Severe M.E. Awareness day: Thunder clashes in my brain

Severe M.E. is truly a living horror (or as many describe it, a living death because of the severity
of suffering it causes). One that truly no one else can imagine. I will say it again, a picture can't show what severe ME is, a video can't, seeing it every day as a family member can't. It truly is impossible to imagine the severity. 

ME is a severe illness at all severities but mild ME didn’t remotely prepare me for how bad it has got at times, nor has that truly made me aware of what its likes for people so much worse than me. So please take the time and listen to peoples words. Please understand the amount of energy and time it takes for people with Severe ME to try and write and educate, and also how many are unable to despite how desperately they want to. 

Severe ME can smother every light of a persons being. It suffocates it and can trap someones personality inside. I am not the girl I was. With lack of energy comes lack of ability to express it. You think of the obvious things, I can't go out, ride horses or play hockey, but I also can't sing along badly to music. I can't spend too much energy laughing. 

ME is a very poorly recognised illness at any level of severity but even more so for those severe. Doctors will see very few severe ME patients in their career, maybe only one and they will often not recognise it. About 25% of ME patients are severe, although that has a huge range in severity itself. 

Severe ME day is on the 8th of August, the birthday of Sophia Miraza who died of ME. It is to raise awareness of those suffering with it and remember the many we’ve lost. 

Here is a poem I've written about Severe ME (which next month I’ll have had for 3 years):

Thunder clashes in my brain, 

There's a storm at sea in me, 

It goes by the name of Severe M.E.

Crash. The first wave hits,

Its the exhaustion,

A word that pales in comparison. 

My bed has become quicksand,

As my limbs move, it seeps over my body, Gripping me and holding me hostage. 

Pain consumes my being,

Every type you can think of somewhere in my body,

It's a hammer, a knife, a deep ache and a throb. 

PEM creeps up to attack from behind,

I dared to do too much,

Now I will suffer an unknown time. 

My head pounds,

Squeezed like a vice,

My brain rattles inside. 

My thoughts float around in endless despair,

Stuck in time,

I’m confused, but all too aware. 

Light pierces my eyes,

Sound echoes around my head,

Scent suffocates me.

I'm trapped in the bars of this cruel disease,

Where restrictions are so tight,

I have so little energy to try to win this fight. 

Drowning underwater,

The gasps for breath,

I long for one where I'm free,

Yet the torrent continues,

Every symptom hits like a wall,

I can't continue anymore,

I ache to fade away,

Shut my eyes,

For a better life, I pray.

The lights go out,

For me, that's a relief at last,

My body can attempt to recover,

As even my nightmares are an escape,

I will walk pain-free,

Monsters lurk but not the one called ME.

Yet I wake up the same,

Do it all over again the next day,

A cycle I can't break out of because,

Thunder clashes in my brain,

There's a storm at sea in me,

It goes by the name of Severe M.E.