I HAD SOMETHING TO SAY BUT NOW I FORGET

Post 15 - April 2nd 2023

The times they are a changin' ... but it's still fun

A recent five-day road trip to Victoria was a ripper. Ruth and I headed over the border for a couple of race meetings, firstly Warrnambool and then Avoca. We had a horse running at each meeting adding to the trackside entertainment. All great fun, no winners but 2 great days of racing.

We had planned touring and camping out as part of the retirement gig but sadly some personal and health issues presented and any idea of heading off on the road long-term was dashed. But we have been fortunate to continue with our hit and run road trips and that has filled a travel void.

So, to get a five-day trip was a bonus. We had the race meetings as center piece of travel but were able to test the waters with our camping thoughts and that went perfect. One night at Baileys Rocks heading to Casterton and then three nights at Green Hill Lake near Ararat.

So much to see out there particularly at night including a very inquisitive possum I named Paul. He liked to be a part of the camp atmosphere. And a wallaby named Walter who came to share breakfast with Ruth.

For me it was simply a blessing. The chance to set up a camp was a test but gee, it went perfect. Loved the time.

However, it also had some testing times for me with this Lewy Body Dementia awkwardness. Hey, I am doing ok generally but sadly the reality is things are progressing down a path that is really testing my resolve.

I had some rather horrible LBD moments while on the trip, moments that have been creeping into my everyday living. They are sadly mounting up.

Confusion was at the head of the list. I am struggling at times to work through where I am at. Not so much physically but struggling to get my mind to adjust to a situation when I am disorientated in thought and that leads into being mentally blank. I simply cannot get a fix on what I am doing or importantly for me, where I am at.

Sometimes I can hit back reasonably quick, other times I need to really concentrate in an effort to make any sense of where I am at in my mind. Being blunt, I am lost in my own head. And because I am lost in my head then that equates to me having little or no idea of where I actually am.

It does not necessarily mean I am lost, it is more that while I can figure out my physical location I am somehow not then able to translate that thought into knowing why I am there in that place and what to do next. Some call this a senior moment, but for me it is all encumbent in this LBD journey.

My mind is struggling to identify what the dickens I am doing. So I just stand and become distressed in part because it is really awkward to not identify in my mind why I am where I am and what I am doing in that spot.

I imagine I look fine, probably look like I am on top of my game but wow, for me it is really a distressing moment because I cannot figure anything out in my head. As said, at times I come back into thinking mode reasonably quick, but the moments of confusion are starting to extend in time when I find myself in this total blank mode.

And once I have regained my composure and my self-awareness returns, I get really disappointed in myself and that leads to emotional distress because at this point, I am aware of what just happened. I am really struggling with knowing that.

An added source of distress is the fact that accumulatively these blank moment episodes start to add up and what that is doing in me is it is destroying my confidence, It has me almost scared to do anything in certain settings. I obviously do not wish to be exposing myself to potential harm or embarrassment when I am in this state of total blankness.

So, to play safe I am at times avoiding certain activities particularly in a social setting to save myself from this potential embarrassment of becoming lost. That in turn hits my personal confidence for six, it is somewhat soul destroying.

In fact, as I am writing this it is mentally distressing and upsetting to be sharing these thoughts. For me, to know I am losing control of my mind is really bloody crap.

Because the real sad part of this LBD is knowing that one day I will be lost to myself.

That is really very difficult to get a handle on, it is a spot I literally hate. Knowing where this journey ends is totally devistating. Right now I am in a holding pattern, doing ok in the minute yet looking ahead, where ever ahead might be in terms of time then sadly I know how this plays out. That sucks.

So, emotionally I am cooked right now. I will need to take a break from writing this post, I can get a coffee, have some chocolate, go talk to my chooks, have a sleep and try to get back into a better frame of mind. Sorry.

Ah, as if right on queue the sun came up this morning and my mind is in a much better place.

I know as you read this you will not know how long my break from writing this post was and I'm thinking that is not important. What is important to me, is that right now after a break I am thinking much more clearly and that is a blessing.

One of the conundrums of my LBD journey is the huge divide between the good and the not so good moments. The fluctuations in many areas are enormous. Right at this minute I am rolling with life, feeling good and knowing that I still have a lot of good times to come.

Look, the bad head space times happen, I just need to look at them for what they are and stay positive, I need to remember that they pass and I come back feeling ok. Naturally when the bad and sad times happen it is hard to see the forrest for the trees, and that is ok.

A strategy I must clearly learn is how to better cope in those crap times. Maybe in essence I need to experience them to in fact be able to learn how to navigate the journey ahead when they occur. Tough to do but important to do.

And another issue to sort through in the awkward blank times. Ruth shared that she notices my peripheral awareness of things happening around me is diminishing. Things are going on that I am simply missing. Ruth points out that in the past this has been a huge strength to me, I am, or was, super aware and super heightened to all things happening in my space and beyond.

Again, a strategy is needed to help when I experience these times.

Ah, so much to learn. But we push on and will make the most of the journey.

That will do for this post, thanks for checking in … footy, I have no words ... Go Cats …

And now for a JonnyG thought … as if life is not confusing enough now this LBD health issue adds yet another set of problems … or is it just the way life is? ...

The waiter at my local Chinese restaurant must think all white people look alike, he just gave my food order to the wrong customer … no, nope, wait, just wait, never mind, that's not my waiter

Walter and Ruth share toast for breakfast