KEEP CALM AND TRUST THE PROCESS
Post 45 - Saturday June 8th 2024
Being here at Camp Recluse has made a significant impact to my depression and Lewy Body Dementia symptoms. This place is very calm, very relaxed, and I can see the positive changes in my day-to-day functioning. I am in a much better spot. So much to love about being here living off grid, yeah, I am finding it is fine to trust the process.
What that means going forward I have no idea but for now, this will do me.
It can be lonely I guess; I am really keeping to myself. Look, I do go to town with Ruth to the shops sometimes, I have met a remarkable local bloke, Hermit Bill, and we do have some great conversations. He is just a genuinely nice bloke, has a great view of the world and is happy to have a chat but like me, he values his alone time. So, I can have as much or as little human contact as I wish.
And I have a chat with Farmer Bill when the opportunity presents, he looks after the sheep in the back paddock and drives around the boundary fence from time to time, so a chat across that fence is possible. He too is a long-term Ararat local who enjoys what the town offers him and his family and is happy to share his stories. I like the bloke.
Ruth and I still have fun, we have great banter and many laughs, we do complement each other in this off-grid world. We both write, we love nature, and we definitely love all the critters of various persuasions who have joined us here at the camp. We have taken in a number of the locals, well, wildlife locals and Ruth and I love to care for our critter friends.
We both have interests that can be done as a couple or as individuals.
In the 35 days here at Camp Recluse on our Adventure before Dementia journey we have had a day trip to visit family in Pyramid Hill, we have had a coffee date with Jason here in Ararat, a good mate and friend, he was in town on business and made contact. Ruth had her 64th birthday here on May 31st, we celebrated in Camp Recluse style sparing no expense on a KFC birthday lunch. We pigged out and enjoyed the celebration.
Then naturally we do get to chat with other campers here at Green Hill Lake, although for me, I keep that to a minimum. I am not being anti-social; I am just needing my solitude and I need the peace and calm that this place offers. It is such a good fit for me to be reclusive, because as said, my mind is in a much much better spot. And I am really embracing that.
And on an awkward note, I have had a few inter-reactions with people where my mind is blank and I cannot understand or stay in sync with the chat, I do go quiet and look empty and for me, I do feel like crap in these moments, I feel very embarrassed that I get lost in thought and conversation. So, right or wrong, I do try to avoid being in a position where I have to engage someone particularly when it's a meeting with folks at random.
Yeah, that's why I go back to that solitude thought, I am ok being reclusive and I feel safe in my mind being, well, reclusive.
On Thursday of the previous week I did have to go to the Ararat Hospital for my next set of scans. That was not easy, the hospital here is big meaning the medical center appointment was confronting to me because having to manage reacting with a different set of clinicians was daunting. But on a major plus note, my Urology team back at Flinders Medical Centre in Adelaide were so helpful in arranging for me to get the scans done remotely here in Ararat. They allowed Ruth to organise appointments and for her to tick off making the Ararat Hospital connection. That was, as said, a massive plus. Now the Urology team will arrange a phone consult to discuss the scans and then any action as to what happens next will be discussed.
The scan involved a dye/contrast so a canula is stuck in my arm to accommodate the dye/contrast being pumped in and that is always traumatic for this 69-year-old wuss. I do not do that part well despite having had it done so many times over this long period with my health issues. Being moved in and out of the scanning machine on an automatic slide as different scans are taken did cause me to tear-up, I was a touch lost in my mind and I felt lost physically and very vulnerable. That part was really tough going. Look, the radiology team did allow Ruth to stay with me for as long as possible in the room but once on my own then I did l lose my way mentally.
Ok, now, I said I am doing mentally better living here amongst nature and in this reclusive setting. What is so different here to actually make it different for me mentally and to have an impact on my depression? I have talked about the peaceful and quiet location and all that brings, but what else?
For starters, my sleep habits have had a dramatic change. For most of my life I have been a bloke who did not need much sleep, it was normal to have four hours sleep every day, and I mean every day. I just lived in a hyper space and functioned on very little sleep. That was me.
My first roster was having two 4am starts each week, Wednesday and Friday so shift work was generally a part of my working time from a very young age. The two mornings a week with 4am start times became four days with the early starts after about the first 12 months.
So, with never a lot of sleep I was entrenched in the work force, and I never felt the need to have beyond four or five hours kip. As my railway days continued, I moved to the locomotive side of the SAR and that meant continuous shift work rosters so start times and sleep patterns were very jumbled. Once I left the railway work after 10 years and had a change in career, the shift work with early starts continued and I never really took on the need for any different sleeping routine.
Hence, the need for just a few hours' sleep was now how it was. And as life rolled on the pattern remained, I functioned fine for 50 plus years needing very little time in my bed. But now that has changed significantly. I am finding I sleep for lengthy periods at night, eight to 10 hours is now common. When I was so unwell after my cancer surgery last November then I did sleep plenty and as the depression became a problem earlier this year, I spent many hours napping on my bed.
But this is different. This is deep and meaningful full-on sleep; it is foreign to me. Again, I guess trusting the process and knowing my physical and mental body needs sleep is a key to battling on.
And this sleep pattern change has another major plus side. This bit is rather difficult for me personally to write as it is a dark side of the LBD journey, I am not overly confident in adding this to my blog. For much of this time with LBD I have suffered from hallucinations, awkward and disturbing hallucinations.
And wow, I mean disturbing.
Ruth and I have dubbed these hallucinations as 'The Bad People' because they become extremely intrusive in my mind and talk all sorts of bollocks. They were very real to me at the time, and I have conversations with them that are often out loud and quite dramatic. The voices are very dominant when present and they get very pushy in telling me what to think and what to do. The voices have no physical shape, they are just voices although on occasions I have seen shadows or even an image out the corner of my eye.
The voice connection happens mainly at sleep time and that of course makes sleeping more difficult. Sure, they also present sometimes when I am awake but not anywhere near like they do at times of sleeping. I do talk in my sleep in conversation with the Bad People and Ruth will tell me later how that conversation went. Most times I have little recollection as to what those conversations were other than remembering they were very dark in nature.
And a further downside with trying to sleep when the hallucinations happen is that it makes you reluctant to drift off because of that dark nature of what is being said. They are not dreams I have but real voices I hear even though I generally don't recall the actual conversation.
It seems the hallucinations are a part of the LBD symptoms and apparently, they are a rather common symptom. That is of no consequence when trying to deal with them and knowing they are part of my LBD offers no help. They are really dark and so very darn annoying.
But somehow this was all flipped on its head and now nothing. There are no hallucinations, nothing for the past fortnight or so. They just went away, totally gone, I did not see that coming. Not sure why or how this happened, but things have changed. And wow, how good is this, I can sleep and sleep without my mind giving me grief and that is something I can learn to enjoy.
Maybe my understanding of being in a better head space here at Camp Recluse is the answer to why they stopped. I do know that living here I generally feel much better mentally. The solitude and serenity this place offers do make for a much calmer lifestyle, and I have embraced that. Being a recluse comes with advantages in many areas for me and this hallucination issue ending looks to be one very important change.
I mean, I sleep longer now so the reverse side of that is I am not awake for the number of hours I was for the greater part of my 69 years. That is ok, different I must say but ok. I still seem to get lots done even in less hours and maybe, I am more relaxed by not being awake for such long periods each day as was always the case. So many awake hours allowed things to continually go on in my mind, round and round, overthinking, over stressing, over sharing and having a head full of personal doubts.
Halleluiah, either way, this sits pretty well with me. Yep, I've changed.
And for anyone who knows me will understand I DO NOT do change WELL but, in this situation, change was for the better. So, on a lighter side to keep the peace with myself on the change concept, I will run with this thought. I didn't change, I just see things differently now. And I can sleep as long as I wish.
Ok, that's enough sharing for now, again that went on a bit didn't it, but in my defense, it was a good and important move for me in shedding some of troubles from my LBD cognitive affected mind. Sort of like a mind declutter.
But this post now comes to an end, that's it folks. Thanks to everyone who reads the blog, it is great to have you all in my corner. Close to 27,000 views on the JonnyG Remembers blog.
And as happens, I will leave you with a word of wisdom from JonnyG ...
The big advantage you have with talking to yourself is that at least you know someone is listening ...
Hey John and Ruth glad your enjoying the serenity keep the blogs coming. Love reading of your life xx
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