Where the lava meets the sea
At some point reasonably early in my illness, in the months after my initial Covid infection morphed into something unshakable and draining, I watched a nature documentary about this huge volcanic eruption on a Pacific island. I remember the folds of enveloping, molten rock cascading over the island, swallowing up mouthfuls of burnt rainforest, the sky turned dark. I was so struck with this comparison, as my lungs burned, as this smothering weight of the fatigue crushed my body. I wondered if I was buried beneath it all, under this unstoppable tide of rock. Will I ever recover fully?
But let us rewind to the start. It’s the 23rd of March 2020, exactly one year ago at time of publishing. I am one of the skeleton crew at work, but I am feeling unwell, just generally run down and feeling a bit grotty. I call work to get them to pack up my gear, I’ll be working from home for a while. After a socially distanced collection, I drove home and set up my office, immediately went to bed and passed out. When I woke up my hands and feet were ice cold, but I ran a fever. About an hour later I had a cough, next a pervasive nausea. While I was awake, I managed to catch both the announcements by Nicola Sturgeon and Boris Johnson; lockdown was upon us. Months of me following the coronavirus story, anxiously anticipating what massive changes it would bring to us all, and here I was. Strangely unwell, with the world closing up around me. I felt like I was sailing into a storm.
I remember at one point, when breathlessness left me gasping even while sitting in my armchair or lying in bed, I very much looked at the prospect I might be one of the unlucky ones in my age bracket who end up in hospital and, perhaps, even die. I could never quite decide if this was a rational fear or something triggered by the conditions I was in — particularly the sensation of being short of breath which had come on one evening rapidly; it felt to me as never quite catching my breath, always falling short: like returning upstairs in the dark, going to step for a stair that jarringly isn’t there — but your life is a series of missed stairs every few seconds. There’s nothing like the sensation of slow, persistent strangulation from moment to moment to make you feel that something is profoundly wrong.
At worst it was like I was wearing a two-sizes-too-tight corset (a comparison which wrong-footed the 111 operator I spoke to, before I could explain my sparkling four-time Pantomime Dame career behind me), other times it felt like a series of weights glued inside my chest I couldn’t shift. The sensation of smothering, of uncomfortably existing between short, drawn breaths. The 111 operators assured me I was not in need of hospitalisation, but I was scared and alone. I packed a bag, just in case I ever needed to go to hospital.
During the first week or so of these symptoms I tried to do all the right things, rest up, and simply try and pass the time the best I could. I ran the gamut of very strange randomly shifting symptoms, from dizziness to fever chills, constantly feeling tired but unable to sleep, nearly passing out in the shower, to a powerful mouth watering nausea, to historical running injuries hurting as if they had just been sprained again, and even mild hallucinations of wee beasties out of the corner of my eye. I didn’t cook much, and did the bare minimum of domestic tasks, knowing I could pick up the slack in the future. I tried to watch TV, but even sitting up was uncomfortable for my weak core. I found lying on my side and playing Animal Crossing was the perfect combination of comfort and escapism.
After ten days of these symptoms, I began to feel much better. I was grasping towards normality again, able to do the dishes while dancing to Carly Rae Jepsen without recourse, take the bins out, cook a little bit; like my regular self. I’d never been happier to don the Marigolds. I was almost certainly in the group of people who would survive this virus. I was euphoric, like emerging from the depths and feeling the pressure alleviate with every moment. I’d gotten through this! My fears were receding. I felt up to getting back to normal fully and arranged to start back at work on Monday.
But I wasn’t clear yet.
***
On the Monday I was to start work, two weeks after the infection — I felt like I’d been hit by a bus. The fatigue was bone crushing. I ached from top to toe, the historical running injuries burning in my legs, and breathlessness worse than anything up to that point. On consulting 111 again, they thought I was just going through another bout of it and on a video consultation, my breathing seemed to be okay if quite shallow. I should just rest this off, stick on a box set and give myself more time to heal. I signed off a few weeks from work and waited for recovery to kick in.
The next few weeks were amongst the worst I’ve been with the virus, as the symptoms I described on the Monday hit me harder and harder, my mind turned to mush as severe brain fog kicked in, I developed profound muscle weakness, hardly able to hold a phone to respond to messages, dropped plates as I tried to brush crumbs off them, I couldn’t sit upright for too long, short conversations on the phone or on video wiped me out, and breathlessness reared its ugly head again. I remember two feelings from that time: a laser like focus on survival and a profound sense of loneliness. I was alone in my flat. I had conversations with my parents through an open window one floor up, or later as I became more confident I wasn’t infectious through an open doorway but spaced about 3 metres apart. I tried to speak to my Edinburgh-based girlfriend the best I could, and she gamely provided things for us to spend time together virtually (like brilliantly devised quizzes) but my communication was desperately impeded. Friends dropped off food and magazines but I felt totally locked in. I was scared again. I should be getting better, it’s been over two weeks — Covid shouldn’t be like this?
After a conversation I had with my mum out the door, she told me I seemed so down, so weak, so overwhelmed by the situation that she cried all the way home. She suggested I move home to help my recovery. I was hesitant, thinking good health was only a few weeks away — but following a bad evening of short breathing and realising it took me four days to even do a load of laundry, I decided I would move in with my parents and let them help me with my recovery.
That was the last time that I would live without being dependent on someone else for my care. That was early May 2020, five weeks from first displaying symptoms. Now, as of March 23rd 2021, it has been 47 weeks since moving home and counting.
***
In the nearly eleven months since, I have either lived with my folks or stayed in my flat looked after by my girlfriend when she could safely travel to Aberdeen. Since I became unwell I have been through a dizzying array of issues with my body, including (but not limited to):
- Fatigue, the big one. It feels like I have a big elastic bungee cord strapped to my back, and I’m running on one of those bouncy obstacle courses you see at village fetes, I can run as powerfully and majestically as I like, but if I go too far I get snapped back. My life is a constant process of managing my energy economy — I have limited resources, and if I go over my limits I pay a price with exhaustion, flare up of other symptoms. Sometimes when it is extreme I can’t leave my bed for days. Fatigue is the biggest inhibitor in my life: the one thing I would wish away if I could. It has gotten slightly better over time (barring relapses), and really most importantly gotten more predictable which helps me maximise my desired outputs for my available inputs (…can you tell I’m an engineer by trade?).
- Weakness, mainly my core, and specifically where my abdominal muscles meet my ribs or at the pelvic area is where I experience strain. This can make sitting up difficult, at my worst sitting up for more than 20 mins at a time was actively painful. At time of writing I can manage about two hours sitting at a desk (most of this essay was written on my phone from bed!). This made working a challenge, I had to take regular breaks and split my day into 11am-1pm, 3.30–5.30pm chunks. I find reading quite challenging also, and sometimes even sitting up playing video games is too tiring and uncomfortable — so when I rest I lie on my side and watch videos on my tablet. Some light physio rehab I have received to help my posture and strengthen my middle has helped, but this worsens with relapses.
- Lung, predominantly a shortness of breath which isn’t alleviated by an asthma inhaler. It was so bad in the summer of 2020 that carrying a light aluminium chair 10 metres across the garden left me out of breath. Thankfully, with a little bit of DIY rehab, I found some breathing exercises (look up square breathing) which really helped me regulate my breathing again, to the point where I can walk comfortably for about 45–60 mins without big issues. I have had a chest x-ray in summer 2020, which came back all clear! No visible scarring which is a positive. I suspect this is to do with my breathing muscles just getting out of sync, and lacking regulation, which may link to my painful upper core area.
- Stomach / digestive, from burning pain in my abdomen, to heartburn, to digestive tract issues, to bloating, to nausea and extreme tiredness brought on from eating too much. Eating too much is a distressingly high proportion of my personality, therefore it has been a crushing blow to move to “moderated portions”. These symptoms do come and go, with relapses making them worse.
- Heart, my heart rate occasionally spikes up to around 120BPM when I’m even just lying down in bed, watching something not especially exhilarating, sometimes literally videos of plants growing. It also shoots up for a few minutes when I stand up from sitting or lying down. Recently when I was in the middle of a pretty acute relapse, I went for a walk and within 4 minutes I got recordings as if I’d gone out for a run. I experienced heart palpitations and occasional ectopic beats too. I had been on a waiting list for a echocardio scan for about 9.5 months at the time of writing. I recently decided to go private to expedite the process, and will be having my first session with the consultant very soon. The last thing that I want to discover I have from Covid, as a henceforth healthy 29 year old, is a heart condition, but we shall see whatever the wind brings. I think it could be something else in my immune or neurological systems which is again just in imbalance, but of course this is just my speculation.
- Brain / neurological, I experienced the dreaded brain fog often associated with Long Covid. It impaired my recall, particularly trying to remember particular names, or words, or specific pieces of information. Thinking also felt more sluggish, as if my brain was running Windows 95 and harbouring seventeen trojan viruses. I found myself struggling to process instructions, struggling to solve problems, my head felt full of steel wool and one evening I descended into slurring my words as if I’d had eight pints when the reality is I’ve been as sober as a judge since Jan 1st 2020. I also regularly experience moderate headaches, especially after desk work or doing too much exercise, which are just about manageable with paracetamol.
- Pain alongside the headaches, I experience pain in my core and where my ribs meet my abdominals, which I am trying to treat with some strengthening exercises and not overdoing laptop work. In addition, occasionally I get very achy joints in my hips particularly.
- Miscellaneous, The final odds and ends: an unquenchable thirst (though possibly exaggerated by other unrelated medication), a throat that often needs cleared and some minor skin issues have become worse and been tricky to control, and persistent and heavy eyebags.
During all of this I have cut out alcohol, caffeine, minimised sugar intake and exerted portion control in some attempt to give my body a bit of a respite.
Before I became unwell I experienced none of these issues, and definitely nothing to this range or intensity before. I’ve had only limited symptomatic support from the NHS as long Covid clinics don’t exist in Scotland as they do in England, but I should point out that in England access and availability can be patchy. Ultimately, the essence of long Covid recovery is non-linear, or perhaps also non-Euclidean. It’s so hard to see progress, so hard to discern betterment in these random patterns of undulating symptoms. No steady S-curve of improvement you can set your watch to. Less like Sispiphus rolling his boulder up a mountain for eternity, but taking it “up” a series of MC Escher staircases.
This has massively impacted my ability to work. I was on sick leave, then on furlough leave from March until August — where I started back at work on a flexible arrangement where I could work as much as I could, and backfill the rest of my hours with sick leave or annual leave. I was happy with this arrangement, and over the course of August to December I slowly climbed up my worked hours from an average of 1.3hrs to 3.6hrs per day. I was able to track my progression, graph my hours worked, see myself getting better hour by hour, down to the decimal point. But I was still greatly impaired in what I could do, still tired and sore from sitting up too long, still foggy from mundane tasks, still needing to rest an hour for each hour worked. I was given notice of my redundancy in January, due to business constraints following difficulties in the North Sea oil and gas sector, and while I was very upset to say goodbye to a place I enjoyed working for the last six years, now I can live on my savings and whatever additional support I can get, and use my available time for recovery or whatever project I want.
I still don’t know when (if?) I’ll be able to work full time again, or what employment opportunities lie ahead of me. I am trying to teach myself Python and improve my Excel skills, give myself projects like building a Holyrood 2021 predictor (yes I am great fun at parties) to improve skills and have fun at the same time, potentially with an aim to give myself better data experience, which might give me better flexibility in work. I really enjoyed writing this. I’m going on more walks now. Trying to keep that flame of recovery alive, and find meaning in life. Even if concrete progression is hard to find in my body, I can build it with my actions.
I’m very fortunate I’ve been looked after in one form or another for 11 months by my loving family and my wonderful girlfriend. I don’t have kids or dependants. I am able to live off my savings and benefits for a while, I own my flat and paying my mortgage is the number one thing I have to do. There are people with Long Covid who are right on the breadline, who have kids to feed, whose live-in relationships are under creaking strain, who are pushing through their symptoms and making their health worse for work. I don’t think we have even scratched the surface of the damage the virus has done to people long term; millions of people worldwide impaired from working, billions of human hours lost, the greater incidence of nebulous, little-known medical issues across the age spectrum. Let alone the millions of people who have died from Covid. I hope as we emerge from our bubbles over the next year, we don’t forget the horrendous loss this virus has brought on us.
Throughout this I have been lucky enough to have the support of the Thistle Foundation, based in Edinburgh, who provide a raft of support to people with long term conditions of all stripes. I meet with my coordinator about once a month, and even just having someone I can speak to about my recovery, identify the winning strategies that make me feel better, and instill in me the idea is simply to make way for my body to heal — has been so constructive.
In trying to let my body heal as best as possible, time has been the only reliable treatment (and even then, it’s been an erratic story of sudden relapses, steps forward and steps backward never quite giving enough forward momentum to reach escape velocity fully), so I have effectively built my days to pass time as effectively as possible. I rest a lot, I watch pretty mindless YouTube videos for hours (if you’ve ever wondered who is the type of person to watch an hour long video ranking all fourteen Land Before Time movies…. Hello, you’re looking at him, and he isn’t even ashamed), I have a routine, I mix things up a little but not so much to disturb my body too much. Walks are adventures I do about 2–3 times a week when I’m well, just once a week if I’m poorly. I use messaging apps a lot because calls knacker me out. It’s a strange balancing act of trying to pay attention to the ups and downs of particular symptoms on a day to day basis, while keeping the long perspective of: “How does this compare to last month? What about compared to three months ago? Is this getting progressively worse?”, which, incidentally, I have picked up a lot of skills with managing my diagnosed bipolar disorder. It’s been difficult because the normal bodily cues have become quite scrambled and I’ve had to learn a new language of signals my body is giving me to respond to. As an example of this, sometimes I feel like this sudden drop in my body, the closest I can describe it to is when you’ve had too much to drink and realise that in the next few minutes you have to get home, a hollow, strained feeling of singular ringing alarms. I feel that way sometimes when I’ve been sitting up for too long, or done too much on a walk or after a shower, and simply all I can do is go to bed and lie down for a few hours. I worry what I will do in the future when this kicks in when I am participating in some kind of societal “normality”, like I’m in a cafe with a pal and desperately need to lie down — will I just pop down on the floor for a few moments like a sad spaniel? Endure that feeling until I get home? It’s humiliating to think I might bring a roll out camping mattress to events where I might need a moment to lie down but, well, maybe it’s just the life I have to lead now.
There was a time in my life back in 2014 which was marred by a thick and heavy depression which very well nearly overwhelmed me — but that’s for another blog for another time. But I have learned a lot from then and the intervening years about how to find things which keep you grounded, which keep you stable. I run through these to help me stay tethered to the things that give my life meaning. I consider the love and support from my loved ones, the positive things I have in front of me on the horizon, the seemingly unlimited range of projects I want to do with my time, this overwhelming and powerful survival instinct keeping me buoyant. Even with all the difficulty and pain, this is a huge well of affirmation. I have found a source of steel within me.
I am not the same person I once was. While there are things I’ve seen in myself, great strength and resilience and an overwhelming desire to help other people like myself; I also see a lot in me now that I never wanted or expected to see. I’m much angrier. My temper is frayed like an exposed wire, sparking, surprised when it goes off so quickly. I’m concerned about my appearance in a deeply insecure way like I have never been before. I’m impatient. I feel cagey and defensive. I’m disappointed in these fissures in my character, perhaps understandable in the circumstances but I am deeply saddened about what this has brought out in me.
It is still difficult to talk effusively about the positives in this situation. This newfound resilience I have discovered comes with the hollow knock of I wish I didn’t have to discover it. I wish I could have avoided this crushing injury, somehow. Have as grim and miserable a year as everyone else but come out the other side being able to walk for more than an hour, or even sit and work for more than 4 hours a day. I regularly try to consider my situation and count the things I’m thankful for, and the things I’m thankful could have been a lot worse. But I haven’t got to a point of peace. I still feel a deep and burning injustice that I have lost something that I might never recover fully. I have been delaying the moment of fully coming to terms with that part, the possibly permanent nature of my loss, the drastically divergent paths in my future — can I work? Could I live alone? Will this block me from fundamental things I want to do in my life? — because while I see recovery as something that can happen, while I have some hope and something to keep walking towards; that gets me through each morning. There is no need to come to terms with something that might yet prove to be a temporary situation, after all.
Maybe the thing I have been so surprised and delighted to find buried in myself through all of this is a rich vein of optimism. I don’t know if I would have described myself as optimistic before this (perhaps my 8 years of Scottish Labour membership cards would beg to differ) but I definitely would think so now. It’s been the only way I have been able to cope with the grand arc of this. I have to have a long view and try to identify what has gotten better, have to keep looking out for the signs of progress, have to keep the chin up. There’s no shortcut out of this, but plenty to hope for (and while I place my logical hat on, some of the recoveries from SARS were in the 12–18 month range, so I have set my sights on next Christmas as a rough long range landmark. It may well shift but I don’t just live in hope, I survive on it).
Maybe this optimism is just another coping mechanism that will backfire on me. Maybe I ought to consider in full, and really come to terms with, the worst case scenario where a lot of possibilities are lost from me forever. But — forever is a long time. It doesn’t make sense standing on the precipice of the rest of my life to close every door in my mind and for the worst of how things might play out. Examine every possibility, but not dwell on it. I will continue to do what I have been doing for the last 365 days and take each day as it lands in my lap. To do everything I can to bring me closer to recovery. And hope. And endure this nightmare a bit longer.
I rewatched that nature documentary again. The volcano on the island. What struck me on the second viewing is while this torrent of destruction washed over the island, while there was loss, while the land was streaked with destruction — bright plumes of lava poured into the sea. While the water steamed and spluttered violently, water boiling so fast the sea was torrid rapids, entropy took over and boiled off seawater was replaced by new, cool water in this cycling heatsink. The sea never goes anywhere, it’s ever renewing.
Over time, this magmic emanation from the pit of the earth that could burn through rainforest in seconds is petrified, it becomes tangible, the heat stripped right out of it and becomes simple rock. Just by the sea being there, taking the heat away, an enduring presence that can turn lava into rock.
I realised my illness is the lava, and I am the sea. Despite everything — I will endure and I will take its heat until it finally cools.
And I can wash away at the new shore.
***
At the time of publishing, I will be getting my first vaccination tomorrow. For some people with Long Covid, there have been remissions in the illness following their jab. Tomorrow could be the beginning of the end of all of this. I desperately hope so. But if it isn’t — well, I have the rest of my life to work it out, and try to recover, and take the heat of this until it finally cools.
