My MEcfs Brain doesn’t always cope well with questions, waiting, planning, changes and life in general. Does my brain function in a different way to other ME sufferers grey matter? I really don’t know. But at times it can seem like a comedy double act! [1700 words approx].
I have to use all manner of reminders and prompts to remember things. My brain can over work these details, work hard to remember them and equally hard to forget them or take me on a complete tangent. Imagine ‘its’ frustration when a remembered and rehearsed detail doesn’t happen. All scale of *’Marble Run,’ as I affectionately call it, can ensue.
An episode of waiting and preparation commenced this recently. Which was as welcome as awaiting the distant hum of the Circle Line! I love to sneak a bit of London in!
Here we go with a prime example of my brain!
A house maintenance appointment needed to be rearranged, as had been advised as being at 8am on the day. Oh how I laughed. Well, no I didn’t. Unless it’s *Hero’s day off. There’s no one on door duty at that time. The person knocking might laugh at being greeted by a person looking not unlike a member of the Adams family. Or more likely not being greeted at all. Then they probably wouldn’t laugh.
After the calender had been examined and checked to avoid overloading. Said appointment was rearranged for an alternative day after 1pm, following a phonecall. My brain doesn’t like those, or just about everything that needs to happen. I mean, come on people. Folk need to wash some time, and that can take a whole day!
Here is what it can feel like with my MEcfs Brain with this kind of scenario.
Brain – “After 1pm appointment noted. I think I can rally the troops for that. But don’t expect coherent talking as well. I’m not a miracle worker!”
On the day – Morning
Me – “Hello Brain.”
Brain – “Hello. I’m not ready to be awake yet. Give me 30 mins. No, make that 40!”
Me – “I need to move my body.”
Brain – Zzzzzzzzzzz.
Me – “HELLO – can I get up now?”
Brain – “Oh if you must. But go easy on the daylight. And NO stairs yet!”
Me – Creaking out of bed.
Body – “STOP!!! I need a drink!” Placed purposefully by *Hero to avoid more Cranberry Seas and other mishaps.
Me – “Schlurrp!”
Body – “Thank you.”
Brain – “Remind me again. Why the rush? How can you expect me to be up and running in 2hrs from the 3rd wake up alarm spread over 1+1/2hrs. That’s hard enough as it is. Oh and while we’re on the subject of alarms, when are you changing the melody? It’s boring!”
Me – “Shut up and listen. Remember? The appointment.”
Brain – “Oh yes, groan. That means thinking about timing.”
Me – “Yes. Tick tock. Could we avoid diversions please!”
Brain – “Will try, but no promises. Now where…?”
Me – “Stop that! I know where everything is that I need today. Remember, that was all decided last week.”
Brain – “Ok, but do you? Sarcasm, lol! Please continue.”
Me – “Oh, how amusing!”
And so it goes on. Until we reach this point⤵
Still the Morning, just about!
Me – Almost dressed, tap running, washing hands, rinsing toothbrush.
Body – “Cooee. I’m tired. Want to stop. Need food.”
Brain – La la la. 1 hour to spare. We’re on a roll. Rest soon. Aaah lovely. [Ignoring the fact that body needs food]. “Hang on,” over the noise of running water, “I can hear an engine revving and what’s that music?”
Me – “Do you mean the doorbell?”
Brain – “Maybe. Let me process that. Yes/No/Yes/No/Yes” and so on. Five faxes later. “Mmm, I think it very possibly was.”
Me – “Oh great!”
Body – chips in – “Wait up. I’m not rushing for ‘no-one’. Not even the doorbell.”
An extremely slow descent to the front door. No one there. 1 hour early!! Fantastic! Check appointment. ‘Yes, still booked.’ “Are you certain?” ‘Yes’! Then phonecall received from *Hero. They won’t be attending today!
A logistical routine utterly wasted. Aaaaaaaahhhh!!!!!!!
Brain – “I feel annoyed.”
Me – “Why?”
Brain – “Because I’ve tried to remember everything and not get diverted. Used loads of energy trying to conserve thinking energy and do everything in a rational order to preserve said thinking energy. And body is going so slowly. I’m exhausted now. So now I am actioning the *Marble Run, which will cause 1 hour of overthinking. With possible domino effect of brainfog without prior notice.” Terms and conditions apply. Please contact bill payers permission…
Me – “Oh great!”
Me – “Brain. Please stop it.”
Brain – “No! I have feelings. And they have collected their coir mats and are zooming around on the marble run. Try and stop me.”
Me – “If only.”
Brain – “Ok. I dare you. But I want 15 more minutes on the marble run.”
Me – “Groan.”
Me – “Finished yet?”
Brain – “Ok, yes. Now I’m REALLY tired and would like to think about something that irritated me about 20 years ago. Or how about a *RESOLVE?”
Me – “NO! NO RESOLVING!!!”
Body – “Hello!! Anyone listening? I desperately need food, but too weary to prepare it.”
Ears – “Well we’ve started ringing and no one seems that bothered!”
Brain – “Well, don’t ask me! I’ve been far too busy to think ahead.”
Me – “Oh for goodness sake.”
Me – “That’s it.”
You may be wondering what I mean by a ‘Resolve’? As opposed to a weed killer product with a similar name.
A ‘Resolve’, as I call it, is when my brain will suddenly think, ‘Where is X’? If I’m not careful I’m trying to hunt down, for example, a plug adaptor I haven’t used for 10 years
This used to happen all the time when I first became ill with MEcfs. My brain would insist on every ounce being used to find and resolve a random request for the location of completely irrelevant items. Leaving me even more utterly flattened and exhausted. This would often occur at night as I desperately tried to switch off. Almost like “Wallace & Gromit – The Wrong Trousers”!
Thankfully over time this has pretty much stopped. And I can now halt its progress and rationlise it. Or just tell my brain, ‘ha ha!! I know where X is and I don’t need to triple check, so booh to you’! Result!
Saying that, I still have to be organised to help my brain from wandering off on useless energy engulfing searches. It has taken years to reach anywhere near the point of organised. If something is moved to a new storage place, even a pen, I have to remind my brain several times where said item has moved to. Or, that it has been thrown out!
It’s as if my brain is constantly having to re-learn. I have been told it can take 36 repetitions for something to become routine. Do I really have to remind my brain 36 TIMES where the eye drops now live! Open draw, close draw and repeat. Oh well, if needs must. But how come I…let’s not go there.
I am sure this is a lot to do with the Sympathetic and Parasympathetic nerves. Not that one receives any sympathy from either! It is a most unpleasant symptom. But quite honestly the ME brain can feel like it is mis-firing all over the place.
It is not uncommon for words to come out in the wrong order, or the wrong word is said or a slurred mess emerges. It just tumbles out like the contents of an over packed disorganised wardrobe!
A day can end up as a cacophony of ‘me first’ from every part of your body. And if an unexpected question gets dropped in all chaos can ensue. Basically, multi-tasking is extremely difficult. Well actually, just getting through each day can be extremely difficult.
That’s where formal rest comes in, which reminds me I must factor in plenty of it over the coming days. And the essential need for *pacing anything and everything. As the *MEcfs body struggles to operate and cooperate as one coherent unit.
I don’t get so het up by it now. I accept that my brain and body don’t function as they once did. And just attempt to find strategies to help manage it. Humour being one of them. Other ‘strategi’ aren’t always as successful?
I have to laugh when it takes anything from 15 minutes to 2 days (or far longer) to remember a particular word. ‘Ppppp something!! Come on brain, it’s in there somewhere.’ My inner card index system eventually finds it. Or failing that, I just describe the meaning of the word to someone verbally or via a Messaging App, use a Dictionary, a Thesaurus, or give in and Google it, and I get an answer. See, a strategy!😁
So that is an example of MEcfs, my brain (and body) and the comedy double act. One task too many and you’re toast! I’m still reasonably sane, honest!
Thanks so much for popping by and have a blessed day.🌸
As I often try to do, I am including a scripture reference and link to a beautiful worship song. Faith takes me beyond my limitations. Without it I really would be toast! Chat soon.❤
Psalm 46:1-2a NKJV
God is our refuge and strength,
A[a] very present help in trouble.
2 Therefore we will not fear,
*Hero = My husband
*Resolve = take my advice. Just don’t go there!
*Marble Run = now that’s just being unfair!
*Brainfog = what was the question again?
*Pacing = taking as long as you need for absolutely anything, with frequent breaks of whatever period of time works for you, ie. minutes, hours, days, weeks, etc. And no, I still haven’t mastered it and is why I’m currently editing this post while flat on my back under a blankie!
*MEcfs – Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome).