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DisOrientated

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It’s a very strange feeling, waking up and looking outside trying to decipher if you’ve been a sleep for two hours or eight. Not knowing if it’s morning or night because it looks the same as when you went to sleep, there is no daytime or night time it seems, there is just this very uncomfortable orang/ grey, not dark, but not light, unlike anything I have ever lived in, oh I’ve had smoke filled skies before, but I like many feel that somehow it feels different, and it’s been prolonged, and we’ve never experienced this type of heat as well. The sun and the moon look the same, they are too somehow disfigured by the smoke that fills the air.
it feels heavy, it feels dark and ominous. The heat dome building again, holding your breath and praying the lighting forecasted for Saturday doesn’t come. It confuses your body, and brain, I never thought it would be so disorienting, but it is. Trying to focus or concentrate gone. I haven’t been able to complete some meetings, I get dizzy and nauseous from the computer screen, knowing and wanting to do these things to be fully participating but totally unable. Even trying to write this is challenging. I am wondering if this kind of disorientation is what people feel at later stages of their dementia journey. It doesn’t feel good.
Yesterday I was trying to change my brain by working on some little projects, sewing some decorator pillow, trying to get my. Brain using other parts, since the parts I want to use seem to be so challenged by the symptoms my body is feeling for the effects of the fires. It goes to show how much and how severely environmental conditions can and do impact us and our abilities and also goes to make one understand that maybe part of the reason our abilities change so often has a lot more to do with environmental conditions than we give heed too.
The air quality so very bad, breathing is hard, headaches are the norm, I have them everyday all day, go to sleep with them and wake with them, they a not my brain pain from my dementia they are severe headaches from the environmental triggers. A tight chest, and fatigue, sleepy., this is my days at the moment, living in the fire zone, everyone is stressed and scared, grumpy and short tempered. I have been staying tucked indoors, but the smoke permeates in, even with doors and windows closed.
My specialist called me on Monday to check on me, they have recently had to increase my heart meds, he said he’s ordering tests he’s concerned with how much damage is being sustained due to the prolonged heat and smoke, to my heart, lungs, vascular system. I am feeling a level of frustration with myself for not being able to do the advocacy work at the level I like to work at, but am trying to offer myself a little kindness and remind myself that perhaps just getting to the other side of this challenging time is enough for know.
This year feels so much harder than last year, I’m trying to remind myself that people without any illnesses are struggling so I need to be gentler with myself. We also have the added impact of our covid numbers increasing, it’s causing people a lot of stress again, more restrictions, it keeps going on it seems.
I keep telling myself I will get back into working as hard at my advocacy when the time is right, that when the environmental impacts lesson, then I will again be able to participate my fully. I guessI and most of us have always understood that the environmental impacts on us with dementia were very real, this is the first time outside of just things in day to day life that cause us stress, how much it does impact us. And how it impacts us not only cognitively but our physical well-being too. My dementia feels quite manageable in comparison to what the environmental triggers create in it.
For now trying to stay positive, finding small simple things to provide a sense of joy, and because I can’t be out in nature which has always been so vital to my well being spending time looking at photos of the many beautiful places and spaces I have been fortunate enough to spend time in. They bring a sense of calm, so I will spend time in nature through them.

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By Chrissy's Journey

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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