I (Sally) have insomnia (one of my M.E. symptoms) and I have decided to write the latest blog post while Foggy is fast asleep in Foggy HQ.
This blog post is about perhaps one of the most noticeable symptoms for me to deal with. It’s a symptom that other people can actually detect, some days quite easily! Brain Fog.
In the past few months, my brain fog has got worse. Family and friends are noticing more frequently that they have to finish my sentences (surprisingly not annoying – much appreciated!) or remind me of things I have done. Twice in the past week taps have been left running because I have been distracted and forgotten that they were even turned on! Luckily there were other people around to turn them off to avoid a soggy carpet!
Pre-M.E, I was like a human dictionary; spelling was something I excelled at, but now I question simple word spellings and constantly doubt that they are spelt (is it spelt? Or spelled?! ….see???!!!) correctly. Friends used to come to me if they needed help with spelling instead of a dictionary but now…not so much! I even make up words; for example I have been saying ‘lackage’ for months. In the context of….’I have a severe lackage of brain power today’. In my mind it SOUNDS like a word! I even looked it up in a dictionary to see if lackage exists…it does….but not in the same context. I struggle for words all of the time and so maybe it’s not surprising that I have made up my own!
I find the inability to string a sentence together (occasionally) extremely frustrating. I literally freeze like a mouth gaping goldfish while my brain fishes around for the right words to say. One of my current habits is starting a sentence, having to stop because I have lost my thread, I pause (5 seconds), say ‘rewind’ out loud (so whoever I am talking to knows I am not going nuts!) and start again. I tend to start sentences half way through as if I am in such a rush to say the uber exciting thing I am thinking about out loud I miss half of it! If I get distracted and have to come back to the conversation minutes later do you think I can remember what the heck I was talking about?!!!….um…..no chance!
When I am extremely tired I find following conversations difficult; I kind of zone out. My friends can see when I tune out of what they are saying. Apparently I look blank and a bit vacant. I wish I could capture in a photograph what my eyes look like when I am very tired and zoned out as, I’ve been told, sometimes it’s the only indicator and my invisible illness can be seen. I’ve lost count of the amount of times per day I say ‘I’m not sure if I have said this to you already but…’, my short term memory has never been great but has got noticeably worse since having M.E. I can’t remember names, place, dates, events. Diaries, wall charts and calendars are my life savers! I know a lot of non-sufferers say that but if I don’t put it down in some kind of reminder I completely forget. I’ve missed work events, meetings, social events, car MOT’s, tax renewals, vet appointments…I even forget my medication dosage! Memory loss can be a bit of a nightmare when I try to remember which medications I am allergic to! There are now so many I have to have the list written down. I even forgot how old I was a couple of months ago. I had completely lost 5 years! My mum and I had a slightly weird conversation as I/we worked it out!
Learning new stuff can be testing; it does depend on how it is delivered. I can’t do wordy emails or documents. I lose concentration very easily. Perhaps (even though I have an English Literature degree) that is why I haven’t read a book from start to finish for a very long time. I lose concentration after a few pages and completely forget what I have just read! This makes me sad – I used to be a very booky (is that a word?) person; I always had my head in a book pre-M.E. If I have to learn things in a practical way, and actually ‘do’ the thing I am learning, I find it so much easier to remember.
During low moments, I doubt that I have attained a post graduate degree. Who me? I did that? Are you sure?! I have no idea how I found the mental capacity to study at that level…and pass! That is when my M.E. symptoms began; I am very glad that I did not accept the advice to take a break and try again at a later date. I definitely would not be able to study so hard now; I simply don’t have the energy or brain power to write about comparative Russian politics…at length!
I find it very difficult to talk about myself in the third person on social media. Obviously, Foggy only has tiny paws and can’t type ( 😉 ) so I have to do all of his admin work for him. I have been picked up a few times by eagle-eyed Twitter and Facebook followers for speaking in the wrong person. With all of the work I have to do on a daily basis is it really surprising that I slip up occasionally?! When it is hard enough coming up with something to tweet about, then working out how to make it engaging and then thinking about spelling etc…my poor brain gets a bit fried!
(and Foggy OBVIOUSLY)xxxx