My last week ( perhaps two) has been unusually hard, just a bit out of sorts, life just not beating the rhythmic pulse I adore.
I’ve been ill with some bug, pneumonia. Never had that before in my life. It’s horrible. I rarely get “bug” sick, haven’t had the flu since I was in my late teens, I can go years without a full blown cold, only sniffles here and there. I am a big believer in vitamin C. It’s awesome for not only your cold symptoms and dispelling them, but your skin and brain as well.
In the midst of all this, I am still maintaining my best attempts to stay connected, physically, as well with my on line family at our campfires.
I stayed away from a weekly gathering that I love so much, just incase, many could have been susceptible. I made sure during ” the incubation” period, I stayed close to home, it was the time when I could feel something was creeping through my body. I knew something was amiss. Instincts still in Spidey mode. Lol!
In my past bloggy thing entries, I have said how much I want to help, advocate, make a difference, especially locally. Where I live, I feel there is not a lot of support on so many levels. Nothing in the forefront; just silent movements in the background, in my view.
I feel, on a personal level, that within this region, this disease ( even though there are almost 8 Thousand people living daily with Alzheimer’s in a population quite small), that the fragmented lives are left to errode. There is still a looming silence.
At this point in my Alzheimer’s , I believe I can make a difference. I opened myself to offer myself, experiences, knowledge and heart to help change what and how my region is viewing this disease.
It’s not working how I thought it would. Don’t get me wrong, there are things that are going on, but to me, it just doesn’t jive. It’s not progressive enough.
After a lovely welcome at a meeting, enthusiastic responses, I feel my efforts were in vaine.
Change never happens overnight. I know that. I know I don’t have the power to do that. It’s a collective movement, and it can take time. But I am lost in the very real notion, that time is a luxury I, as well as many others, no longer have. So I feel broken, kinda empty.
But not defeated. I have overcome many obstacles in my life, this is just another one. Point blank. I am not deterred.
I’ll update you on my progress as that rythmic pulse heightens and becomes aligned. No race is ever won on the first corner.
Segue
Just looking at the clock. It’s well past 11pm. Sleep and the patterns I now experience are silly.
” Still it cried ‘Sleep no more!’ to all the house: ‘Glamis hath murder’d sleep, and therefore Cawdor shall sleep no more,—Macbeth shall sleep no more”. W. Shakespeare.
It should say Janet shall sleep no more!
It all just sort of happened, sleep has become an elusive jokester at times, unpatterned and random. So random at times it would worry me.
Years past, I loved a good nap. My cat naps lasted 3 or 4 hours, very catlike indeed! Now, arrrgh, seriously can be 7 minutes!
I fall asleep, then when I awake, only minutes have past. Seriously??? Did that just happen? It’s super wierd.
I know that I don’t physically feel exhaustion as I did before; I am no longer working, I gave up driving voluntarily not by Drs orders, don’t spend a lot of time shopping or in restaurants, I walk daily, some days more than others. My life is not as physically “challenging” as it used to be, but I stay fit.
But my brain, that gets exhausted. It honestly took a while to figure it out, what was happening. My brain was tired, my actual brain.
With this disease, as we try to process, navigate and do “all the stuff” daily, it’s unknowingly exhausting. Our brains have spent years rewiring itself so we can maintain “all the stuff”; constantly finding ways to keep working. THAT is exhausting stuff and also so amazing!
Dear Brain,
Thank you for trying so hard. I know you are still trying to keep me going, you are the best, sincerely, Jan.
I can only surmise that these new cat naps are the results of the ongoing efforts by my brain to keep me running. I’ll take it!
Nighttime sleep is a whole other creature.
Bed by 8 pm, up by 4am, sometimes 3am. ( Obviously except today, lol but I have a sneaking suspicion I’ll still see 4am)
At first I found this so annoying, frustrating. Who wants to be up in the dead of night? The birds aren’t even tweeting.
But now, I enjoy a new silence in the ambient light of the predawn sky. The moment before the dawn is truly the darkest. It’s absolutely beautiful. And suddenly, the sun peaks in and the world brightens to each beautiful day.
I have missed seeing this wonderment most if my life, only reading of this beauty in poetry or hearing if it in spoken word.
This disease, although devistating, has also provided real opportunity to experience many things I have longed to. Small thing, real things. Life got in the way of living these experiences. I, again, am grateful. Strangely grateful.
Having said that, being grateful is a choice, no matter the circumstance. Gratitude is stored in the heart not the mind; that is powerful to me, those few words. In the time to come, I may not remember the word, but I will feel it.
There is 100% chance in the coming years I’ll never remember these early mornings as well, but I will how just how alive they made me feel, forever in my heart.
I know things are changing. I’m stepping out with Faith.
Here is a beautiful song by India Arie, be inspired!
Stay well my friends, Jan
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