Myalgic Encephalomyelitis - Blog Posts

As a British person living with severe M.E., (plus fibromyalgia and some other issues), I would ask that you please sign and share this petition to get Royal Devon and Exeter NHS Foundation Trust to make accommodations for Alice Barrett, who has very severe M.E. and P.O.T.S. and is currently being treated in Exeter Hospital.

They are refusing to feed her via a nasogastric tube in such a way that takes into account her specific needs - and despite an M.E. specialist saying it's safe to do so - because it isn't in accordance with their hospital guidelines.

Alice needs help, so that she can be fed in a way that won't compromise her health, and potentially permanently worsen her symptoms.

Please sign and share this petition!

Petition · Save Alice Barrett's Life · Change.org

Edit: I paid to blaze this post, so it would reach as many people as possible, but sadly, the Tumblr moderators have rejected this, so this post is not sponsored as I intended - I don't know why. If Alice's family and friends see this post, please know that I tried! 🤷🏻‍♀️

🐦‍⬛On chronic illness and existential dread (not edited)🪺

I hope this year I will do more things. Choose to do more things I want to do instead of being afraid. This year I might have the privilege of spending the small amount of energy I have towards things I wish I would have already experienced. But this fears, oh, this fears.. their claws hold me tightly. They whisper „it’s not the right thing, you only have so little, don’t give it away for the perfect or the most important thing“… and I end up not using the small amount of energy. Like a fool. Like a naive, hopeless fool.

I wish I could save energy in a way, that I can stay curled up for days be then have a big eventful trip or just a day where I don’t need to „look at the watch“ (the energy-meter, if you will). But every time I go to sleep, I wake up with a feeling of regret. Every time I go to sleep, I am afraid of the next day. And I long for it, desperately, because maybe, just maybe, it will be the day when I finally move the claws away and am allowed to live?

Scared to disappoint myself, scared of what I have already lost, of the time that already passed. And longing for a fresh day, a fresh start, a fresh chance, just one more chance, I will not fuck it up! And then I do. But I am so tired of myself… it’s not a choice I keep telling myself, because 99% isn’t a choice, but this 1% is so painful. To see my Trauma and fears guide me instead of my knowledge and my hope. Good thing, that hope is patient. But am I? I have to be.

I shall walk when I can, cook when I can and laugh when I can. I shall experience what’s there to experience, no matter how small it seems to be in comparison to others, to those, who don’t live my life. To those, who, (for now?) are healthy. Or can afford the Great Denial. I shall write, I shall paint, I shall sing, as long as it’s possible. I shall get up early when I can and go to sleep early, because my body needs it. I shall be kind to my body, because it’s suffering from the same illness I do. Because it feels, like we aren’t the same, like there is me and there is my body. And there is the tiny child who wants to play, and the most scared adult, who is afraid to move at all, because what if violence will return?

But it will not. I deserve to live what’s there. And next time maybe I will have more.

I deserve to experience the beautiful simple things, because they are what makes life worth living.

I feel like this about the doctors responsible for caring for each party too. Managing your own care is exhausting af.

my body is a group project and no one is doing their part correctly

It's ME awareness day and next week is ME awareness week, so here's a post about ME that you may find interesting or helpful!

I have ME it's one of my diagnoses, and I struggle with it on the daily! I wish more people understood how my body works and feels but sometimes the best I can do is a post like this

Anyway enjoy!

ID in Alt