Severe ME – Hear Their Voice

For context, I have been mostly housebound to bedbound since April 2023, but over the past nine months my ME has deteriorated very quickly and Very drastically. I’d say I’m currently cusping very severe and It is literal torture. I haven’t been able to have a shower since January, and even that I shouldn’t have done but I was so desperate to feel clean I pushed through.

 I rely on baby wipes once a month since I don’t have the energy to wipe myself clean more often than that. I haven’t had natural light in my bedroom since February, and the artificial light I have has to be very low red or orange light, most colours beyond these are too bright even on the lowest settings (1% brightness).

I’m now entirely horizontal in bed for 23.5 hours per day except for the 4-5x that I get up to the toilet and that alone uses the majority of my days energy and when I lift my head to help me swallow. I’m currently on a mostly liquid/puree diet since chewing is too exertional, and over the past 9 months I’ve developed dysphagia due to the exertion of swallowing. Which in my worst crashes results in me aspirating on anything I try to swallow including water and even my saliva.

I’ve started to experience episodes of paralysis after overexerting, usually after I try to feed myself or get to the toilet. I spend the majority of my day resting with my eyes closed, an eye mask on and earplugs in with noise cancelling headphones over the top, ideally resting is still as headphones over the top, ideally resting is still as possible. but sometimes I find it just too boring and Cave on listening to an audiobook, which has to be listened to on 0.75x speed since any faster can cause PEM.

If I do listen to an audiobook I still need to have earplugs in since the sound can be too much for me and cause severe pain in my ears. I’ve insufficiently supported since December and so have had my doctors suggest a hospital admission every other month since. But because no hospitals understand severe ME, I’d simply rather risk dying in the comfort of my own home, instead of at the hands of medical professionals who know nothing about my conditions and who are more willing to medically gaslight me than acknowledge the harm that they cause.

No specialist knows what to do with me, they just keep palming me off onto one another and notdoing anything to help, except to suggest I pace myself. My life is already so restricted, I cannot pace myself better without having daily support for numerous hours per day, which I cannot afford without ndis funding. The only medication Ive found to help my very severe sensory overload which is so overwhelmingly painful and distressing to experience that it makes me suicidal multiple days per week, is a restricted medication (Valium). And yet no Doctor will prescribe it to me (After I’ve had to ration the 15 I was recently prescribed), even though they also don’t have any alternative options for me other than to suffer so severely that I want to die.

I can no longer wear most clothing for more than a few hours each day, due to how painful it feels on my skin, and I only really wear them when I’m too cold too warm myself. I’ve managed to see six friends this year, most of whom only stopped in for a short period of time to help provide me some care like administering medications or heating up meals for me. I’m rarely well enough to have a conversation with other people, and it’s left me incredibly isolated and lonely.

 It’s very grief filled to watch everyone you know and love continue their lives as if yours hasn’t completely stopped, disappeared from my life as if I never existed. I also feel like I have very little in common with most people now because of how severely affected I am. I struggle to relate to even people with mild to moderate ME, because there’s so little chance of me being able to get back to that Point now that I am so unwell and still struggling Point now that I am so unwell and still struggling without support. Some days it feels like I’m going to die in this bed, in this dark room. And I know many much stronger pw severe and very severe ME who have been sicker for much longer than I have and have continued to survive, and I think knowing that is some comfort, but it’s also heartbreaking to know that there are so many people in the exact same situation I am around the world.

 I wouldn’t wish this quality of life on the most vile evil person alive, no one should have to suffer this way. We shouldn’t be forced to limit our lives because our government isn’t willing to appropriately fund research, or even acknowledge an ongoing pandemic that is mass disabling many more people with this illness.

It’s hard to have hope when most MPs are pushing for NDIS funding cuts at the detriment to disabled lives, the way they don’t care whether we live or die in the exact same way that many medical professionals would rather think they’re superior than actually treat pwME like human beings who deserve dignity and care.