Hi,
I have always had a reputation for being a chatterbox. I have wiled away many driving hours chatting away to my passengers about complete irrelevant random-ness just to pass the time. That stopped when M.E. hit. I’m going to use this blog post to explain how much energy is required to use the power of speech.
I LOVE Car Karaoke. Singing in the car, on my own, used to be one of my favourite things. It was the only time that I could sing full belt without criticism…I am tone deaf and sing like a wounded cat. Singing along to vintage CD’s use to be one of life’s small pleasures. However, I now have to make a conscious decision to save energy and keep my mouth zipped shut. Driving uses a lot of cognitive energy to concentrate, make decisions and be alert. So, I have to cut down on any addition energy usage to make sure I get from A to B safely. I have just driven home from a weekend away and had to reserve energy on the drive home. So, while Texas, Snow Patrol and The Verve were wafting out of my car speakers I had to virtually bite my lip to stop myself from squawking (singing) along. I couldn’t quite stop myself from singing along in my head, though; even that uses brain energy…why oh why do I know ALL of the words?!
When I was first diagnosed with M.E, my support worker explained the different types of energy that
the body uses every day. Cognitive is just one of them. So, when M.E. sufferers say they have run out of energy they don’t just mean physical energy. It means their brain has run out of petrol too. This affects speech, memory, concentration and causes brain fog. To do the act of speaking (or singing) you need to use your brain to work out what you are going to say, how you are going to communicate internal thoughts, as well as physical energy to make your facial/mouth muscles work.
Family and friends can always tell when my symptoms have worsened because I go quiet. When I do speak my speech may be slurred because my tired facial muscles just don’t want to work properly or what I say doesn’t make any blooming sense! I get particularly frustrated when I can’t get my words out properly, this frustration makes my speech even slower and this is usually when people have to fill in my sentences for me. I get exceptionally breathy, I am not a biology wizard (Click the link for info on speech mechanics) but assume it is because tired throat muscles aren’t operating as they should and affect my voice box. I get a bad sore throat at the same time and swollen glands also affect the sound of my voice.
Being a chatterbox was part of my personality and it does make me sad that a part of me has been taken away. It is very difficult to communicate a bubbly outgoing personality silently. For now, my friends and family should be thanking M.E for giving their ears a rest!
Love
Sally xx
(and Foggy OBVIOUSLY)
Great blog Sally. I know this feeling all too well. Not that I am a singer by any means, but I do like to talk ( a lot) when my eldest daughter visits. So much to catch up on etc. As you know you can't fool your body! So it just shuts down, in comes sore throat, sore glands and …..no voice!! So frustrating. This can last for days. ME is so restricting, but I always say(when I have a voice!) 'What's bad, could be worse.
Thanks for this very honest and informative post Sally. I could never understand why I became thoroughly exhausted from even short conversations, why I began slurring, or unable to find words at all. Thank you for using your limited energy to help all of us through this 2nd fundraiser!