Diary of a long hauler – COVID and me.

17th April 2021

For as long as I can remember I have always tried to test my limits and challenge what I am capable of. I don’t believe I have ever allowed any perceived limitations to stand in my way nor have I allowed them to stop me going for what I want. I have run marathons, climbed Kilimanjaro, jumped out of a plane, bungee jumped, challenged myself intellectually with qualifications and learning amongst other things. This is not a brag post but I am proud of the things I have gone for in my life and continue to strive but for the first time in a long time I am totally stumped. 

I am a fixer by nature. If I have a problem, it might upset me and challenge me for a while but I always put myself to work to discover a solution and I will try and find what works and continue to improve and learn over time until I hone my solution into something more effective. Without wishing to over simplify that process this does not mean that I don’t agonise over things, feel stuck or feel like the world is against me at times and question my decisions, I absolutely do but once I have come through that phase my resilience kicks in and I find a new path. 

I do the same with the people I work with. I am hopeful, optimistic and will do my damnedest to find a way through any situation. It’s what makes me a good coach and teacher, I will reframe the situation and look for new perspectives. 

But at the moment, I am truly stuck. Right now, there seem to be no fixes for my situation and that of at least 1.1 million other individuals right now. This feels like the biggest challenge I have faced for quite some time. 

There is a part of the story of the global pandemic that is only really just coming to light and if you haven’t experienced it yourself or seen the effects of it close to home, it can be hard to appreciate but ‘long COVID’ is having a huge impact on at least 1.1 million people in this country and I suspect that number is actually higher. The focus quite rightly has been on the numbers of deaths and cases each day and the hot topic of vaccines too. But as we begin to move forward the world is beginning to to learn that there is another element that perhaps we had not envisaged and that is post covid syndrome. 

We are given our instructions about what to do when we get symptoms and then the positive test. We isolate for ten days, we rest, drink water, take paracetamol and wait until we get better and unless we are gravely ill we stay at home. I became ill with COVID in January of this year and did all those things. I would say I had a mild to moderate case. I felt pretty unwell and struggled with high fever, crushing headaches, extreme tiredness/fatigue and the aches and pains that I would have expected. In actual fact it felt quite flu like to me. I did not have a cough, nor did I lose my sense of taste or smell and after about ten days I felt like I was out of the woods and expected to start to feel better. Initially that was true, I felt like everything eased up for me and then the fever returned with a vengeance. I had been warned to look out for days 9 – 14 and that those days can be challenging as you think you are on the road to recovery but the force of the virus is felt once more. Yet, I remained optimistic, others had experienced the same so I felt it would be ok. The returning fever meant that it was like going back to the start again, the headaches returned and fatigue persisted. Once again I began to focus on my recovery, my positive outlook remained and I rested when I could and my family were very supportive. I didn’t expect to bounce back after a couple weeks as I figured it might take a while to restore my health but little did I expect that 3 months later that I would be battling so many strange and recurring symptoms despite now being ‘over’ the virus.

Just to set the scene a little, I am a 42 year old woman with absolutely no underlying health conditions. I was fit and healthy before COVID, ate a nutrient rich diet, zero alcohol, non smoker. I exercised regularly and looked after myself generally. I say that because I think we have been led to believe that people who are struggling with issues are those people who had a condition before hand and yes there is truth to that but that is not the case across the board. I know myself that I felt very hopeful that I would make a full and quick recovery because the statistics told us that right? I am not a conspiracy theorist but there is so much more behind the statistics. Real people with real stories and I am one of them. I have read and continue to read much worse than I am experiencing too. 

Since January I haven’t felt once that I have recovered or been back to my ‘normal self’. I have had days here and there and no more than a couple in a row where I have felt that maybe I was improving but every single time I have been put back on my arse by a relapse. The fatigue has been constant and the burning sensation in my lungs has been every day too in varying degrees. When I say fatigue I don’t mean tiredness, I know tiredness as I have two young children! What I am talking about here is exhaustion that feels deep in my bones, that rest and good sleep does not resolve. I have a headache of some degree every day. My fever has returned 6 times since originally being ill and when it does, I suddenly start shivering so badly and then burn up. It lasts for 24 -36 hours leaving me feeling like I am back to square one again at the bottom of a very large incline. Brain fog means that my memory is suffering and I struggle to get the words out that I want to. I feel like I am a sloth trying to wade through mud. SLOW! I don’t get anywhere fast. 

This week I developed pains that took me to the hospital – I spent 10 hours there being tested, scanned in every way possible, blood tests, the works. The surgeon was convinced that I either had a gall bladder problem or appendicitis. As sad as this sounds I was truly hoping for an answer  and whilst I would not really wish to have surgery, if there had been an explanation for all the things I have been going through that resulted in some keyhole surgery, honestly, I would have bitten their arm off. My scans were clear, they could find nothing surgically that needed attention. I went home feeling a bit broken and feeling like there was no hope. 

So the saga continues. It’s important to mention the toll on my emotional and mental health as it has hit me hard. Feeling depressed, low, anxious are not unfamiliar to me prior to COVID and I have devoted a huge amount of my time and energy to self development over the years and I feel that I manage the trials and tribulations and stresses of life fairly well but being ill for so long as really drained my emotional strength. I have felt hopeless, despairing, scared, depressed, anxious, lonely amongst others over the course of the last few months in more extreme measures. It has been exhausting to feel a sense of hope that maybe this time I will continue to improve but yet again finding myself back in bed. 

I have often been asked ‘are you better now?’ Which of course is a well meaning question but is so hard to answer because people don’t really want to hear all about it. I often just reply, yes not too bad thanks (how very British!) The truth is no I am not but honestly I am doing what I can and some days I can ‘function’ fairly well but many I can’t. 

I have taken vitamins to help my health, I research and read and have joined forums where thousands of other share their similar stories for support and yet the truth is, there just isn’t enough knowledge on the long term impact of this awful virus. The doctor who diligently cared for me at the hospital this week said the same, they just don’t know enough. 

‘You must rest’ I am told! Yes I know,’ I scream inside my head. Even that isn’t easy right? You mean sit down and do nothing? Where I have to face all of the thoughts in my head? Errrrr not appealing at all for most of us. I have battled with this over and over because there is so much guilt around resting – or as I have phrased it – doing nothing. I see my husband taking over the lion’s share of everything right now and it makes me feel guilty, I want to be out playing in the sunshine with my children and feel immense guilt that I am not up to it. I want to be able to throw myself into work and feel so guilty that I can’t. So much guilt. So actually the reframe for me here is to know that I am resting with purpose. I need to remind myself of that every day that rest is the road to recovery because I so desperately want to emerge into the sunshine and social life with the rest of the world but right now I am not able to get excited about that because walking up the stairs puts me out of breath. 

I have had the words surrender and acceptance lurking in my brain for sometime in relation to my recovery and have been meaning to explore them. The truth is I am frightened of surrendering because I do not want to give into this virus anymore than I already have and I do not want to have a ‘victim’ mindset. I also know that in resisting and fighting I am denying the impact that it’s having and I am trying to push through something that is not going to back down or be out done by vitamins. 

So what could surrender and acceptance mean for me? That I am still not well but that does not mean that this is forever, just for now. That I can accept help and that does not make me weak (another tricky one for me) and that my health has to be a priority for the sake of my whole family. That I can rest and the whole world will not stop turning… That being ill does not make me a failure. 

Any of these landing with you too? Why do we find it so hard to be still? When I started this blog just shy of a year ago, I called it ‘Learning to be Still’ because I knew it is one of the hardest things to learn and boy am I right in the thick of it now. The badge of busy-ness, our need to be DO-ing rather than BE-ing. It’s all staring me in the face right now and I am working through it but its a tough one. 

So back to my starting point around limitations. I am reminding myself that I do actually have limitations but that respecting them is actually really important right now. I am trying to see them in the same way I do with boundaries, they are essential to protecting our energy both physically and emotionally. I am learning that by respecting these limitations and boundaries that I am not weak, or a failure or a bad mother…. etc. It is a really tough but vital lesson and I suspect it will be challenging me for a while yet.  The world will not stop turning because we have to down tools for a while.