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Social media takeover with Rose

May 17, 2019

As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Rose - a person with severe M.E. She spent the day posting about isolation, her life and what it really feels like to live with severe M.E.You can find her posts on our Twitter, Facebook and Instagram.

Hi, my name is Rose, and I will be taking over Action for M.E.’s social media for the day. I am in my early forties but feel 202 most of the time! I live alone with my two fur baby cats in a bungalow in a rural village. A typical day for me is bed-bound until around 11am and then my carer arrives. I cannot get up earlier as I am far too ill. People used to say, “Oh Rose does not like mornings!” I love mornings but I am too ill to see them!

I am in my PJ’s for most of the time but getting dressed does make me feel brighter. I am too ill to shower in the day. I feel so ill all the time, but I really try not to focus on how ill I feel… I have gotten so used to it anyway. Having severe M.E. means that I am isolated most of the time. Weekends can be so very difficult, and I welcome my paid help when they arrive. Paid help is a double-edged sword: you are grateful to them, but sad that you need them and have no one else.

Meet my fur babies - Jera is my beautiful black and white feline and her sister Vespie is the naughty Torti-they love being on the windowsill.

Having severe M.E means that I am isolated most of the time. Weekends can be so very difficult, and I welcome my paid help when they arrive. Paid help is a double-edged sword: you are grateful to them, but sad that you need them and have no one else.

Yesterday my carer M chopped up lots of lovely salad for me to munch on and the other day she made me a yummy beef casserole. She loves cooking and I love eating! She does cheer me up. I was very sad and crying as SO worried about my lease being renewed so it helped to talk it over with her and she rubbed my back in comfort.

My other carer A comes on a Wednesday and is also good to talk to and she helped me with talking over my worries. She drove me out in my Mobility car and I sit and rest whilst she gets my shopping. I cannot really go into shops as I am so noise sensitive and so debilitated, so if I need a quick loo break, she wheels me in my pink wheelchair and I cover my ears. I sometimes still cannot believe I cannot walk into a shop but one day I will! I am determined!

When I sit in my car I have to watch my carer go into the shop as I feel panicky with the M.E as I worry how I would get help as I cannot get out of the car. I feel so debilitated. She is only gone for about ten minutes and she stays in contact on her phone. It’s a massive deal for me to do this and I know most would not do so for fear of feeling so unwell but I feel its important to push the M.E boundaries for mental health. My carer only gets my light shopping and its mainly cheeky treats! I’m addicted to Colin Caterpillar 🐛 from M&S!

Living alone with severe M.E. is hard and extremely isolating, during the last 20 years my family and old friends have sadly dispersed because they just did not understand, and I was too ill to invest in them anymore.

I first got ill at 11 years old with an M.E. like illness (contracted after Scarlatina) but I did not become severe until 20 years ago after another flu virus.. so I cannot really remember what it is like to be well but I do hope to improve.

Getting M.E./CFS at such a young age meant I had to postpone my dreams of having my own family. Sometimes, I worry that I'm being unrealistic wanting this when I'm so ill, but I need to hold onto hope. I know having loved ones would help me so much & I have so much love to offer.

Despite the struggles I face, I realise that spending so much time alone has made me stronger. I'm forever told that I'm strong (even when I don't feel it).

If I reflect over the last decade, I can recognise how far I've travelled. I've grown, despite M.E. keeping me stationary.

If you are one of the many people with chronic illnesses living alone, please know that you are not alone. If you are online, you can join me, Rose (‘Fairycats’) and all the lovely friends on our online community for companionship and support.