Surprised I get to to enter another crack at making it another trip around the sun. Somedays it’s hard to believe, especially during periods when I struggle, and although I don’t have to do it alone anymore, very often it still feels like a battle that you are on your for, not because of anything else anyone is or isn’t doing but because it’s the sheer nature of the disease it’s self. In fact often writing is the one place that I can or actually my brain still can get things out. It is so often frustrating trying to get others to understand what your brain is doing, everything looks good on the outside but the from inside here it’s very different. So much time is spent trying to put the brave face forward, but let me tell you the fear that grips so much of day to day life, it likely would be too much for many. Some days you feel like giving in to it, other days you want to yell it’s ok, I’ve got this. It’s difficult for those who care for us, sometimes one wonders if it’s fair to even ask, sometimes we try to hide our fears, it’s a way to try to protect ourselves and it’s also a way to try to protect them. What we most want is to have a soft place to be with it all, even if we can’t explain it, and we want to have the joy and treasure everyday.
For me I am trying to navigate through the whole process of a complete and beautiful change of life, Marrying the love of my life for the 2nd time, is more than I ever felt possible. Trying to be the best partner I can be despite all the challenges of my dementia. I know at times I am not great at it, I am fortunate that his loves runs so deep that he’s stands beside me through the challenges. I hope and Pray that it won’t become too much for him. So this last year a move at the beginning of the year, remarriage before the end and starting 2024 looking forward to create a lot of happy memories and not taking a day for granted. Continuing to advocate here in Canada., it takes a lot now to do it, it uses so much brain power it exhausts me for a long (sometimes weeks) after), but it also inspires me to keep fighting and going. So 2024 please be gentle on me, the last number of years have taken a toll.
I want to talk about ambiguous loss, lots of talk about it, I want to talk about how it feels from this side of the diagnosis. It’s difficult to be very aware of all the losses from careers to physical, mental and emotional changes. Every time I have to navigate another challenge, from facing things like my vocal abilities disappearing and at sometime it becoming a permanent non verbal status, too extreme lightening bolts roaring through my brain, to night terrors that are beyond anything imaginable, Balance, coordination, vision issues, every one of them make you aware of the losses it has created, it also slams back into the reality that we have a clock that’s running at a faster pace. I am acutely aware that the 3 to 8 year time I was given to be on planet has expired by two years, being told a time frame, no matter if you want to our not you can’t erase it, it haunts you at times. So yes, Dementia is a lot, from the complications with stroke, heart issues, major organs being effected, it’s a load too many have to carry. I say I live well with my Dementia, and I do my very best to do that, but it is not without a draining amount of work, it’s just most often, everyday, although some easier than others, what the world sees is a woman trying to be brave and courageous.m
I am going to share some highlights of 2023, the hardest of 2023, was losing my little Pheobe, I will miss her always. the biggest and best of course, reconnecting with my husband, and gaining my lovely family, hopes and wishes and dreams do come true. Enjoying, fishing, camping ,rock hounding, and prospecting for petrified wood, all incredible and beautiful moments. Spending time with family and friends, so many wonderful moments. Being involved in my advocacy, and all the incredible friendships that it has brought. Having the opportunity to meet so many amazing people, 2023 brought more blessings than I ever thought possible,
So as I move through this new year, the first thing is my health, dementia creates challenges that are so complex and I have things going on right now that scare me, worry me, funny that never used to happen, but because my life is filled with so much love and joy, it’s terrifying to know that my illness can take it away, and I want years of this, so the fear is real, but I am trying to navigate it, and not let it overtake me. Next week more scans, more Drs appointments, blessed to have the doctor I do.
So I will be writing more blogs along the way, but my focus of the moment is to make the most of everyday I am given. Please stay connected, I am always here.
Chrissy's Journey 