 2020 and awoke a month later to find my whole world had changed. I was separated from my husband, severely unwell physically and mentally, not able to go out, and totally disorientated. As a normally healthy and optimistic woman of 48 years of age, I could not have foreseen this and I am only one individual in a country of millions.
I am now two stone lighter in weight than I was nearly six weeks ago, with my stomach and digestion still not being 100% and I think that this will be the last final part to physically heal as part of the ongoing process.
I feel that the UK government had a responsibility protect the nation more fully, given what happened in China and especially what then subsequently happened in Spain and Italy. I am not sure I have any confidence at all in the leadership of the UK currently. When you consider the leadership shown across the world and look at the data, the UK is not ‘leading the pack’ and we should be. We have the capacity and resources, but not seemingly the right people in parliament.
But that’s a discussion for another time.
So what am I grateful for?
I am blessed to be here, more grateful than ever for my own health, my family and being able to see the sun rise. Things like this change your life and teach you things that alter your whole perspective. I am grateful to be making steps towards recovery when I am fully aware that other people and families may not have been so lucky.
What’s my advice?
Look after your friends, family and those around you. Human beings are the most precious things alongside our planet, nature ultimately has control of all of us after all. We need to look after them.
I am forever indebted to the team of NHS staff and professionals that have helped me during this time: from the paramedics to the reception staff and everyone in between that has supported me. I owe you everything.
Thank you seems so very arbitrary in this situation, but I am deeply grateful for the patience and knowledge of everyone that has helped me over the past few weeks and I will be forever grateful for your sacrifices in order to look after my wellbeing.
Please look after yourself and stay at home. Protect yourself by wearing a mask and following guidelines.
It’s frustrating, but safe, to stay at home and I wouldn’t want anyone to have to go through what I have experienced, which would probably be classified as a ‘moderate’ case of COVID-19 (if I can ever get tested).
This article first appeared on Medium.