M.E., Dysautonomia and Me by Naomi Gilchrist | 01 October 2019

October 1, 2019

Guest blog by Naomi Gilchrist.

I was officially diagnosed with M.E. (Myalgic Encephalopathy) in 2017 but I’d been ill for a while. Then earlier this year I was diagnosed with PoTS (Postural orthostatic Tachycardia Syndrome).

Naomi Gilchrist

Basically, my heart struggles to pump blood around my body so it all sinks to the bottom reducing the amount of blood going to my brain.

This leaves me feeling dizzy, light-headed and prone to passing out. PoTS is diagnosed when a person’s heart rate increases by a minim of 30 beats per minute when they stand up.

Presently, it is not known what causes PoTS or the correlation between M.E. and PoTS. I also have other problems which interlink between my M.E. and dysautonomia.

Dysautonomia is an umbrella term and PoTS and orthostatic intolerance fall under it (basically my body doesn’t like to be upright for too long).

Another name for dysautonomia is autonomic dysfunction; where my body’s automatic functions such as temperature control, blood pressure, breathing, digestion etc. don’t work as well.

For example, when we had the heat wave back in the summer, it made me very poorly, as my body couldn’t cool down. This resulted in my heart going into overdrive and then causing a flare in my M.E.

It’s not uncommon for people with M.E. or CFS (Chronic Fatigue Syndrome) to also have problems with autonomic dysfunction.

A lot of my autonomic dysfunction plays into my M.E. symptoms. I find being laid down a lot easier and more comfortable, plus it eases my M.E., as well as my PoTS symptoms.

Because my body has to work harder to do basic automatic functions, it exacerbates my M.E. I get tired a lot more easily and my headaches and migraines are worse, and I also have problems with my digestive system.

My life with PoTs

I spend most of my day laid down and this eases symptoms such as tachycardia (fast heart rate), my blood pressure is better, I’m less dizzy and my orthostatic headaches are eased.

I can be stood upright supported for short periods of time, such as the time it takes to make myself a cup of coffee, but that’s about it. Even doing just this leaves me dizzy, breathless and exhausted.

“I struggle to sit myself up so being able to do this electronically has made a massive difference to my life.”

I’ve lost count how many times I’ve passed out. I have to do things a lot slower and everything takes effort; sometimes I feel as though I’ve run a marathon.

For example, to stand up I have to go from laying to sitting up and then let my body adjust; I then pump my legs to get the blood flowing better and then I have to slowly stand. But it’s still a game of risk: will I or won’t I pass out?

My mornings are taken very slowly too. My PoTS is generally better then because I’ve been laid flat all night.

One of the most useful pieces of equipment my occupational therapist has provided me with is a mattress elevator. I struggle to sit myself up so being able to do this electronically has made a massive difference to my life.

In the mornings when I wake up, I spend a while laid there, getting myself awake enough to get out of bed. I then slowly elevate myself up bit by bit until I am sat upright.

I wait until the dizziness passes and my racing heart calms down, and my blood pressure adjusts. Then it’s time for the usual pumping of my legs and stretches before standing up. Again, during this process I am prone to passing out.

The stairs have become too difficult and dangerous to manage so I go up and down them by bum-shuffling. I then take the few steps to the sofa where I have to lay and rest just from getting out of bed and down the stairs as I find this process exhausting.

Because my M.E. fluctuates so much, some days this process is easier than others. Some days it’s not possible at all.

This is the reality of living with M.E. and PoTS that people don’t see – the not so simple effort of getting out of bed and down the stairs.

Hidden disability

And that's what’s also hard about M.E. and PoTS: how invisible it all is.

You can’t see what’s going on inside me and because my body has to work harder to function it worsens my level of fatigue. 

I try and take minimal trips from the safety of the sofa during the day. I use the term ‘sofa-bound’: when moving round the house is too difficult. The statistics are that 1 in 4 people with M.E. are house, sofa or bed bound at any one time.

I find when I’m going through a bad day or a ‘crash’ (a term used in the M.E. community when a person’s M.E. is worse than usual) that my dysautonomia and PoTS are worse too.

Even just sitting up in bed leaves me very dizzy, with a racing heart, feeling lightheaded and prone to passing out, and unable to stand.

Just like with my M.E. diagnosis, when I got my diagnosis of PoTS and dysautonomia I was given no further support.

I was left to manage this on my own. I’ve tried to get support from my GP but the feedback I receive is that it’s too specialised for them.

I did learn some self-management from a hypermobility session I went to (another medical problem I have that also leaves me prone to developing dysautonomia and PoTS).

Other than that, I’ve had to learn how to manage things myself. Apart from concluding that my dysautonomia and PoTS are common secondary symptom to my other illnesses, I have no idea why I developed them.

My experience has shown me that more research is needed, and better support and management needs to be given to patients.

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