It’s been a while. And there’s a reason for that. Not the usual writer’s block but rather simply not knowing how to “do it” anymore. I’m talking about writing the post. Stick with me and I’m going to try to “do it”. I’ll explain as we go along. There won’t be anything fancy, just text, because I simply don’t know how to do that stuff anymore. It seems to have gone from my brain and I’m back to being a beginner again. I can hardly find my way around a keyboard anymore.
A few weeks back, a friend asked me how I was. That’s always a hard question. Do they want to know the truth? Can they handle the truth? Can I handle telling them the truth? Or are they just being polite? For a multitude of reasons, those questions included, and a number of others, I told her was fine, just pretty tired.
It was true. Well, the tired bit was. The rest was far from the truth, and for that reason I apologise to my friend who asked. At the time, I was actually terrified, but past experiences (with other people) threw up warning signs in front of my eyes:
“Be careful what you tell people.
It might not be what they want to hear.”
So she got the “tired” line. I really wasn’t sure anyone would handle my “terrified” line and I wasn’t even sure I could explain it if it turned out to be a genuine concern of how I was.
A few days later, a meme jumped up on my screen. They have a habit of doing that, and most are there to laugh at and keep on scrolling. But a few actually have some wise words. This one, struck me as perhaps along the lines of what I could have said. I would post the actual meme, but that is way beyond me right now. So here are the words:
“Are u ok?”
no, I’m not. not at all.
my life is falling apart. i’m depressed.
my life is falling apart.
i want to tell someone.
maybe I should tell u. i
need someone to hug me. tell me it’s
gonna be ok. i want to tell someone
everything. that’s happening to me…
but its ok. i’m fine. i’m just tired, thanks.
And then this morning, another meme… (I promise this won’t be all memes)
It was almost word for word, what I should have said had I thought my friend would handle the truth, perhaps if I could handle telling her truth. I couldn’t. Because I was terrified and putting it into words was too much. And anyway, maybe she was just being polite. I suspect now that she wasn’t, that she really did want to know. But it was too hard. I was too scared.
Sometimes you just need to talk about something ~Karen Salmansohn
not to get sympathy or help, but just to kill its power
by allowing the truth of things to hit the air.
That hit me. It needed to hit the air I could (even if slowly) do this, to kill its power. And maybe even to share something that someone else might just find helpful.
Six weeks after my mother died of Alzheimer’s Disease (back in 2019), my doctor concluded that brain fog wasn’t “the” problem (for me). It was a bit more. I have Mild Cognitive Impairment (MCI). The irony!
Years of supporting my mother through her hellish journey, and now, perhaps I am entering my own.
Of course, MCI is not a death sentence. It’s not even a sentence that says I will definitely develop Alzheimer’s Disease. But it is an indicator that dementia, in the future, is possible. And meanwhile, my cognitive functioning is not quite what it should be, especially considering my age (I’m 56).
If you want a more accurate explanation of MCI you’ll have to talk to Google. I’m not a doctor. More accurate explanations are out there, For now, I just need you to read what I am putting to air.
This isn’t about explaining the symptoms. They’re are there, and growing in intensity. That is why I am terrified. I’ve seen dementia at its ugliest. Not just in my mother, but my grandmother and perhaps more so, the twenty five fellow sufferers who Mum lived with for three years in a dementia facility.
It’s not just about your old grandmother forgetting who you are. Dementia is so much more.
But maybe I will never develop dementia. Let’s hope not, even though some warning signs are there.
Thought, and turning thought into action, is the bit that I’m battling right now. Seeing something through from a thought, not getting distracted or sidelined (by self) and making something happen.
Writing this, is harder than it ever was even nearly 10 years ago when I started blogging. I’m a beginner again. I don’t know what symbols mean anymore and I don’t know how to make anything work the way I think I want it to. Crazy screens pop up in front of me and I have no idea how that happens or how to get rid of it without pressing ‘backspace’ or ‘delete’ a whole lot of times.
MCI took another step up recently when I forgot a PIN for a bank card. I had used it for about five years with no problem, but this time? It was just gone! I thought I’d remember in an hour, maybe even tomorrow. But days later? It’s gone. And I eventually admitted defeat and asked the bank to change it.
It really rattled me, even though there are lots of things now days that remind me that MCI really is what I’m dealing with. Forgetting is the least of my worries. I am just in a state of mild confusion. Well, it doesn’t feel so mild anymore, and it seems pretty constant. That’s what terrifies me. What I took for granted is so much more difficult.
For those who battle brain fog, think brain fog at its worst… and on constant steroids.
Everything is becoming harder to think through and to turn tinto the action I want. Not just on bad days but every day.
This is embarrassing. No, it is. Please don’t minimise this and tell me we all struggle sometimes (particularly as we get older). That’s true but it’s not what I am talking about. It’s embarrassing to use wrong words, or not know the word you want to use. It’s embarrassing to not be able to do the things you used to take for granted. To lose track of a conversation. And it’s embarrassing when people try to cover it up by laughing. There is stigma involved in how we function on a cognitive level. It can be hilarious apparently, if it’s not you it’s happening to.
It’s also so frustrating. Years ago I thought by now I’d be at the top of my game by now. I’d have seen my career go the way I planned and life would be pretty good. It hasn’t happened like that. It’s not happening the way I wanted in so many ways.
I have no (accurate) thought about where I’m headed, because I just don’t know. And I don’t know at what speed any further decline will take. But I look at the last two years and I’m terrified.
I wonder how a possible dementia illness might interact with the chronic illnesses I already have. How do I deal with likely kidney failure if I have Alzheimer’s? And how would I deal with the pain of fibromyalgia if I have little comprehension of, well anything?. How does dementia work alongside Borderline Personality Disorder? All these questions. Over and over in my head.
It’s hard not to see my mother’s journey and ask myself more questions about what her reality was. It must have been such a lonely existence for her, inside her head, and while I know that I was there for her every step of the way, I wish now that I had comprehended better what she was experiencing. I wish I had been better able to comprehend life in her shoes.
But cognitive decline is not like that. Scientists don’t know enough. No one can tell me what is ahead and I can’t accurately pinpoint how it will feel for me in the future. I just know that right now I’m terrified. I’m not fine. I’m not ok. I was right to say I was tired, because I live with chronic fatigue and being tired is part of that. But it wasn’t the real story.
In my last post (a while ago now) I said I wanted a village. I’m starting to realise that actually, I need that village. MCI is something that you can live independently with, but I guess for me it is becoming a lonely, rather scary space to inhabit.
For many reasons it’s hard to ask for help. And so I usually don’t. Perhaps I need to find a way of communicating that I’m beyond tired… and right now, I’m not fine. Maybe then, I might lessen the power of the terror.
Thanks for reading!