May is #MEawareness month.
ME is a neurological disease which affects every part of the body – cognitive, cardiovascular, respiratory, gastrointestinal. It is not ‘CFS’.
We need more awareness of this illness as, if sufferers are told by medical professionals/family/friends to push through their symptoms in the early days, they can end up EXTREMELY sick – this is exactly what happened to me.
I began experiencing symptoms in 2015; my symptoms were brushed off & I was advised by professionals to ‘continue exercising’. In the space of 1yr I went from being able to walk around the house, help with housework, & spend hours walking outside the house EVERY DAY – to being 95% housebound, not being able to be around any light, having seizures, & not being able to walk without extreme cardiac symptoms.
Over the past few years it has been a steep learning curve. I’ve been bullied, belittled & ignored by the NHS, so have had to work out for myself what makes me worse. I’m 90% bedbound, struggle severely with cognitive issues, have 24/7 pain, & have severe orthostatic intolerance – sitting up leaves me unable to think & having seizures; standing results in my heart rate increasing by 50-100+bpm. I have periods where parts of my body become paralyzed; I lose my taste for days at a time; my brain is fuddled & I talk absolute nonsense.
I battle intense symptoms 24/7, but these are much worse following activity. I’m unable to bathe alone, cook, clean, do much of anything. I’m very much still grieving for the life I had, & still getting used to a life of so little.
I understand I must not push myself. Overdoing it will result in my condition deteriorating, & if this continues, my ME could end up fatal. This is terrifying.
I’ve lost so much to ME. My health, my life, my hobbies – integral parts of who I am, what makes me me! I’m unable to do anything for myself. My partner has to do everything. I experience abuse & stigma from every dr I see; myself & partner are dealing with this terrifying ordeal entirely alone, & it’s awful.
ME is much more than feeling tired. It’s not a joke, it’s not a mental illness, it’s not laziness. GET could kill us & CBT will do nothing for our physical symptoms.
We need more awareness & better (ANY!) education for medical professionals 🙄
The book in these photos is “Caring for an ME patient” by Jodi Bassett, who had severe ME & sadly passed because of it. It is an amazing book & I highly recommend it.