This might be the most significant ME Awareness Months yet, you may ask why I think so. In the UK we are on day 42 of staying at home and I think that this might be the closet insight into the world of chronic illness you can get without having it or living with someone who has it. You can’t do what you want to do when you want to. The days seem to merge into one another. However, there is one key difference, I don’t feel as healthy as someone under extreme circumstances. I feel unwell every single hour of every single day.
I spend my time trying to battle managing my illness and keep myself happy. I don’t have a plan to get me out of having to stay at home, I don’t have extra financial assistance to cope with having to shield my way through life. I don’t get to have the comfort normally that everyone else is missing out too. I have the joy of not being seen fully.
I don’t have doctors fighting for me, I fight them for myself. It can be a lonely life and your answers you want are never really revealed. I got Glandular Fever aged thirteen I was ambitious quietly shy but determined. I hadn’t made my mind up what I wanted to be but I loved the beach, baking and fidgeting. I was always on the go, I didn’t relax ever really and I want to see the world. From the Maldives’ pure white sand to the northern lights on the snow-filled background. I want to have children and be an energetic and fully devoted hands-on mother. I wanted to drink cocktails with my Sister and go on a holiday to Greece we half planned but never got to. I grieve for my today, but also for my yesterday and tomorrow. I am but a shadow of myself and it is a constant asking of what the future holds and the genuine ice-cold fear that comes with that. ME took my potential from me and now my new normal is the one I mould to adapt to.
Like everyone in lockdown all I want as a person with a chronic illness is to be included and not forgotten, empathy and respect for my life. You don’t have to understand something to validate it. You might not know my path and what it looks like but you can respect it. If I say something hurts it hurts. If I say prejudice is real and discrimination happens regularly in my life as unpleasant as it is my reality. I started this blog because I wanted to create a window into life with ME that I live. I wanted to write for the people who can’t talk or communicate for themselves. I wanted to give a resource for friends and family members who wanted to try to understand but didn’t want to cause upset by asking questions.
I try to raise awareness but whether that is successful I don’t know. All I can say is Miranda Hart on Instagram has been highlighting living with chronic illness and how similar it is to lockdown and I am so grateful.
I will leave some links at the end of this blog post for further resources.
If you have a few hours to kill and want to know more about specifically ME/CFS then I highly recommend watching Unrest. It is on Netflix and it gives the most visual understanding of what living with ME looks like for some people.
Hopefully, the kindness and empathy our world has gained won’t fade as life gets back to normal when the stillness is replaced with ordinary because I’ll still be here trying life the best life I can within the parameters of ME.
ME/CFS Awareness day is the 12th of may and ME Awareness week is from the 11th of May to the 17th.
Miranda Hart’s videos on chronic illness