My Long Covid Journey
In the beginning:
Having thought I had mostly recovered from an acute Covid infection in October 2021, in mid-December, I had a sudden, severe crash. Without warning, the room span, my heart started beating like crazy and I was shaking uncontrollably. I was in bed for days, feeling like I was literally dying. My resting heart rate was over 190 bpm, my mind felt completely out of my control and I could barely access language to communicate. Two doctors and a nurse dismissed it as ‘just anxiety’ and gave me patronising eye squints above their masks as they handed me prescriptions for propranolol that steadily increased in size, despite my protests that something felt seriously wrong.
One day I was a happy, healthy (although tired after Covid) and generally pretty stoic working mum of two, who didn’t even know what ‘Post-Acute COVID-19 Syndrome’ was; the next I completely lost executive functioning for weeks, which would turn to months, with the following:
• Heart arrhythmia & palpitations
• Extreme, life-halting fatigue
• Cluster headaches
• Brian fog - varied from depersonalisation to being unable to speak / access language
• Sense of impending doom
• Suicidal thoughts
• Pins & needles
• Shaking uncontrollably
• Muscle spasms
• Enlarged lymph nodes in neck
• Rash on/around mouth
With the doctors’ words in my head and unable to think rationally, I convinced myself I was having some sort of mysterious nervous breakdown, so in desperation, I booked in with my therapist. By the time the New Year had passed, and I could get an appointment, I was pretty consistently dissociating, having spent about a fortnight or more in fight/flight mode. I was scared and in tears, telling her I felt like I was grieving my own death. I was still here, and my body was functioning (albeit poorly), but any sense of identity, vibrancy, sharpness of mind or hope for the future was completely gone. I could see nothing for me to hold on to that could make me want to stay alive. She said 4 things:
• If you had just been ‘a bit tired’, would you have listened and taken a break? Sometimes our bodies need to make us listen.
• You made it out of bed to get here; you are better than you were. You are not sick; you are healing.
• Robyn hasn’t gone. You know you can’t unlearn who you are. Your brain needs to focus on healing, so she is on pause for a moment. She’ll be back.
• Google ‘long covid’ - I think you have it.
The next day I called my surgery and thankfully spoke to a wonderfully supportive and proactive doctor. She confirmed ‘post-acute covid-19 syndrome’, immediately recommended no work and strict rest to get me out of what she observed as ‘clearly rock bottom’. Through tears, I studiously informed her I was doing my best, I had made it out of bed and was going for walks to interrupt the anxiety cycle via bilateral stimulation, breathing and… She chuckled and said, ‘I’m afraid you can’t intellectualise your way out of this, you are actually going to have to go through it and it’s going to take a while.’ She then pointed out I first needed energy to do the work I was putting in, so instructed me to rest before I started any attempt at actively working towards recovery. The doctor agreed to regularly check on me which she still does now - a supportive doctor is a huge help.
Journey of recovery:
After my diagnosis, I made the mistake of joining a couple support groups. At first, it’s great to see you’re not alone. Very quickly, it feeds the fear that you will never get better. I put out a post in a group asking for hope by way of recovery stories - in a group that can generally get 100+ comments on a post discussing symptoms, I got 6. They all said there are none. I began googling and quickly found that I would have this condition for at least a year, if not life. My doctor sent me links to ME/CFS which, whilst well-meant, only added to my fear that this was my life now. This was the most difficult thought to deal with; I’m relied on as a mum, a wife, a family member, a friend and a counsellor. I couldn’t be all the things I was anymore, and it terrified me that I might not be that person again. I felt like a burden, better off out of everyone’s way. All the plans and hope I had for my life had vanished. My husband, parents, and friend all sat at different times and listened to me cry for hours that I couldn’t live like this. It was the darkest period of my life - I wish I could go back to that version of me and tell her how in just a few months, I wouldn’t be able to even fully comprehend those feelings or that place anymore.
Somehow, after a bit of time had passed and I was noticing a very small and slow improvement, I found enough mental capacity to dig again and googled ‘long covid recovery stories’. There wasn’t much, but there were a few articles that gave the hope and the insight I was desperate for. Just the knowledge that recovery is possible lifted something in me and blew away the dark cloud I’d been under. Something clicked somewhere in the back of my mind - I believed I could get through this. This wasn’t a miraculous moment in which my symptoms lifted, and I lived happily ever after; this was the moment my unconscious and conscious mind found hope and shifted to believe in my recovery.
Dr Paul Garner’s interview on Positively Covid really struck a chord with me. There are 2 groups of long covid sufferers - the ones who believe in the mind-body connection and believe they can recover, and the ones who believe this is purely bio-medical and are waiting for the cure to be found. The former tends to recover (and likely leave the support groups, if they ever joined), the latter doesn’t. He also talked of accepting this is not something to be beaten; it must be accommodated, and it will pass. My solution to this is simply a bit of rough pacing in the back of my mind - enough that I don’t overdo things, but not so much that I am constantly body scanning, as this is detrimental to recovery as it reinforced a hyper-vigilant state.
If I was at 0% when the post covid syndrome began, I would say I got to 30% very slowly on meds and rest. On realising recovery was possible, I shot very quickly (within a couple days) to 60% and have steadily increased to about 90% since.
My recovery has been via:
Propranolol (short term) - for heart arrhythmia & palpitations
Zopiclone & diazepam (short term) - to help me rest to at the beginning
Amitryptiline (medium term) - for ongoing insomnia, to lift my mood and stop cluster headaches & muscle spasms longer term
Rest - to get over the worst of the Chronic Fatigue Syndrome
Walking - to help spend the adrenaline surges and improve physical stamina and mental health
Reading positive stories - to provide hope
Leaving support groups / negative Long Covid discussions - to stop feeding any fear about not recovering
In my job as a counsellor, I am regularly reminding people that the mind and body are not separate beings. The idea that a disorder such as anxiety is ‘just in your head’ is nonsense - our brain is housed within the same body as all our other organs and there’s no magic dividing line in our necks! How is, say, a rapid heartbeat purely ‘in our heads’? In addition, what makes a medical issue involving the brain somehow less valid? If we hurt our arm, the response is never ‘Oh it’s all in your arm, just get over it!’.
In the anxiety cycle, we experience something that our mind perceives to be a threat, which triggers our brain to begin the fight/flight response we all know in our bodies as racing heart, hypervigilance, etc. Typically, the threat is fought off / escaped from, so adrenaline is spent and the parasympathetic response kicks in to calm us down. Mind and body work as one to keep us safe.
For some long covid sufferers, the fight/flight is being activated indefinitely. We can feel in a state of sheer irrational panic throughout our bodies for an unbearably long time. At my worst, I was effectively in a panic attack for 3 days straight, no sleep, it was hell. All I could do was lay in bed, shake violently and feel utter terror at absolutely nothing. This sort of nervous system behaviour is something I see in people with anxiety/panic disorders and PTSD/CPTSD. The work to recover is in advocating for your poor struggling nervous system by actively intercepting the loop that it’s stuck in. There is much talk of neuroplasticity in long covid recovery (the brain’s capacity to change, learn, grow, etc.) - in this instance, in a nutshell, if I can consciously put the work in to spend the adrenaline with physical activity and reassure myself there is no threat via mindfulness, relaxation etc, eventually my subconscious will relearn this ability, too.
Effective practices for me included:
• Meditation & positive health & wellbeing affirmations (can be found on youtube/spotify etc)
• Actively seeking out activities / things that make me happy (cautious graded activities to avoid fatigue)
• Practising daily gratitudes
A great ongoing, daily combination for me is walking my dog in the woods for an hour whilst listening to funny podcasts (my current favourite is the It’s Always Sunny In Philadelphia podcast - I walk and smile / belly-laugh to myself!), followed by 30-60 mins of yoga (I love Yoga with Adriene on YouTube as it’s very physically accessible and she combines this with a really great mindfulness-based and compassion-focussed approach).
Advice from my experience:
No emotional or physical state stays the same forever - a really cruel part of this nervous system reaction can cause you to feel this is it and you will never get better. This is because when our bodies are in fight/flight, they deliberately keep you fixated on the present moment to keep you ‘safe’. If the caveman started to slow down and think about his chilled evening plans in the cave as he ran from the lion, things may be even less likely to end well for him! I promise it will pass and you will feel better.
Mentally externalising the part of the mind that panics or the part that feels depressed etc can help maintain a positive sense of self and remind us we’re not always in this mode. It can add a bit of humour too - e.g. “Anxious Andrew’s kicking off again, I’ll allow him a couple minutes to flap, then I’ll thank him and get him to sit back down.” (Just remember to be kind to poor Andrew, he only wants to keep you safe!).
CBT (Cognitive Behavioural Therapy) of course is very helpful. For me, I couldn’t control a moment of panic that came without warning, but I could find a sense of control in changing rooms/environment, sitting with my head between my knees, having a biscuit and a sugary tea (my doctor says sugar levels are often affected in Long Covid) - behaviours can change cognitions and vice versa. This isn’t a magic and immediate fix; it takes commitment and work, but you can get there.
Keep the bigger picture in mind as recovery is not linear. I’ve lost count of the times I thought I was feeling better, only to be completely devastated at a relapse. It is gutting, but each one taught me a limit or a new piece of the long covid puzzle (in hindsight, I was just getting excited about feeling an improvement and immediately overdoing it!). The less you panic and beat yourself up for these crashes and the more you listen and take the lesson, the less frequent and smaller they become. I’m now 5 months post-covid and can pretty much engage in everything I want to as long as I pace it. The crashes are just half a day at worst, every now and then, rather than multiple days at a time with the odd ok-ish day in between.
Important lessons to take forward:
It can feel like the work to recover is a full-time job (it took me 7 months of daily work), but I promise it is possible to smile and laugh again even from a place of utter hopelessness. I’m deliberately not saying to ‘go back to normal’ here, as this experience has made me reflect on my ‘normal’ and what I would like to change. I often work with people facing end of life, bereavement or other life-changing events. In my experience, these people never reflect back and wish they had spent more time working or owned the bigger house or the flashier car. They wish they had slowed down, taken more walks, let the washing pile up and dust gather now and then, and spent more quality time with loved ones. This ordeal has highlighted some wonderful friendships. I’ve been so grateful for the ways people have shown up for me and my family and I will always remember how lucky I am. I’ve decided the goal is no longer to get my pre-long-covid life back, it’s to make an even better post-long-covid life full of happiness, self-compassion and all the priceless stuff that really matters. I’m off for a walk in the sun with the dog!