I got Long COVID before it was a thing

 

I wanted to take my kids to the movies today but my physical and cognitive fatigue took over. I had taken my florinef for increasing salt retention and to raise my blood pressure. I had taken my midodrine to increase vasoconstriction ( which prevents fainting and reduces my dizziness and seeing stars). I had taken my nasonex to stop my random allergic reactions to…well…. everything. I had taken a stimulant for cognitive fatigue, my second for the day.

I had drunk about a litre of electrolytes to try and raise my blood pressure as well as heavily salting my lunch. My blood pressure was finally in the normal range but I still felt too sleepy. So I drank a coffee and still could have gone straight to sleep afterwards. My hands felt weak and my concentration was shot for anything serious like driving. I felt angry and defeated. Why can’t I just drive my kids to the movies like a normal mum?

I have a condition called POTS*. It's an autonomic nervous system disorder which affects my heart rate, blood pressure, breathing, digestion and regulation of adrenaline and cortisol. My heart can be pounding like I’m swimming when I’m merely folding towels ( my Fitbit regularly thinks I go swimming) It also affects my body’s ability to constrict my blood vessels, which leaves me feeling floppy, weak and sleepy, even after an 8 hour sleep.

WAIT, What does POTS have to do with Long COVID?

Some people with POTS appear to develop symptoms after a viral infection. I’m not sure what triggered mine, as it happened when I had two pre-schoolers at home in 2012. I caught a lot of viruses that year, but it also seems to be affected by hormonal changes in my body. I had recently given birth and the changes in blood volume could also have been a trigger. At first I chalked the tiredness up to broken sleep and parenting 2 kids. But later on, when I was sleeping 8 hours a night, I still needed a 2 hour nap a day or I was cantankerous.

I had adrenaline surges which I thought were panic attacks. I assumed I had postnatal depression and signed up for my 10 mental health sessions. My Psychologist was helpful but didn’t address the physiological triggers, because, you know, why would she? For the next year I did mindfulness 2-3 times a day when I could squeeze it in. Still I could tell when I wasn’t safe to drive and spent many days at home, or tried to do things I could walk to with kids in the pram. My brain just couldn’t focus on tasks and I could become sensitive to noise or light which made it hard to concentrate, navigate parking or drive calmly when kids were crying or having a tantrum.

How did I get Diagnosed?

Later, when trying to attempt to do “normal” things again like singing, drive more frequently and work, I ended up with chronic neck, shoulder and throat pain. I had speech pathology to try and address my throat pain and saw an ENT who also noticed I had TMJ ( jaw pain) for which I saw another specialist physio. I also saw a specialist physio for tailbone pain for sitting while resting. It felt like my whole body was falling apart. I was exercising regularly, but my recovery seemed to take so much longer. If I stretched a sore muscle, it got worse, not better. I did weekly clinical pilates classes, saw three specialist physios and wasn't making any progress in fitness or pain reduction.

My TMJ physio was very goal oriented and asked me to set myself goals for our sessions. I started to make a list. It was then that I realised that my quality of life was very low. I dreaded travel, seeing friends, eating ( for the postprandial fatigue) and many other activities. I couldn’t sing or exercise without pain. 

By this time, I had some inkling that I might have a condition that explained all my symptoms rather than a bunch of disconnected problems. I went to a local cardiologist who, although I passed the test for POTS in an in-office test ( HR going up by 30 beats pm in short period of time when rising from lying to standing) told me I was too young for medication ( I was 39) and to drink less coffee and eat more salt. Another doctor told me I was too old to be diagnosed with POTS. Finally I found a specialist who had a clear diagnostic protocol of a heart rate monitor and BP monitor worn for several days and nights. He diagnosed me with POTS based on my data and started my medication regime.

Wait, so what does this have to do with Long COVID again?  

I’m telling you about my POTS because some people with Long COVID have POTS like symptoms. Some of the long COVID research is being done by researchers who are familiar with POTS. There is a lot to find, here are a few ( Here, and Here for example, a search of Long COVID AND POTS in Pubmed ought to do it). 

I get how scary it is to realise that the body you once relied upon can no longer pull an all-nighter, run 10kms, or at times even drive the same distance to take your kids to the movies. I’ve had very strong reactions to the flu when I get it, I definitely get more dehydrated and can end up in bed longer than the rest of my family. I definitely don’t make a long list of things to do on holidays and it’s painful when people don’t believe I am truly sick because I “seem ok”.

I’m advocating for myself because I have a real illness that is mostly invisible. However, I’m not scared of catching SARS-COV-2, or developing a severe infection or complications. I’m not misinformed, stupid, or putting my head in the sand. I’m tired of being scared of getting sick and I’m tired of the effects of lockdown and isolation on my body.

If I'm already sick why don't I isolate?

Despite having limitations and pain I’m in much better shape when I socialise, exercise and have mental freedom to work and get out and about if I’m up to it. I may do these things with less frequency than others and I may need longer to recover after a day at the beach, a dinner with friends, or even working outside of the home. I do lie down every day, but I don’t fear getting sick, there’s really no point. All I can do is rely on my vaccinations ( and booster when it's time), masking, hydration, medication and deep-breathing.

What can we do about Post Viral Malaise? 

Instead of panicking about the spread of Omicron, it's an opportunity to finally invest in our health system and listen to people when they say they have ongoing fatigue from exposure to a viral illness ( not just SARS-COV-2!)We need better protocols for treating people with ongoing chronic conditions, whether in ED or primary care. We need understanding workplaces and acknowledgement that our symptoms exist. We need more physicians who can understand that these conditions often affect multiple body systems.

So many of us have gone to a neurologist or cardiologist and been written off because they have not been educated in how to treat ME, POTS or other conditions. We have been told it’s all in our head and to stick with Physio and psychology or even told to just ‘go for a run’. We've presented at ED knowing that IV fluids could get us back on our feet only to be told we are "malingering".

As a person with a chronic condition, shouldn’t I be triple-masking, demanding a fourth shot of vaccine and ordering family to isolate away from me? I could catch SARS-COV-2 next month from my kids when they go back to school, but I’m willing to take that risk, trusting in my vaccination and immune system ( busted as it is). I’ve spent enough time at home and I know I will end up there again, keen to enjoy what I can while I can.

 

* POTS stands for Postural Orthostatic Tachycardia Syndrome, to learn more, go to Dysautonomia International http://www.dysautonomiainternational.org/page.php?ID=30