Lizzy H

In 3weeks I turn 29. I’ve never had a relationship. Never been on holiday with friends. Never finished my education. I have never had a day out on my own. Never been out to work. Never lived away from my family. It’s 13years since I went out on my own. I have #MECFS

Surgery yest, v painful since but was in good hands w my fav consultant as t surgeon, & lvly HCA since . V poorly but relief too. Am safe. LY all x

More from @Bridget_OShea, who died last week, on Substack in 2023. I wish, so much, that those who hamper real research and education about #ME would acknowledge that they are responsible for an ever growing list of deaths from the illness.

For anyone wondering if Severe ME can kill people: yes it can and does. Many will be aware of the cases where pwME have died from malnutrition, but the disease can also lead to *early* death from all causes, with the top 3 being suicide, cardiovascular reasons & cancer ⬇️

I’ve spent 3 years photographing people with #MECFS, a condition I’ve lived with since 1987. 50 people. Invisible & incurable illness. The work shows at Oxo Tower in September. Updates & book info here: tinyurl.com/58khuv8z #InvisibleIllness #PhotographyForChange

I think I'm in double figures now of the people I personally know who have died from ME. All but 1 have been working age women. I bet her death cert doesn't state 'ME' though but cardiac (sudden cardiac arrest also killed half of the other ppl I know). Makes me fume.

If you know someone with ME/CFS or Long Covid -read the blog. Read it for Bridget. -empathize She didn’t give up. She spoke out. We will keep pushing for truth, for care, for change. Rest in peace You wrote beautifully. #MEAwareness #MillionsMissing

‘ME is not a mental disorder. Those of us who live with it mourn every day for our former lives that have been dismantled by this illness. We dream of a cure that can give us our lives back.’ bridgetoshea.com

She was fierce, clever and FURIOUS, with good reason. Her blogs called out the nonsense that passes for care. It called out the decades of systemic neglect I could feel her pain in the words 📖 She asked friends to read about her illness They didn’t…

The subject being? Leaving people for years feeling like they’re dying. Then telling them it’s their fault. Telling them to try harder. Bio-psycho-social Rewarding those who call them hysterical. Ignoring the science. Celebrating the mediocre. She deserved better You all do

RIP @Bridget_OShea ‘think of the time you had flu, think about how it would impact yr life if you felt that way every day for months on end -empathize The smallest morsel of sympathy can make 🌎 of difference for someone suffering misunderstood illness bridgetoshea.substack.com/p/coming-soon

It seems we never even had the chance to pick up the phone for Bridget. I'm so sorry. This world let you down in the most profound way possible. 💙 We will all miss you and we will never forget you. 💙💙💙

All we can do now is help you reach a point of acceptance. Help you dismantle your own internalized ableism and build a new existence in a world that will now turn its back on you just as you turned your back on us.

The only time people pay attention is when it happens to them, and by that point it’s too late. We can’t give you your health back. We can’t transport you back in time to take the advice we gave you to maintain your health. We can’t make it so you won’t deal with discrimination

If you want to be involved in some citizen science, help butterflies, or just have an excuse to sit in the sun for a while, the Big Butterfly Count starts today More info: bigbutterflycount.org @savebutterflies Some of the butterfly species I saw this week in S. England 👇

I’ve had comments that it’s strange to study biodiversity in the UK where “there is none” We have lost many things, but there’s still a treasure trove of species to find. Hoverflies are the perfect example: Look closer and you realise how much diversity there actually is

Has anyone had a gastrostomy and have experience of different types of insertion or different types of tube type? Typically thinking these two in particular, and PEG or RIG… I’m leaning more towards one than the other so I’ll try and go with my instincts, but it’s tricky! Ta x

I feel so much guilt about how much my parents have to care for me at their age. They will soon need care themselves, but they care for me around the clock and their whole lives revolve around me. #SevereChronicIllness