This is M.E. – ME/CFS/Fibro Awareness Day 2014 – Blog Chain
Considering International ME/CFS/Fibro Awareness Day is fast approaching, Louse Bibby is putting together a blog-chain where we all get a chance to tell the people in our lives a little about how it is to live with ME – PLUS also let them in on a few other things they may not know about us.
It’s in the spirit of other posts where people fill in answers to questions to let others learn a little more about them; in this case it is partly a few questions about our lives in general and partly questions about the experience of living with ME/CFS/Fibro.
This Is M.E
Most of you (my family, friends, Twitter followers, and readers of this blog) know that I have Myalgic Encephalomyelitis (M.E), also known by many other names. The fact that this illness doesn’t even have one name that everyone can agree on, is one of the many frustrating aspects of living with this multi-faceted illness.
As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with ME. Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about ME in my own personal network. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!
What is your name & how long have you had ME?
I’m Allan and I’ve had ME for over 9 years, generally at the mild / moderate end of the spectrum. This means that, though I’m generally not housebound, I am still restricted in the actvities that I can do.
Where do you live? (Country, State, City – however detailed you want)
I have lived in Cardiff, Wales, UK, for over 30 years, but was born in Yorkshire.
Age (if you’re willing to share)
I am 59; I developed ME just before my 50th birthday.
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I am a big fan of The West Wing; I have the complete series on DVD and when I get to the end I go back to the beginning and start again.
2. I have done a bit of amateur dramatics, including being a pantomime Dame several times.
3. I was once part of a winning 5-a-side football team, despite being completely useless at sport of any kind.
4. I had piano lessons as a child, and often wished later that I hadn’t given up.
5. I have been a fan of the X-Men since their first appearance in British comics in the 1960s.
Tell us 5 things about you that the people in your life probably don’t know about your life with ME:
1. I have passed out in two conferences packed with healthcare informatics professionals, on a bus in Brussels, and also in a supermarket and a Chinese restaurant.
2. I sit down to sing hymns and songs in church services, as I can’t stand for too long.
3. I still drink a little alcohol occasionally, but get drunk much more quickly (cheap date!).
4. I bruise more easily than I used to, and it takes longer for bruises / scratches to heal.
5. My brain fog often makes it hard to take in information when I’m reading, yet bizarrely I’m still usually OK at crosswords / sudoku.
What one thing do you think most people wouldn’t know about living with ME that you’d like them to know?
It’s not about “being tired all the time”; there are many symptoms, including severe pain.
What is the most frustrating aspect for you of living with ME?
Not being able to do the things that I used to do, or that I want to do, or that other people want me to do; feeling useless as a consequence.
Anything else you’d like to say before finishing?
ME is a real illness, with a distinctive pattern of symptoms that can be used to identify it. Calling it “Chronic Fatigue Syndrome” is misleading; and treating it as a psychosomatic disorder is not just unhelpful, it can be dangerous.