It is ME awareness day and I am a sufferer of this illness so I wanted to make a post about it and why we need more awareness and more funding. There is so little known about this illness even now, and it is often thought of as laziness or in our heads just like back in the day when it was known as hysteria. So lets have a chat about ME/CFS frustrations and that it is so much more than being tired.
Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are a functional disorder that we still do not know much about. Years of assumptions from the medical community, and low funding mean that there had not been much scientific study into the illness. This means there is little that can be done to help someone who is suffering with an illness that is so much more than just feeling tired and needing a nap.
I have often spoken on this blog about my personal experiences with this illness, usually framed around frustrations and being unable to do what I want to do. I often find people, including my mom who I live with, assume that I have had a bad nights sleep and that is why I have at least once a week where I am forced to be in bed resting. This assumption that the overwhelming fatigue is because of something we have done is probably the most frustrating of all.
My life has to be planned and rest time accounted for or I can not get anything done, I find my days full when all I have done is get out of bed, shower and make dinner, maybe a little time online or reading a book. The levels of fatigue do not tally up with the things I do and yet I have to work around it. The videos missed on my YouTube channel, time with friends, dates with my husband, being able to have a job and a million other things missed because of this illness make ME/CFS frustrations the worst.
I have goals, dreams and desires, everyone with this illness does, along with all of the people who developed Long Covid who are now realising it might be ME/CFS. We are missing because we want things, but being unable to do them because of extreme fatigue, brain fog, memory issues and other symptoms and then being disbelieved? It feels like a personal attack and it comes every time we have to fill in forms to try and get disability or explain why we cannot go out with friends.
I hope you will do your research before assuming you know how we feel, you might have hated being locked away alone at home for a year during the pandemic. But for those of us with ME/CFS it will not come to an end, I will still spend most of my days at home unable to leave just like so many of us. ME/CFS frustrations come every day, but if you have read this I hope it will change how you see me and the millions missing with this illness.