Arrrgh!  W.O.R.S.T. EVER.

The pain started creeping in Friday around 5 pm; by 6:30 I was done. Bed.

I got up today, Sunday, at 7:30am. And by “up” I mean I went from the bed to the couch.

I live in a studio type apartment, so the transition from bed to couch is easy.  Not having dividing room walls helps in more ways than just that.

I can easily move around, keep clutter and stuff to a minimum.  My walls are full of pictures but the walking space is emence.  35 x 28 @ the biggest, with a portion or the width dropping to 20 wide for kitchen and bathroom.

I only have my bed, 4 dressers, all used as furniture as I have redesigned 3 of them  to be used that way.  A chest, a day bed on the far side of the room; my couch is a small two seater kinda large chair; a comfy reading chair and a chez that I redesigned as well. Oh, And two big rugs , a large 4×4 automan,  floor mirror and an antique floor radio. That’s it. And lamps. Storage.  I left all the “stuff” @ the dumpster when I moved.

Anyway, I wrote before about this pain and burning in my spine. It’s gotten progressively worse since May. This time topped all other events.

Apparently it’s the cerebral and/or spinal fluid or both. It also has to do with the grey matter in my Brain.  I’m not too sure of the connection ( completely)  but I have too much of one thing and not enough of the other.  It causes this pain.  It’s part of the disease some patients endure, I am one of those patients.  FML.

This is the longest event I have had. It was and is absolutely aweful.  I only got up cause I felt I could, the pain is still there.

I reached out to one of my online friends, Christine.  She isnt having the greatest few days either, but Christine took the time to chat with me, understand and encourage me.  I thank you my friend. Xo. We chatted for a while, bragged about our own suffering, compared living skills,  laughed and cried a few tears, then went on to encouragement.

There is alot I am willing to put up with in this disease, but there is alot I cannot stand.

I wear size 5 jeans and pants. ( Some are size 7 so they are worse)  I have lost so much muscle mass I wear leggings under all my jeans.  I have pushed new holes in the thick leather belt I wear all the time.

I am so cold all the time I wear a bra, one or two tank tops, a t-shirt and on top,  a long sleeve shirt and a hoodie. No one would ever know how tiny I’ve gotten.

Walking is clearly getting to be an issue due to pain. I have to get cream for my coffee…..the store is literally across the street and I’m gonna have to use my crutches. Totally sux.

All throughout the past 37 hours my sleep was eventful.  I honestly just layed in bed, phone in hand, watching Youtube or Netflix, eyes closed trying not to day sleep,  trying to stay awake for as long as possible.

You see, the medication I take, Aricept, will make you have nightmare’s.  I found out yesterday that daytime sleep is no exception.  I woke myself screaming “No No No!!!!!!  ” In a fit of fear while I was being buried in the dessert sand .

I’m sure, certain, my neighbours heard me.

I had an incidence like that while at my daughter’s house; my grandchildren were terrified and ran upstairs to their mum and dad.

My daughter’s ran into my room, she was really scared.  I was lucid but not lucid. She stayed with me until I was completely coherent.  She was so scared she wanted to call an ambulance.  It was horrible.

I’m not sure how long I was screaming yesterday, but trying to pull myself into the real world from that lethargic state took a long while.

Arrrgh.

I’ll ask at my next appointment for pain management and exercise ideas.

The time that I spend down just takes more of my life away; time away from my family.  It’s annoying.

I know this bloggy entry is way more personal than most, but honestly, it’s part of my journey.

Perhaps it will give a bit of insight to carepartners, perhaps it will let those going through the same let them know they are not alone.

Thanks for continuing to stick around.

Stay well my friends xo Jan

I couldn’t find a song that has a theme with this bloggy thing, so….  Here is a plain feel good song. Enjoy!

https://youtu.be/MDtAuLwa0ZE

https://www.dementiaallianceinternational.org/