Days now can be so complexed. My soul stands true with yours.

I live alone.  I love it, but I’m not gonna lie, it can be hard.  Depending on someone ( myself) who’s actions, although reasonable but often not patterned,  is daunting.  I can laugh with myself alot, but it gets old some days quicker than others. But I still laugh, often loud lol!

Being so young, that is hard. 

For those of you reading this who do not have EOAD, there are millions of us.  Statistically, however, we only make up 5 percent of those living with Alzheimer’s.

We are the friends you have lunch with, the friends you vacation with, and your friends in your neighborhood, your coworkers, young mothers and fathers, we are your brother’s and sisters.  In some cases, we are the friends you have forgotten.  ( Jagged little pill right there)

We live with so much more than memory loss, it’s not all about memory.

For most of us, at first it was that uneasy, innate knowledge of knowing something just isn’t right.  Moving forward, combine this with physical pain, worry, bouts of anxiety……some have never been able to rid themselves of that anxiety, it is now part of everyday living for so many. So much more than memory.

It’s new routines.  The dreaded new routines.  Our brains have rewired themselves for years without us knowing. But now we know.  Now we understand why we do were doing things differently.  The knowing “why” is always bashing at our hearts. Imaging having that knowledge and trying to be ok with it. ( And when I say things I mean,  a plethora of things). We change our lives daily. Everyday in every aspect. Daunting.

It’s social behaviors. I myself was quite social.  I loved meeting new people, staying in touch with my old friends.  During my search for answers, I slowly pulled back, dropped out in a manner of speaking.  Many of us hate, can no longer deal with,  the simple act of grocery shopping.  The last 5 years of my career I audited all the major grocery, drug and big box store chains here. Now, I cringe at the thought of the lights, noise , high ceilings and ever-changing shelves. But I need to grocery shop.

Forcing “a place for everything”. Habits.  Arrrgh!  If I have to create one more “habit”  I’m gonna scream!  On the flip side, if I can’t find my keys one more time, I’m gonna scream! It’s a strange balance.

Pain.  This is something Drs never let you know about.

Getting ready to go out.  Are you kidding me? What in hells name has this become?  It’s like pulling the wings off a fly and throwing it in the air to see what it will do.  It takes me HOURS! And once I’m ready, I’m exhausted. I don’t want to go ANYWHERE. 

I’m glad I live alone during these events.  I need to take my time, not be rushed.  Let me tell you how this goes……
I do my makeup in sections of time, hair & clothing  too.
I cannot stand in the bathroom getting ready, I need to wash my face, clean the windows, put cream on my face,  have a tea, put on  foundation,  make my bed, sit and read, put on eyeliner, fold my clothes, wash my dishes, change my mind,  put on mascara, read my emails, put on lipstick and tie my hair up, choose clothes, lay down, find socks and choose shoes, call my daughter, check the weather, change my mind, put on perfume, video chat with my mum, vacuum, get dressed, change my mind, sit down and do nothing, look at the time, wonder where it went, find my goddam keys,………….  Be on time. 

Sometimes I just wanna say, I’m late. I sat staring at the wall for 39 minutes, in a towel.

Change after change, symptom after symptom. Every. Day. Living.

If you sit back and think of all your loved one does JUST to spend a day with you, you would be humbled.  Humble yourself.

To all my Warrior friends.  I got you!  I stand with you through our young ages.  A great friend of mine often says, Together we are stronger.  We are. Strong, capable, loving, living human beings dealing with unimaginable change.  We accomplish, we succeed, we endure.

My life is crazy sometimes.  I still love it.  I don’t kick myself for the craziness, I embrace it the best ways I can.

Some days are best spent in bed. I love my bed.  Make sure you have a comfy bed with lots of pillows to choose from,  big fluffy blankies and weighted blankies. Sometimes you just need a hug and when you live alone, heavy blankies add comfort and security.

Being so young and living with a disease of such magnitude, a disease not one professional truly understands, can be overwhelming. Is overwhelming. 

Our experiences are painted together through each others stories. We rely on our ability to connect through in person events and most assuredly, our on line families.  Virtual campfires. ( Dubbed by my online family ❤️)

Staying connected is not always easy, but do your best. It’s important.  Share your stories and reach out to others struggling in their day. Send love and kindness and reap the warmth given by others.

On those days that this takes so much out of you and all you did was hold yourself together, I am so proud of you.

Please listen to the song below. From me to you. With lots of love. Xo

https://youtu.be/5LWpw3CMCEg

Stay well my friends!  Jan