I was supposed to record my ‘own radio show’ with a local radio station today; the plan was for me to talk about the 15 songs (chosen by me) that define who I am today and what I do in my working life. I chose the songs a week ago (I won’t spoil the surprise by listing them here). A bit like ‘Desert Island Discs’, I am going to talk about what the song means to me and why it is significant to me. I’m looking forward to doing the recording, as I said in my email to the radio station, it was a cathartic experience and one that made me realise that my music loving brain is stuck in 2006, just before my M.E. hit. If I was going to analyse it I would say that pre-M.E. I mostly used to listen to music whilst working behind the bar in a music venue, whilst driving on long car journeys, or on crazy nights out. None of which I am able to do with M.E. Music brings back so many good memories for me, music meant a lot more to me then than it does now. Possibly because I don’t ‘make memories’ much anymore so current music isn’t necessarily a trigger of a great memory.
Today, I spent time creating mini-note prompts for each song as I know that at 3pm my brain will need a bit of a prod! I had woken up feeling tired (surprise surprise!) but included having a shower in my energy management for today. I got dressed and made myself look presentable, all of which wouldn’t have been necessary if I didn’t have any plans outside of my house today. I have also been saving energy since yesterday lunchtime in preparation for this radio recording.
I have just received an email from the radio station apologising about having to cancel due to technical problems. My session has now been rearranged for next week. It’s all good, I have accepted their apology. It did motivate me to write this blog though, people outside of the M.E. community don’t realise just how much we have to prepare for anything that is out of the ordinary. Part of my preparation included laying in a dimly lit quiet room for the past 2 hours, knowing that without this rest I wouldn’t have been able to communicate effectively. Which would negate the point of doing the radio show in the first place.
Non-M.E. peeps have to understand that we simply can’t do last minute change of plans easily. What might be just a coffee meet-up with friends may have taken us 2 days to prepare for. There is a little bit of me that is a tiny bit resentful, when I think of all the other stuff I could have been doing instead of resting and preparing for this, now cancelled, radio show. This is partly why I am making the most of my energy by writing this blog.
I’m fortunate in that I can occasionally be spontaneous. If someone catches me on a rare day of having energy, I can do spontaneous meals out or ‘pop round for coffee’ but more often than not, my minimalist social life needs to be organised with military precision! Resting is a huge part of the strategic plan involved with keeping me socialised, working, or visible to the outside world.
To be honest, it’s Friday afternoon and within 2 minutes of the cancellation email I had got into slouchy tracksuit bottoms, taken my makeup off and tied my hair back. Normal M.E. functioning has resumed! The radio show has been rearranged for Tuesday. Lots of preparatory rest coming up over the weekend.
Sally (and Foggy OBVIOUSLY)
Don’t forget that Foggy is also raising funds for M.E. research. Please, if you can, donate via mefoggydog.org x