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My Long Covid Journey

I had long Covid. I have fully recovered. 

It may seem like a miracle as I went from being barely able to walk to the end of my street to running my usual 5k running route and 10 mile cycling route in the space of a week. I’m not as fit as I used to be but confident, I will now get back to where I was. (Just to put this into context) I was about to do the Edinburgh marathon when Covid hit, and had just finished a 60 mile bike ride when I caught Covid) 

It’s not a miracle (but I do have to pinch myself and at times I’m overwhelmed by it, although this is improving all the time.

Let me take you back to December. I got Covid. It was mild (ish) a week of feeling about as ill as a bad flu. I didn’t have the classic three symptoms but I did have the most awful brain fog and fatigue. I recovered in time for Christmas and went back to exercise and work 

In the beginning of January I crashed. I could hardly think or function. It scared the hell out of me but after a week I felt ok again. I then crashed again and recovered again and crashed again and recovered and same cycle again and again. Each time the crashes were worse and the periods of feeling ok were shorter. This is what is known in long Covid terms as boom and bust cycles. It was the scariest illness I’ve ever experienced. Debilitating. 

On reflection, This probably happened as I was doing a lot of training and working really hard and with the viral load my body couldn’t cope. I’ve met a lot of people with both similar personalities and stories since.

I went to the gp and my bloods came back normal. They couldn’t see anything wrong with me.

By mid February I realised I needed to take time out, my amazing friends took my daughter to school, her sister came down and looked after her, my boyfriend had to clean and cook for me. I took a month off work. My friends sent me cook vouchers. I could barely function. My poor mum must have been going out of her mind as I phoned her day after day in bits. 

I then took the decision to rest. I rested like I’ve never rested before which I still believe was the right thing to do at this stage of recovery. Not just physical rest but mental and emotional rest as well.  I outsourced everything I could.

I was advised I had Long Covid, and it was the same symptoms as ME/Post viral fatigue/CFS. Main symptoms –crippling fatigue, covid toes, covid strangle throat, burning back, anxiety, tight ribs, inability to regulate my temperature and dysfunctional breathing.

Over March and April, I slowly emerged. Very slowly. I was house bound for a lot of March. It was tough at times I was so low I didn’t know how I could carry on. Without a doubt the hardest thing I’ve ever done.

Once I started to get better, I was advised by many experts that the only way to get back to full health was to PACE.  I was introduced to something called the Spoon theory. This meant building up activity so slowly that you walked, for example, an extra minute a week and only every other day to make sure you didn’t react to the increased effort and not on days where you had increased other activity such as work. I was improving but it was painstakingly slow and I was frightened.

I was told I would probably never run again and that it would take around 24 months to recover, but maybe not fully. I read books, I consulted experts. They all said the same.  I believed them. I even advised others the same thinking I was helping. I now realise this was not always the case.

I had the worst insomnia and was told this wasn’t good as would make me worse, which of course made the insomnia worse. After months of fighting insomnia and buying every sleep aid going all of which made it worse not better, I decided that mindful acceptance was a better way to go, ironically, I then started sleeping. I now sleep better than I ever have.

It wasn’t all horrendous. I discovered a wonderful yoga group for recovery from Covid, bought a hot tub, read a lot and meditated. One of the things that I am convinced helped my recovery right from the beginning was realising that the mind and body are connected. I celebrated every success, looked at what I could do and told myself daily that I would recover. I read success stories and avoided too much social media. I found things to enjoy about the down time.

I have kept some of these new hobbies. I think I’m conscious of living a slower more compassionate life now and I’ve made some new friends too 

Over the months I did notice certain patterns. I would crash just before a big work piece. I felt better when I cancelled work. Or if I thought I had overdone it, I would crash, usually 24 hours later. Same symptoms each time in the same order. As all tests had came back normal, I started to wonder whether my brain had more involvement in my recovery than I had previously thought. (I’m an NLP trainer and had done quite a bit about the mind body connection anyway and know it to be significant)

In May I went on a 3 day training course called the Lightning Process. It was a game changer. On this course I learnt lots of theories about the condition, what had caused it and what was keeping me stuck. I got lots of tools to recognise where I had control and where and how I could make different choices that would ultimately allow my body to heal. I worked on my beliefs about the condition and above all else I learnt self-compassion.

What I realised had been happening was that I had primed my brain so strongly that I should pace that every time I over did it (like a 10 minute walk when I only meant to walk 9 minutes) I would get anxious, and this would exacerbate symptoms which included a burning back and a tight throat (like being strangled) My brain would then interpret these, get more anxious, generate more symptoms, and enter a vicious cycle and then I would crash. My brain was driving the crashes due to fear of what many experts had told me and my memories of earlier crashes and what I believed (I must add again that I didn’t have anything that doctors could see wrong with, I had already done a lot of resting and was on a path to recovery, my relapses were less often and less severe and I had gone back to work but I still felt stuck in the illness)

After the course, I decided I had to have enough confidence in the theory to test it out. I got on my bike. I cycled for 20 minutes and got my Heart rate up to 150 (I had been told to stay below 100) and 24 hours later, I had anxiety which generated symptoms which led to more anxiety, but I was able to talk myself down as I now knew what it was. It was a hard leap of faith after so long believing something else. 

Since then, I’ve cycled most days, and am running three times a week. I set myself the goal of running 10 miles in July and a half marathon in August. I’ve now achieved this. I’m also cycling longer distances, doing some strength training, weights and HIIT and continue to do yoga. 

I’ve gone back to work fulltime, can now do the school run every day and am generally enjoying life more than ever before.

For anyone reading this with long Covid, I would 100% recommend contacting a Lightning course practitioner, I went with Fiona Finch who was Brilliant.

I’m often asked whether this means the illness is in the mind and the answer is no, the symptoms were absolutely real. (I was in fight or flight mode which was so bad at one point I was hyperventilating and had to have a breathing PT to rescue my breathing (which is another thing I would recommend for anyone with Long Covid) I saw Kelly Mitchell “The Breathing PT” who was incredible.

The mind body connection meant that my anxieties exacerbated real physiological symptoms, and this was literally draining all my energy causing debilitating fatigue. I learnt to influence these symptoms and make the changes I needed to feel as amazing as I do now.

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9 thoughts on “My Long Covid Journey

  1. Hiya, I think I came across you on the British heart foundation forum and the anxiety issues are very similar to what I experienced. My situation is a little different as I was in hospital for a month so i’m completely deconditioned, but the anxiety seemed to drive the problems and make them worse or self fulfilling.

    I shall be reading the rest of your blog, very interesting reading

    Natalie Wright

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  2. Hello. I’m crying reading your blog. I’m just a couple of years older than you, and also a passionate runner and athlete. I actually ran 7 miles the day my cough first started on Dec. 22, 2021. And I’ve been continuing to walk and run and lift weights, but every time I run, I crash hard that night then cannot sleep. That was me last weekend — a 5 mile run and walk each day, followed by only sleeping 6 hrs (which was a big improvement over the prior week when I couldn’t sleep at all after running, but still led to a total crash bc of not sleeping enough).

    But my big question for you. If you could start over in your recovery — do you think the rest was important? Or do you think I could safely push through and will get better?

    Thank you so much for your blog. You are one in a million right now.

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    1. these are the same answers. I personally would take some time to re evaluate and find calm first. I would keep the walks. Stop the runs. Find stability. Learn about the mind.body. Then start to build back up. slowly. While understanding what patterns may have been set. xx

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  3. Hi Rachel I’ve been watching your story snd updates since last year. I think I’m retrospect I had asymptomatic covid last summer – my only symptom was ongoing fatigue followed by a sensation of shortness of breath for months, an early pneumonia caught on xray, then full blown physical symptoms of anxiety (had no idea I was anxious!) struck last November and it’s an exhausting viscous cycle. Turns out I’ve a breathing pattern disorder – the brilliant Kelly the Breathing PT is helping me too. But I wonder if Covid disrupts the Vagus Nerve – I feel my body has been stuck on flight or flight since last year, and I can’t get it calmed down. Your reading recommendations are great esp the mind/body stuff. Glad you’re well recovered!

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    1. Hi Anna
      Fighting off covid will have put you in fight/flight mode and I believe in long covid it stays on. Fear and worry and hypervigilance about symptoms are all things that keep it switched on. I think accessing the vegas nerve is a great idea as this links to the rest/repair side of nervous system which should calm you down. I definelty think for me taking some time out was a good thing and then a phased slow return back into life. For me it was the books and meditation and commitment to do nothing that helped me reset and then the lightning process that finally made me realise I was well but stuck in fear and gave me more tools to get out
      The Nicole Sachs stuff and Gupta helped plus others recovery stories
      I also think getting away from covid and going on holiday helped hugely plus comedy.
      Lastly having a routine every day was huge and knowing I was on a positive trajectory and telling myself that every day
      The breathing helped a lot too

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      1. Also, I worked to Calm Down my mind . I found when I did that there was a delay on symptoms disappearing. The Gupta meditations were the most useful mediations at the time although now I look on insights timer
        The Nicola bird book and podcasts are the best I’ve seen for anxiety xx

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