Calm Down? Are you kidding me...

When a Severe ME Patient is told to 'Calm Down' it is one of the most patronising, insulting, infuriating things that can ever be said to us. Here we are, laying in a darkened room, unable to walk, talk or sit with little hope of a specialist Medic arriving to tend to us as other patients of chronic illnesses rightly expect.  Nope, we are basically left to rot, and then someone comes along and tells us to 'Calm Down'. Well...

But, here's the thing: somehow we have to find a way to do just that. Until we get the medical help, support and treatments we so desperately deserve and need, this is our best chance to give our body and brain any chance of rebuilding.

And, believe me, I've been there and frankly, although I was a little more than a breathing corpse at my most severe, all I wanted to do to Professor Findley's Occupational Therepist who kept telling me to try to 'Calm Down & Rest' was punch her. 

I mean, I was in bed 24/7 so I was already resting, right? Wrong.  

I was in bed 24/7 yes, but my brain was either whirring and racing constantly trying to figure a way out of this living hell, or my brain was in a deep deep coma like fog brought on by the constant whirring.  

So, I heard the OT out and along the way began to learn what True Rest actually meant, how True Rest periods were perhaps my best chance of improvement and to this day, I firmly believe this was one of the most important lessons I had to learn.    

Neurologically, Severe ME makes Patients kind of get ‘stuck’ in the stressful ‘fight or flight’ state almost permanently which severely affects all our primary body systems: breathing, muscles/joints, blood circulation, special senses, digestion, whilst our brains are working overtime constantly in a problem-solving manner – utterly and completely exhausting.  So, it is vital to improvement that Patients find a way of calming down their Sympathetic Nervous System.

When I use the term ‘Rest’ in relation to treatments for Severe ME, it really means ‘Deep Relaxation’.  And I learnt that a period of Deep Relaxation, true rest, is a period when the Patient quietens the brain and the body....not easy at all when your Sympathetic Nervous System is stuck in fight and flight mode, but key to improvement and giving your body/brain any chance of self correcting.   

Indeed, when I was at my most Severe, bed-bound, light sensitive, in constant pain, sleeping perhaps 3-4 hours a night if I was lucky, unable to do anything for myself, lying in my bed awake, anxious, and terrified at what was happening to me for 20 hours a day was anything but restful……….but when I was taught by Professor Findley’s CFS/ME team how to switch off my racing brain and calm down my Sympathetic Nervous System, well, it was nothing short of amazing.  

So, what was I taught: 3 ways to switch off both physically and mentally.

1. Breathing Exercises

2. Listening to soft instrumental relaxation music

3. Following a guided relaxation. 

I also learnt to treat these Rest Periods as if they were prescribed medication.  If I needed to do a 30 minute Rest Period 7 times per day, that's what I did.  And it worked.  And the most effective form of guided relaxation for me, was Autogenic Relaxation, which I will cover in my next post.