Bed for Severe ME

M.E. has taken so much from me, but I am sharing some Bed For Severe ME photos hope that we can gain the support, care, and understanding we desperately need. Pjs And Protocol

I normally talk about Myalgic Encephalomyelitis.

In abstract. Talking about my own life and suffering is so much harder. 

Hard to know how my friend and family feel powerless and heartbroken when I explain that my chronic migraine neuropathic pain joint pain flu like symptoms, sensory sensitivities and more leave me in constant chronic pain. 

That I never feel rested and that my every word and movement is as though it is struggling to break through quicksand. 

That my energetic and enthusiastic conversations or hyper-focused advocacy work are fueled not by any new energy but by adrenaline surges that leave me in utter misery and paralysis afterwards. Yet these exertions are the only time I feel for a little bit close to normal. 

Severe ME now close to or perhaps already very Severe ME has taken so much from me. It is slowly taking my last outlet of advocacy. When it does it will finally have killed me. 

I am lucky. Lucky that I can survive this illness for far longer than most as I can access private healthcare, home nursing and more. But I have seen where this train ends and I reject the end of the line. 

Every day I feel pain, frustration, and anger at this horrific disease. Yet every day I feel gratitude and relief st the things I have left. Eating my own (specially prepared low histamine) food. Holding my husband close. Talking to my dad and friend. 

Life is a gift. Severe ME takes that gift away logarithmically increasing death until it is so close and yet still not close enough for relief. 

This living Death is a slow and stifling one. Like treading water white weights are slowly added to your ankles. Slipping beneath the waves again and again always struggling for that one last breath. 

I want to catch my breath. I want to remember what it feels like to float effortlessly in the water. Or lie basking on a beach. But I cannot. You fight or you drown. 

Severe ME advocacy often feels like shouting into a void only you cannot shout you can barely whisper. 

Please hear us.