A cardinal symptom of M.E. is “brain fog”, but it’s also common in other diseases like EDS and MCAD. Before my drug allergies kicked in I’ve been sedated (using valium/diazepam) for various medical procedures and that’s just how brain fog feels to me – like it’s 4am and someone has just woken me from a very, very deep sleep. I’m groggy, dizzy, disorientated, confused, seeing coloured stars and can’t think clearly. Only I have to live every waking moment like that.
On top of the sleepy fuzzy dizzy grogginess I also have problems with short-term memory, information processing and my problem solving skills have done a bunk.
Yesterday was a classic “brain fog” day for me. I stood in the kitchen to make breakfast and it took me several minutes to remember why I was there and what I usually eat (toast, every morning for 2 years!). I had to go into town and got chatting to a shop assistant who we discovered used to live in my village. We were discussing our mutual acquaintances and she asked me what my cousin was called. Could I remember? That would be a big fat no. On Tuesdays and Fridays I have some yeast-free bread put aside in a local deli. So I went to collect it. The assistant looked at me like I was nuts and said “er, did you ask for bread to be put aside today?” Me: “why, what day is it?” Assistant: “Wednesday”. Me: “That would be a no then” 😉
My short-term memory problems probably cause me the most hassle. My mobile alarm pings several times a day to tell me to do stuff: put the bins out, book my Tesco shopping, collect my bread (!), water the houseplants…… Without it nothing would get done.
Blogging is a huge challenge. I’m effectively writing these posts with a brain injury, so when readers pick me up on little things like I haven’t included this or that, or I haven’t expressed myself particularly well, it really does rankle cos I’m doing my best. I’m simply not clear headed enough to read the post back several times to make sure nothing I’ve said could be mis-construed and I dno’t have the energy to worry about whether my humour is translating well in 180 other countries, whether I’ve been tactful enough or whether I’ve included every single piece of relevant information (it’s a blog, not Wikipedia). Thank God for spellchecker. Since I went down with M.E. I have developed some kind of dyslexia. I write letters back to front, can’t spell for toffee and often miss entire words out. One of these days I’m going to publish a blog post without spell checking it and you’ll be able to see just how terrible my writing really is!
Pre-illness my brain was sharp as a tack and I miss it. I miss being able to have indepth conversations about politics or the state of the economy. I miss having a solution for any problem I was presented with. I miss being able to spell. I miss being able to express my thoughts well. I miss my memory. I miss seeing the world clearly. I miss being awake.
Over the years I’ve adapted to many aspects of my illnesses and forget now what being healthy was like, but I’ve never adapted to my brain fog. I can still remember what it’s like to have a clear head, even though it’s been 21 years since I had a clear head for any second of any day, and I still miss it. I always will.