Good Morning to you! As always, I hope you are safe, well and happy.

This morning was a good morning; one I have grown used to over the past few years.

I fell asleep at around 5 or 6 pm, woke up at midnight. I made my way downstairs, went out and sat on the front porch for about an hour, wrapped up in a fluffy housecoat and sat in the cool breezes. It was lovely. I wake up / get up usually, around 3 or 4 a.m. so 5 p.m. is a long day for me.

To be clear, waking up and getting up are two different things.

When I wake up, there is no going back to sleep, but that does not mean I am getting up. Each day is different. This morning at midnight, I got up; but when I went back to bed, I did not sleep.

Its a strange thing this Alzheimer’s. I can be awake for hours and never open my eyes. Its not like my brain is full of thoughts and ideas or than I am overwhelmed with emotions and angst, I’m just here, awake, not sleeping. Time floats by, no rhythm involved, no internal clock ticking away, no desire to do things or finish tasks, time just passes often feeling it has been 20 minutes but in reality it is 4 hours. It is amazing. I am calm, rested and unworried. Eyes open or closed, it doesn’t matter. It is the most wonderful part of my journey and I love it. I hope this part of it all never changes.

I suppose if I were still married or had a partner in life, those moments may happen outside of my bed; I believe I would have a concern of waking the sleeping beast or being annoyed with the “sleeping noises”, LOL, ( I do not miss that at all !!!!) , however, as I am alone and sleep often across the width of my bed, ( weird, I know) I remain comfortable and relaxed in all the moments as time ticks by.

I have recently added a “wedge” of sorts to my bed. At the top, where your head lays, I added in some height. It is a long, slow incline wedge of sorts, allowing me to sleep comfortably and slightly above flat. The incline starts just under my shoulders and raises me up a bit. I placed it between my mattress and the foam topper, it is awesome. Between my new hand rail and this incline wedge, I can sleep more often in the “correct” top to bottom position. With saying that, My mattress is new, top of the line, it is NOT uncomfortable at all; I just find that now, I need numerous pillow choices, numerous sleeping position choices too…… so I make sure I have them all.

As I said, I went back to bed after about an hour earlier this morning, i stayed lying in bed, until 5 am., not sleeping, just still. I got up out of bed, once again made my way downstairs, it can be tricky for me but I manage, made a coffee, went out to the front porch again, sat and watched the sun come up, listened as the birds began to sing, then started writing this blog on my phone.

It is now almost 7 a.m. and my granddaughter will be up soon so I should make myself another coffee while I wait to hear her singing a song and we can spend an hour or so together cuddling and singing together; I have been awake for 7 hours, staying awake till 5 p.m., well, that’s a long day for me.

Additional edit: I didn’t finish this entry in one go, I got busy. After my granddaughter woke up, we sang songs and danced around, I hugged my oldest grandkids as they came downstairs; my daughter and I took a car ride and sang songs LOUDLY while driving around and dancing in our seats, then a masked stop to pick up a few new summer tops and a bird feeder so we can watch the birds early in the morning; I sold a 1940’s dresser that I had revamped to a woman who is driving 3 hours one way to come and get it ( I am honored, my daughter posted it for me and is doing all the stuff), I climbed a big hill with my granddaughter and she yelled, “Grammie! I climbed a big mountain, we are big!!!!!” ( there is a big dirt mound across the street from us, it has wildflowers growing there, my granddaughter picked flowers and we bounced around) we blew bubbles and waved our bubble wands in the wind; I had a campfire meeting ( https://www.dementiaallianceinternational.org) with my pals, it was great, asked for advise on sleeping and chatted, it is an additional get-together during COVID19 to ensure everyone is staying well; listened to music, danced in the livingroom with my family, helped with dinner ( just a bit) and was in bed by 6:00 pm. It may not seem like much, BUT, I was up at midnight.

Next………….

You can’t help being your own Lab Rat cause if you sat and waited for a true cure or course of reasonable events to be laid out in front of you about Early Onset Alzheimer’s, you’d be waiting way too long, I don’t have that kind of time.

In a previous entry of these (maybe a few entries) bloggy things, I told you about the natural anti-inflammatory I take, Serrapeptase, that whole thing was one of my first Lab Rat attempts. I took it because I was getting random things, health things, happening in my body…..medically explainable and unexplained things, one time events, one month events, weekly events, every now and then events, and test after test showed nothing OR it showed no longer an issue, no rhyme or reason, it was annoying , however, it was the beginning of my Alzheimer’s, the beginning of the stage before diagnosis. ALL illness starts from inflammation…..somewhere in the body. Since my Doctor couldn’t pin-point it, I was going to cover it all.

Unbeknownst to me, it was helping with Early On-Set Alzheimer’s, ( I didn’t know I had EOA) and stopping or slowing all the other related inflammation happening as a result of EOA. Pure Magic in my view. I think, sadly, as this disease has progressed, inflammation is winning in part.

Although Serrapeptase is a natural substance, I still have to be cautious. The additional nerve pain I have experienced, the agitation of the nerves, has added (possibly) inflammation in a different way, in different areas. Welcome the additional Lab Rat session, CBD oil. I have re-balanced the “natural source” things over the past few weeks to have things work better. Adding one means taking away some of the other.

My Doctors are good with me doing these things, they are fascinated with my results, my neurologist is studying one the properties and effects as a matter of fact. There are many other RAT sessions mixed up everyday in my life as well,it is a necessity of LIFE WITH EOA.

If I had liver damage, a specialist would help to heal me, kidney failure, same thing. When you have Alzheimer’s, its a lonely street.

Doctors study you, that is all. Treating you is a “clusterf*ck” of epic proportions. There is limited medication, limited time you can take those medications, and they only slow things slightly; there are additional medications , all only for masking what is happening; there is LTC, Assisted Living, In Home Care, Occupational and Therapeutic care, FAMILY, Love, Dancing and all the Laughter…… but there is no cure.

I research the things that affect me. I do not blanket this disease although millions of people live with this same disease. Just as we are all different as human beings, we are, for a long time, different in the way our bodies go through this.

I do not know of one person who has this disease that does not do everything they can to live well. There is a self created Lab RAT in all of us.

Everyday I still struggle with eating ( I just plain forget even with prompts), taking my medication on time or making sure I don’t miss a dose, walking, climbing stairs, sleeping, pain, exercise, executive decisions and functionality……. and so much more, I do my best not to complain and I always fill you, and my family in on changes.

Struggling through? Nah. I’m living. We all face changes in our lives.

A few SIMPLE things to get you through your day:

1. Meditation: Spend time in silence, simply listening.
2. Hang Out with nature: Aim to get at least sometime outside every single day.
3. Creativity: Tap into your internal artist by drawing, writing, painting, or making music.
4. Learn to listen: In general, listen to friends, families, silence, and most of all, your instinctive self.
5. Be body aware: Learn to appreciate and read the little signs and signals from your body daily;
6. Let go: Warm up to the idea that you don’t have to control everything. Life is going to happen. Relax.
7. Stay positive.

Stay Well My Friends xo Jan xo

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