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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 tested positive for 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.
A cycle of crashes
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.
Each time the crashes were worse and the periods of feeling ok were shorter
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.
Pacing and Spoon theory
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.
I was so low I didn’t know how I could carry on
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 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.
The bright side
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’m conscious of living a slower more compassionate life
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 trained to be an NLP trainer and had done quite a bit about the mind body connection anyway and know it to be significant. However, I’ve never made money out of it. I run training courses for leaders in organisations. I use some of the principles of NLP in this but nothing to do with long covid or ME /CFS etc).
The game changer
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.
My brain would then interpret these, get more anxious, generate more symptoms, and enter a vicious cycle and then I would crash
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.
I was able to talk myself down as I now knew what it was
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.
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.
I learnt to influence these symptoms and make the changes I needed to feel as amazing as I do now
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.
This story was first published on Rachel’s blog.