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Walking on Quick Sand

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It’s been a couple of days of feeling really good, twice I had bouts of severe rib pain, stopped me in my tracks, took my breath away pain, but this time it only lasted a few minutes, two bouts over two days and none since. Those two bouts terrified me though brought me to tears, terrified all the good that had come since the Moderna shot would suddenly be gone, terrified that I would end up back were I was three weeks ago today, or even worse.

I have had energy, moving large pieces of furniture, even carrying it up and down the stairs. So physically still seeing all the improvements, but noticing more of the cognitive issues that likely I wasn’t because of so much of the focus was trying to navigate all the pain, and just get through the day. I am becoming aware that I am forgetting names, of people I know, people i have called by their names for a long time and now I am looking at them and its taking me time to have the name come to me or I’m-calling them by the wrong one, twice this week in meetings I had to look at the little box to see someones name during meetings, something Ive never had to do in the past, I know these people, suddenly their names are disappearing from me. I cant find the name to fit the face. Those things are a frustration but ones that there are work arounds for, they are not live ending, but they are all part of this journey.

The big piece for me right now is my mental/ emotional state. The best way to describe it is that I feel as tough I am walking on quick sand, never knowing if the next step will suck me under and sink me. Holding my breath with each step. I have so many more questions than answers, answers which may not come for years as the learn more about the effects of covid, of the vaccines. Why is it helping some of us, while making others sick.

Its even difficult to talk about because there is always those people who question your diagnosis, ( That one still makes me angry, I always want to say ” like your a doctor right? ). So you know full well even if they can see the difference from three weeks ago till today they won’t believe what you’re telling them, so it sort of makes you feel like you’re going crazy, yet you know you’re not. Then theres the feeling guilty for feeling so great at this moment, for being given this gift, this miracle. Its overwhelming and I am having trouble navigating it all. It was a drastic and sudden extreme change. In many ways I feel like I did when my husband died, like I was drowning, couldn’t breathe, couldn’t find my footing, if I am honest I am not actually sure if I have ever found my footing, that is expected under the circumstances. This time I should be jubilant and in some moments I am in others I’m in a heap crying. My doctors say just get out there go do all the things you’ve wanted to do, and a piece of me wants to do nothing more. The other part of me feels almost frozen, afraid if I do, somehow it will start to unravel and take me backwards. It is easy for others to say well this or that its totally different when you’re in the eye of it. In this situation I don’t know is all the inflammation going to come back, are my lungs, and all my organs going to start malfunctioning again, as quickly as my specialist said ”the switch flipped” is it going to be flipped again. This is such a big event that I am going to see my neurophysiology. Doctor so that I can have the help to navigate this. Today I see my doctor again.

I do and am enjoying doing so many things that we normally take for granted, I am finding the joy mixed in with all the other emotions, and I know Ill get there but right there but right now the best I can say is I’m a hot mess, trying to navigate through the quick sand until I get to solid ground.

Photo by cottonbro on Pexels.com
Photo by Bakr Magrabi on Pexels.com

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.

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