My life turned around when I came down with Long Covid as a late twenties up and coming finance employee. Long Covid came out of nowhere. I was fit and healthy and had very little disposition to becoming so ill. I’m here to share my story in this Long Covid blog.
Getting ill
I was back from holidays and was under hybrid working conditions. This included attending the office a couple of times a week. I came down with a virus that felt like a bad flu. It took about a week to recover and then I was back to working from home. I simply never recovered from my initial covid infection. This qualified me for a diagnosis of Long Covid.
Learning to live with Long Covid
Early in the pandemic there was very little information about Long Covid online. My General Practitioner advised me simply to “rest”. I was fit and active so I thought rest meant refraining from exercise. I couldn’t have been more wrong.
Initially I was able to work while I had Long Covid. I shrunk down my social life, family life, exercise and hobbies to fit my lifestyle into my energy envelope.
I tried exercising which was a highly recommended treatment for Long Covid. Authoritative sources such as the World Health Organisation and the government advocated this approach. There was a small warning to avoid this if you suffered from Post Exertional Malaise (PEM). This applied to me but there were no other low risk treatments available to me. I was able to complete an exercise program for around six months. I continued to experience regular “crashes” with bouts of flu-like fatigue and had to take bed rest for a few days. As the months dragged on I experienced worsening gastrointestinal symptoms.
A worsening condition
After experiencing another crash I was keen to get back to life so I attended an exercise session. I immediately crashed again and this time I didn’t get better. I was contained to my bed except for getting food and going to the bathroom. Once I called family to care for me it became evident I was not able to prepare my own food. I also had terrible headaches, my body felt heavy and I experienced depression.
Stabilising at a new baseline
I had recently received a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). This is a type of dysautonomia. The autonomic nervous system regulates many of the unconscious processes in the body. You may be familiar with concepts of “fight or flight” i.e. sympathetic dominance and “rest and digest” i.e. parasympathetic dominance. With POTS your body gets stuck in “fight or flight” mode. Upon standing your body does not raise your blood pressure and reduce your heart rate as expected. Instead you experience insufficient blood flow and may feel brain fog, light-headedness or dizziness.
After a short time I was able to access medications to address Long Covid and POTS. These were successful in stabilising my condition. However I entered a new baseline of severe Long Covid. This means I am unable to leave the bed except to go to the bathroom. I also had to give up my full time job and any remaining hobbies or socialising.
Today
Now I am still a severe Long Covid patient. This is my disability. I dedicate the majority of my time to resting and finding ways to medicate and treat my Long Covid. I have also picked up the diagnoses of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Mast Cell Activation Syndrome (MCAS). Through extensive changes to my daily routine, medications, supplements and diet, and with the help of many professionals, I have experienced a small improvement in my symptoms. I am now able to do a small amount of computer work such as running this Long Covid blog. My doctors still assess me as medically unable to work.
The future
The current prognosis is not great. I am still very optimistic for where Long Covid research may go in future. I am following many favourite researchers such as Nancy Klimas, Rob Wust and Lucinda Bateman just to name a few. Long Covid is said to be the fastest ever researched disease. For us patients this is still not fast enough. Especially for our ME/CFS friends who feel left behind. I’ll continue this Long Covid blog for all of us.
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