My memory has been so damaged by Myalgic Encephalomyelitis that I rarely remember anything long enough to gossip about it. I personally experience different forms of memory loss. I don’t remember much of my childhood, I’m not sure which bout of M.E. caused that, I had M.E. in my teenage years too, but I can’t remember much at all. I have a couple of handfuls of vague memories of being at school, family days out, and of a few school friends, but that’s about it. On the odd occasion that I meet old school friends I can’t join in with reminiscing, I simply don’t have any memory of it.

College life and my twenties are also a blur. When people talk about the ‘me’ of 1992-2006 they may as well be talking about a different person. It’s weird, I remember everything about certain people and the adventures we had together but have completely forgotten about other people and life in general. I don’t know what has caused the difference and why my brain chooses to remember some things, and some people, but not others.

Since my second bout of M.E. hit aged 30, my short term memory is dreadful. This is one of the reasons I don’t read books anymore (I also can’t concentrate for long enough periods of time), I might be able to read a chapter in one sitting but won’t remember what I read an hour later. You kinda have to be able to follow the plot and remember what happened! This is proving to be tricky with Stripy Lightbulb CIC and I am heavily reliant on post-it notes and calendar reminders to make sure things get done on time or even done at all. I can’t remember everything that is included in the e-courses so regularly have to go back in and remind myself. Sometimes it’s like looking at something somebody else has created and I find myself thinking ‘ooh that’s good…why hadn’t I thought of that?’…doh. Or, I’ll read an article I wrote for a newspaper for Foggy and, again, don’t remember that I wrote it. Perhaps that’s why I often get taken aback when I get praised for the work I am doing for the M.E. community, I’ve forgotten half of the stuff I’ve done! My lack of memory creates a feeling of detachment from everything I do when I think back on it. Weirdly, I remember everything about the framework and logistics of Foggy. I know everywhere he’s travelled, how much he’s raised, where he is at any given moment, how many Followers he’s got, what social media channels he’s on,  and who his top supporters are (I SEE you). Maybe it’s a different type of memory, who knows. I do have to remember a heck of a lot of stuff every day, maybe it’s to do with memories involved with my daily routine that I remember? A bit like, I remember what my Mum and Dad’s routine is, when we eat dinner, what time their favourite tv shows are on, etc. It tends to be things that are out of the normal that I struggle with.

Away from work, I have had so many lengthy in-depth personal conversations with close friends. You know, the type that ‘healthy’ people would have over copious amounts of wine into the early hours. Friends have confided guilty secrets, personal health news, emotional trauma issues feeling safe in the knowledge that it will not go any further because of our friendship. That’s good to know. I like that my friends trust me with their stuff. They should also feel safe in the knowledge that I have forgotten what they have told me within a month of the conversation! Occasionally, I feel like a bad friend because the same topic will crop up at a later date and I have to confess that I don’t remember the conversation. If roles were reversed perhaps I would feel that the friend didn’t care or didn’t think it was important enough to remember. That is not the case, my faulty brain simply doesn’t allow me to hold on to the memory. I wish I could be more supportive to distressed friends, I am in the moment, but can’t be relied upon in the longer term. I have to keep being reminded of their emotional trauma, which isn’t any good for their mental state either.

I’m going on the radio in the next couple of weeks! My issues with memory loss came to the fore because I was asked to compile a list of my top 15 songs that relate to my life or work (UK – think Desert Island Discs’esque). It struck me that most of my favourite songs are from pre-2006 (when my M.E. hit) when I was living life to the full. Whilst I know every song, word for word, and sing along when I hear it on the radio, inflicting my beautiful angelic singing voice on those fortunate enough to be in the vicinity, I simply couldn’t name my complete list of top 15 songs and artists. I had to Google ‘UK Chart songs of the 2000’s’, or equivalent, to have a brain refresh. As I wrote in an email to the radio station, I found it to be a cathartic experience reliving the pre-M.E. me. The ‘me’ that could stay out dancing until 3am, the ‘me’ that could drink most of my male friends ‘under the table’ (Not something I am overly proud of now I am 42!), the ‘me’ who could sing along to these songs at full volume during very long car journeys. The ‘me’ I am now can’t dance, can’t socialise until the early hours, is intolerant to alcohol, can’t sing full volume due to the energy required and my sensitivity to sound, and I can’t drive long distances now either. Listening to those songs brought back tiny flashes of memories, good times that are now well behind me. The old ‘me’ only used to listen to music in the car or while working behind the bar in a pub/music venue, maybe that’s why I have faded memories of the music I loved, I’m now limited to 20 minute car journeys at low volume or long car trips listening to Classic FM…thanks driver Dad!

One of my ex’s used to have a thing about ‘making memories’ and used to take me here there and everywhere on days out. I had M.E. at the time, goodness knows how I managed it but it was during a period of remission. My remission came to an end around 2 months before the relationship ended and I remember breaking down in the British Museum because I simply couldn’t move anymore and my body wasn’t functioning. Ironically, I can’t remember much of what we got up to during the time we were together, I’m sure he still has great memories of spending good times with a crazy redhead though!

I could work for MI5, not as a spy, but as a kind of counsellor! Tell me stuff of national importance or something that is weighing on your conscience…..I certainly won’t able to blab!


Sally (and Foggy OBVIOUSLY)