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Realizing My Brain just stopped

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I was up early this morning, I had a loaf of bread proofing overnight, it needed to go in the oven. My sister in law was going to be here by 9 am to help me work on getting family history stuff done, which has taken on more of an importance at this particular time. Yesterday I had a teary day, I think just a lot of emotions running right now. Understandable, expected for most everyone, two years of a lot of uncertainty, followed by the invasion of the Ukraine, by Putin. I don’t say by Russia, because the people in Russia are rallying against it, they are paying the price for a man whose need for power trumps anything and everything. It’s creating a new level of stress for people, and I am sure its what created this urgency for me to get these records put into the family history site, most records especially from those who were from Germany where destroyed so the fact that my grandmother, Uncle and mother were able to keep them hid away and safe tells me they must be preserved. Dating back to the 1800’s, it felt good to get the information inputted and knowing I had done my part to preserve their history.
I have been feeling physically really well limiting time on social media/ news etc. Ensuring I keep my mental health in check, but then this afternoon out of nowhere, I found myself standing in the middle of the room, no idea how long for, no idea what I was doing or going to do. I have felt off the rest of the day, wondering a small TIA, nothing that requires medical interventions, just a brain thing, first one since the beginning of January. Maybe I am feeling the stress of all that is going on and been pushing beyond what i should be. I feel fine, just a blip, physically feeling great, so because everything for me is vascular based, just a blip, maybe I needed that reminder.
I have also been thinking a lot ….. update, had to leave this last night, needed to sleep, another indication of the blip, but this morning I am feeling refreshed, and hoping it was indeed just a blip. So back to those other thoughts, thinking a lot about how for many if there was help, resources and rehabilitation, In those I include things like programs, music, art, dance, walking, hiking, biking, baking, cooking, the list goes on, along with the more traditional rehabilitions, physiotherapy, etc. Accessibility to these types of programs, enhance quality of life. The constant focus on ”memory loss”, I cant believe after all the years of advocating, we are still there, no wonder the stigma remains. And why is that, is it because it has become the comfortable place for people when it comes to dementia..? Well I for one am tired of people being comfortable with the old outdated views. Vision problems, speech, gait, pain, fatigue, just to name a few. I hate trying to trying to justify my illness, every dementia has its own complexities, its as individualized as we are. The brain the most complex organ, so when a disability stems from this very complex organ we need to somehow and someway get the focus to shift away from just the memory component and focus more on all the other aspects that effect those living with dementia. For many living with dementia, what effects that we feel today and affect us may not be the same ones that effect us tomorrow. We are flexible and adaptable out of necessity, we need others to be flexible with us. Some days I don’t want to do dementia, some days I just want to do life. I have to live with my dementia every day, but I don’t want it to be all that my life is. My advocacy work is deeply important to me, makinf a difference is deeply important to me, but living, living is equally important to me, doing things I enjoy, laughing, crying, taking in all that I can while I can. Its a struggle so often, to give myself permission to put the dementia banner away for a spell and wave the living life flag. Today, as my heart breaks for the people of Ukraine, its a stark reminder that despite whatever challenges I face I need to remember to live today fully.

By WWW.Chrissy's Journey.com

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

One reply on “Realizing My Brain just stopped”

Hi Christine,
How scary it must be. Glad that you are okay and able. You are so right many people do not know all the effects of dementia and your blog has been opening my eyes to the other pieces of this disease. I know that you have mentioned the walking issues, fatigue, gait and strength issues and it is something that I am going to speak with my neurologist. I too have many of those issues, but have been told my seizures are causing them.

Hope you have better day.

Michelle

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