Good Morning! Hope you are all safe, happy and well. I am having such a horrible morning, it totally sucks.

Look, I’m not complaining……but I’m complaining. Playing the cards that you are dealt is one thing, but come on!!!!!

Having dementia is just as my friend Christine ( on Facebook, Chrissy’s Journey) said, a shit storm that never ends. Well, today the shit storm is a tornado.

Yesterday for the first time in a long time ( I don’t know, it could have been only 2 days, the Blursday effect) I felt reasonably normal. The constant pain and pressure in my lower back and hips was all but gone; I know for certain it was the best feeling I have had for MONTHs, I even told my daughter it was magical! I woke up this morning, a little later than usual, about 5:30 a.m., went downstairs to make a coffee, things were fine. I washed the dishes, tidied around, took my time ( always cautious ) sipping my coffee along the way; I did my stretching, feeling quite confident after a good nights sleep and a great day yesterday; sat up, went to the washroom, stepped outside on the front porch and enjoyed the view, came in, BOOM. I was done.

Immediately my hands started aching; throbbing so intensely I am sure I screamed a bit. Then, straight to my mid back and lower back, and wriggling down my legs, deep, deep, deeeeeeeeep inside my legs. It took me forever to get up the stairs as my hands couldn’t grip the rails and my legs were so sore. Shit Storm. Complaining.

I do my best to stay positive, I honestly do, but this is physically and mentally exhausting. I am thankful I do not have any underlying medical conditions. Having dementia with underlying heart, lung, liver, kidney, arthritis, or any other human disease is devastating. Just one interrupted signal from your brain, one synapse loss, and a true domino effect starts though the body. One after another.

Now, having said that, I did not start out with having underlying conditions, but truth be told, with every lost signal in my brain, every rewire of the still living neurons, my body is still dying. All of this is saying, that as of now, I may just have additional underlying medical conditions brewing, it just may be too early to tell. Even something as “minor” as the common cold devastates the dementia body. Every cold takes longer and longer to fight, sometimes weeks, never days anymore; the virus affects you in ways so unlike a healthy body, a cough turns into pneumonia quickly. COVID19 is deadly to us. As I wrote before, with our brains under siege, there is no way you can say that our immune system is not highly compromised.

It is imperative to understand that not only are the “known” functions diminishing, but there is also so many others on a cellular level, all the science stuff we never think of as we live our daily lives, the hidden things that act behind the scenes, things like waking up calm and not startled; things that let you turn off your alarm & know that it is an alarm; to have a shower and understand water, walk down the hall while understanding depth, get dressed and choose appropriate clothing, bend to put on your shoes while understanding left & right , close & lock a door, drive, eat, drink, make good choices, smile…… micro changes adding up to big things. Progression. Its a slow dying process, micro-bit by micro bit. Having normal daily routines go from aptly doing to no longer understanding process, is terrifying.

It can take the brain days to “re-wire” a new connection in a dementia brain, sometimes there is just no new connection made and we loose, to be blunt. But our brains are amazing. Our brains will constantly rewire allowing us ( I hate this phrase) to adapt ( it’s used too loosely), EVOLVE is more like it!…. until we can evolve no more, our brains run out of room, we run out of healthy brain matter, no more good material for neuron-regeneration. The tangles win.

Today, as my dementia progresses, the pain is winning. Stupid pain. BUT, my spirits are up, just a little deflated. As I think (lovingly) of all my friends who are living each day with this disease, my heart swells. I know that you, too, are championing your day, no matter the setback. As we all navigate and build new avenues of living well, truly one moment at time, we understand that our lives, our hearts, are united.

Moving on……

My Friend Kate, (kateswaffer.com) recently wrote a blog which included 20 reasons for #Gratitude, it is a wonderful list ( a great read) so I thought I would also write down a good list of 20.

1. I am grateful for my family and thankful for their understanding.
2. I am grateful to be able to share my experiences with all of you, and to hopefully bring to light that Dementia is much more than memory; thank you all for staying connected.
3. The grass is never greener on the other side of the street, it can sometimes look that way, but growth in & towards gratitude comes from taking care of your own, family and friends.
4. Eating your favorite foods is a great way to put a smile on your face, I am grateful for Flakies and vanilla pudding.
5. The arms, legs, feet, and hands that give me freedom of movement, although sometimes stubborn and sore, I still love them.
6. I am grateful to have a place to recharge.
7. I am grateful to know there are amazing times I haven’t yet experienced.
8. I am grateful for those good people who’ve inspired me to be my best, to keep going and inspire others.
9. I am grateful for creative coasters, colorful little squares that cradle my coffee cup.
10. Technology. I love it.
11. Pretty scents that fill the air.
12. I am grateful for bouquets of wildflowers and bouquets of cut flowers. I am grateful for flowers.
13. Bees. Save the bees.
14. I am grateful that everyone tries.
15. I am grateful that there are so many choices when your buy sunglasses.
16. I am grateful that there is the color yellow and grateful for the smell of a wooden pencil ( lol, I know that’s weird, but have you ever smelt a wooden pencil? Try it. HB4, just like in grade school.)
17. I am grateful for my Daughter.
18. I am grateful for my Mum.
19. I am grateful that I do not know a life without my Grandchildren.
20. I am grateful for my bare feet in fresh dirt, the smell of fresh tomatoes, the way the warmth of the sun feels on my skin and how cold water is from the garden hose.

Next………..

So, the world is slowly opening up, be careful out there.

Stay well my Friends xo Jan xo

This song, by Rob Szabo, I first heard in 1996, when he performed at my nightclub, enjoy!

https://music.youtube.com/watch?v=CBVCjpeef5g&list=RDAMVMCBVCjpeef5g

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