The Experience of Severe M.E.

Global Advocates 4 Myalgic Encephalomyelitis are honoured to feature Jessica Thompson’s thoughts and experience about Severe M.E.

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I am writing this for Severe M.E Awareness day. Please be aware that this present ability to express this does not reflect the severest experiences of M.E.

M.E is being dead when you're awake and alive when you're asleep. Although when you sleep you may also still be dead. And for many, you are lucky when or if you sleep. Whilst M.E steals your waking and your sleeping dreams; the aching and vertigo and other symptoms continue into sleep dreams. The nightmares of sleep become your reality. You become trapped in a hell just wanting to be woken up.

Severest M.E is being dead but breathing. Nothing exists but you and your breathing in a land of dreams where you struggle to understand the difference between awake and asleep.

M.E is the least supported illness with the most stigma and discrimination. It wouldn't surprise me if M.E was the physiological illness with the highest suicide rate. My friend took her life last year as obviously she didn't get the help she needed after the first two suicide attempts when the hospital staff treated her like rubbish, according to the note she left behind. I wish I knew this before she died instead of after.

I don't know why I assumed she would be ok.

M.E. is where even thought processes can make it more difficult to breath and you are left unable to even pray to God in your own mind. You are literally alone in your own world when you struggle to remember people or their faces and having to protect yourself from sensory stimuli of the world and people around you and even yourself. You cannot visualize, so cannot visualize those you love or happier past times or dreams of a better future.

The land of no colour behind your eyelids, the blinds and curtains. Severe light sensitivity, where tin foil can become your best friend. Noise sensitivity can dig a cold knife through your brain from the sound of your eye lashes brushing against a pillow. Your own breathing is too much and having to make serious decisions whether it is better to leave ear plugs in or out for the noise they create just putting them in. The illness where you become too sick to be able to put your own plugs in or own noise cancelling headphones on. The illness where someone gently brushing their leg against the bed can make your world shake. Another's gentle caress upon your hand is unbearable. The mess around a room is way too much visual stimuli and makes you want to scream.

The illness where you desperately want to cry but are physically incapable of expressing any emotions through any method, from lack of energy. There is no outlet for your emotions to go. The desperation for a release through some form of expression is almost too much to bear, but there is nothing you can do, except keep holding on.

Where remembering a song, a tune, some lyrics is like a rare treasure of gold. It has at times been so beyond amazing to be able to sing inside your own mind when your own voice won't work. It is almost like you are able to sing for real. But to continue makes it harder to breath and you must stop. The ability to physically talk out loud to oneself is amazing.

The emotional torture of the physical torture is a normal reaction to an abnormal situation. It is not an abnormal reaction to a normal situation.

Ignorance is a form of mental abuse, which is how almost all professionals treat us until we eventually might fit their label and fulfill the self fulfilling prophecy that they have set out for us, to justify their unjust treatment towards us.

M.E is being strapped to a torture bed with leather belts all the way up your body, across your ankles, feet, legs, knees, chest, arms, hands head and even the throat can feel somewhat restricted. Any attempt to move causes each strap to become tighter and it can become more difficult to breath. It is where all muscles cease to work for unknown lengths of time when even facial muscles wont work and eyes are held shut. You can't smile to indicate to fear filled family that you are "ok". It is where parts of your vision can be left missing after a conversation, as well as sound, sense of touch and vibrations make you overwhelmed and want to scream and meltdown as the world moves way too fast and wraps you in anxiety of a world that doesn't understand. The fear and reality of the inability to alert others the alarming symptoms you experience, especially the ones caused by themselves and your environment.

It is a world where it is acceptable for the professionals to torture us with abuse. It is the illness where they can get you a D.O.L.S even when you don't need one. And perhaps even your family too. It is the illness where they can make decisions about you without you.

M.E is the illness where I have considered having a DNR in place to ensure that I never have to see abusive medics or hospital staff ever again. It is the illness where almost all health care is denied to us. Any health care is a war to fight. Without the money to afford the physiological evidence of our physiological illness means extreme difficulties in a getting benefits and accessing social care to ensure survival.

Rest in peace to my friend. She did not have the severest form of M.E. yet the sheer lack of support and hope from professionals as well as her everyday struggles and pain was enough for her to leave the world. She had such a beautiful kind heart that was so open to sharing her loving warmth with others.

The photo shows myself on the left and Kathy Counsell on right. We were both at Bristol Millions Missing protest together. It was a massive accomplishment for us both. It was taken a few years ago, before I had my second relapse and became more unwell. My friend is on morphine to be there. She was so brave and passionate about raising awareness and making a difference to a those suffering with M.E.

Rest in peace Kathy Counsell 30/31/1962 - 27/7/2018

And to all others who have lost their lives due to M.E though suicide or non suicide.