English (CC)

Scope End The Awkward Video: • What Not To Do... At A...
In June, I went back to my old secondary school to give a talk to year 12s about living with M.E and being a wheelchair user to raise awareness of chronic illness and disability. This is the recording of that talk!
Instagram: / bexs_life__

[@ValTwineDeaner]

Hi Bex, thank you for a great video. I am 63 and have had M. E. since 2011, and have been unable to work since 2015. I live alone and have no-one doing anything for me. I'm not in a wheelchair, but would love to be so I could go out more. I manage to get out once or twice a week - then afterwards I am I'll in bed or lying on the settee for days after. I have no help and housework frequently gets on top of me. I went to a weekly programme in 2011 for M. E. sufferers, and although it was superb, I always got upset when the tutor told us to delegate housework to others at home - useless for me as I live alone!! I've got no option for home help, and my pals constantly tell me they are tired too, being at work all day!! I have 2 showers a week because it exhausts me. Other days I have a quick wash. I always tell people I often feel like I've run a marathon, have jetlag and been up all night, all rolled into one. My younger sister had breast cancer a few years ago, and went through chemo and other treatment, and thank God survived. She has similar exhaustion to me, every now and again. My family feel sorry for her because of her cancer, they don't show concern for me because they don't think I'm ill. They only see me when I go out with them once every 2 or 3 weeks, and when I'm well enough to go out. I hide how exhausted I am and how I'll I feel etc, otherwise they tell me I'm miserable. I can't win. You're SO right in saying it's invisible to those around us. Take care, and thank you again for being open and very demonstrative and correct in everything you say. Have a lovely week ahead. Xx❤