I’m struggling thru the disappointment of:
– spending money for a terrific cause, the International Association for Frontotemporal Dementia, and then being too ill when there to attend.
– of not having the opportunity of meeting my friends from the FTDSupportForum.com, when they were mere yards from me
– and knowing in my heart I am diminishing.
But even with my realities, I keep storing empty cans & bottles for next year’s Farmers Market, to fill with flowers from my garden. Even tho’ my garden was accidentally killed in a weed treatment.
I know I withdraw into my coccoon to heal, and lick my wounds, with the hope of feeling better when I wake up. And, surprisingly, some days I do.
Somedays I wake up at the usual time I would if I were still working. The notepad by my bed is filled with ideas for FAITH magazine, or an article, or a thought to create something.
Somedays not only do I wake up, feeling like ‘myself’ but have found myself picking out my clothes for the day, dashing to the shower, and in the middle of putting on my makeup, suddenly realize there is no work, the clothes I picked to wear for the day I could not fit into even if I tried, and the pointy-toed high heels would kill me and possibly injure a passer-by.
Somedays I cannot not find the energy to get up at all. Preferring being stuck in crazy dreams than facing that day’s truth. I am slowly losing who I was, and am painfully acknowledging who I have become.
But today, I got up at 9:30a, wandered around in my flannel nightie (it’s getting cold here), went back for a nap, and then put on yesterday’s clothes and come downstairs.
And then I weep at the gorgeous variety of colours surrounding my home, and I wonder if this will be my last ‘dance’ with October and that this symbol of seasons changing represents my life.
…
And then
Somedays I just have to laugh at the Weeble I’ve become…
Papa? It’s me, Vicki
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Welcome to the human race! You are high on my list of best examples…
None of us are promised tomorrow so we just grab on to today and thank the Lord for giving it to us – okay, some days that’s hard when your plans are turned upside down and nothing turns out the way you expected. You shake your head and say to yourself, “What was that all about? Guess I won’t know till I get to heaven and by then I probably won’t care!”
I had to look up what a Weeble is (uneducated Canadian ya know!) and this is what I found:
“Weebles Wobble But They Don’t Fall Down”
Wow! Being a Weeble is a GOOD thing!
Blessings, my dear sister in Christ! You are such a blessing to me, you have no idea!
Judy
Vicki,
I’m so sorry that you are going through such a hard time. It must have been very disappointing to not be able to attend the events of the FTD Conference, especially after all the hard work you put into it ahead of time.
I’m settled into my apartment in TN…it took me much longer that moves in the past. There seems to be some confusion in my mind, that I’ve not been having for a long time. Also, short term memory lose on several occassions.
I had decided that maybe I didn’t have FTD afterall, because all had been so ‘normal’. (Even though in my heart I knew it, based on the PET/MRI scans showing moderate atrophy in the frontal/temporal area.) I’m sure the move (all within a month of my daughter getting the new job here)is what has caused my mind to ‘take a break’ from reality. Also, I’m busy working to get my 45the class reunion info in my computer & printed out to all classmates by the end of this week. Plus, as a new member of the community, I’ve called/gone to as many places as I could locate to see what events/activities they offer (water aerobics/prayer shawl ministry/senior center/recreational center). I will have to back off & not try to do ‘it all’, as was my usual tendency. LOL….seems I ‘forget’ that I can no longer be that type “A” person that I’ve always been.
I understand not being able to log into the chat room yesterday…I’ve forgotten how to log into several sites lately. Jim even had to tell me how to change my font color yesterday in the chat room.
You’re in my prayers for better days, Vicki.
Hugs, Sharon (aquawings)
Dear Vicki, You put your whole heart and soul and everything you have into battling for understanding and recognition of FTD ~ no-one could do more and no-one could do better! Your courage is a constant inspiration. It must have been so frustrating not to take part in the conference but because of you, so many others have taken an interest and been supported in their efforts too. We all hope to see another Fall, if it were solely in our hands. You are a blessing to us now, thankyou dear V. Hugs freda
Dear Vicki,
Please don’t ever give up…here’s what one man with MS who lives his whole life in a wheelchair can accomplish…and yes, you know him:
http://www.youtube.com/watch?v=na2QeX1EvlU
Msgr. Marucci…hat’s off to you
and to you as well Vicki!
Fran