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Navigating the Unknown

Its been 11 days since my world was turned upside down, and it should and is for the most part turned up side down in a good way. I feel better than I have felt in years, I literally feel 10 years younger. No pain, no fatigue, inflammation almost completely gone. Lung function improved, energy abounds walking hours each day. It’s a miracle, it’s a gift.

It came in the form of the much controversial vaccine, a high dose of Moderna. I have been tagged as one of the rare cases that they are seeing where it is actually changing how the immune system is working, helping various people, perhaps this will allow for more help for people with inflammatory illnesses, maybe something good to come form all of this covid. So I should be elated, jumping for joy, over the moon with happiness and excitement. On many levels I am, very grateful for sure, but I am also struggling to settle with this new found sense of wellness.

Trying to process it and what it means going forward is more difficult and troubling than I normally would encounter. In the past when having to deal with a change, like when given my dementia diagnosis, although, devastating, I was able to process and move into it and once I found support through DAI it became something that living with was doable. This however feels so foreign, almost like I’m living in someone else’s body suddenly, its so unfamiliar, there was no being somewhat prepared, as I was with my Dementia diagnosis, I new I was not ok, I new something was wrong, it was a matter of working through to get the diagnosis.

This is so opposite, going to bed, plagued by pain and fatigue, so much body inflammation it was visible to all, to wake up feeling vibrant, energized, full of life, able to breathe, walk with ease, no pain. It’s like questioning if this can be real, if this can be happening to me, for the first couple days I wondered if this was the up we see in people before the final decline to death.

More questions than answers, yet knowing the doctors have some answers but this is all new for them too. Will it last? Will it peak and then the decline back to or worse than before? Will this require a dose of this vaccine once a year of 6 months or ever?

I know I should just embrace it and be thrilled but after feeling so sick for so long, its hard to process the sudden change and by sudden I mean within 24 hours, if you are sick and slowly get better that is expected, this was totally not expected by anyone let alone myself. How is this going to impact my dementia? Another unknown, reduced inflammation should mean clearer days, should mean a slower process of the disease. But will that happen?

It has somehow changed me, I can’t explain it, I feel so very different than 2 weeks ago, it’s making decisions impossible. Never one to procrastinate, just make a decision and go with it, right or wrong, you can always change things later, that was me. know I can’t seem to make a decision over the simplest things, let alone the big ones. i’m way more emotional than I normally am.

I have decided the best course of action is to talk to the doctors some more and then just try to be kind to myself and give myself time to settle into this new found gift of life, and truly thats what it feels like, a gift of life, one day you’re facing the do I need to look at assisted living, knowing you are in the 8th year of a 3 to 8 year prognosis, to being handed new life. It’s a lot to process, it also comes with some feelings of quilt because you know so many who are struggling with their own illnesses. It’s just a lot, I sort of feel like I am stuck between these two very different worlds or places, and who and what I am know and how do I proceed? A confusing time.

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.

5 replies on “Navigating the Unknown”

I also had Pfizer the first two times. I was just talking to my husband about this and we are going to book appointments at his work, they offer Moderna. This morning I had a five pound weight gain from yesterday. This is all from inflammation. The water pills they were giving stopped working. I would do anything for relief and even if it doesn’t help at least I will be fully vaccinated against Covid. A win-win either way 🙂

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