I have forgotten when I last wrote, there is a lot of reasons that my writing is becoming more sporadic, but mainly because my brain has been needing to rest, a lot of rest. My brain once again feels like if you peeled open the outer layer of skin, lifted it from my forehead and peered in you would see a very bruised brain. That’s how it feels right know, very tender and bruised. Don’t know of any other way to describe it. When my brain hurts, things become much more difficult to manage, simple tasks remain undone, or I try to do them which leads to anxiety, and boy oh boy to I feel for people who suffer anxiety, it’s a new thing for me, and I knew it was awful and difficult for people but until experiencing it had no idea how difficult.
A dear friend and fellow advocate from Singapore recently posted a slide that perfectly describes what is happening for and with me at the moment. Emily Ong, thank you for allowing me to share this here ( picture below, thank you for all your advocacy work, you truly are a blessing to us all, I am so glad I got to know you, mentor you and form a friendship with you. We need many more like you to step up and get involved in advocacy as so many of us just by the nature of our disease are having to slow down.
This is what I have done to my brain, again, it’s what I do when I am on a good stretch, I overload and overwhelm my brain. It crashes, I crash, it forces me to go quiet, it says no not today, maybe not even tomorrow, it lets me know. And it truly is like a computer that is running slow or crashes, too much open, you have to go in and clean it up, but with our brains that are trying to manage a disease, cleaning it up only happens when we allow it to rest and recharge. Recharging takes longer each time, push to hard things like TIA’s happen.
Speaking of which so during this last spell, something unusual happened, my dog, who normally just curls up beside me at night and goes off to sleep for the night and stays there till morning, but on this night, she started pushing at me, until finally because I wasn’t responding as she wanted, she jumped on me started pushing her face onto mine until I opened my eyes to see her peering into my eyes, with a panicked look, she would not stop until I moved her to the side and actually got up, so I believe either a brain event happened and she was aware or I stopped breathing and wasn’t restarting as I should. That happens with severe apnea, one day ( if I am lucky that will be my out from this world my brain will just forget to send the signal for me to restart breathing.), Can’t think of a more peaceful way to go, but don’t think it will be for awhile, but then again one never knows. Anyways she is so very in tune with me, and somehow I think it keeps her going, looking after me.
That was likely the result of me overloading my brain and it’s easy to do because when we feel at our optimal best, we want to do everything, so we try, lots of meetings, lots of writing papers, speeches those kinds of things, a lot of advocacy work. Plus a lot of trying to do all the fun and joyful stuff. The trick is that we have to come to a place where when this happens we have to readjust, re-adapt, and make a new plan of how much and what we can manage, accepting it is part of the process. Allowing and knowing it’s Ok, to take breaks away from everything, all the stuff that is overwhelming your brain, away from screen time, tv time, meetings, all of it. Turn on the music let it soothe your soul, let it calm your brain. Rest is more than OK, rest is the only thing that allows our brain to recharge.
It’s a hard battle within ourselves, because we want to do so much, acceptance doesn’t always come easy, and sometimes our brain itself, after all it’s in control, tries to trick us by sending messages that make us feel as though we can somehow use super powers to continue doing things.
I am continually learning, ( yes people with dementia can and still do learn, and understand things), so I am continually learning about how intricate and fascinating the brain ( my brain) really is. I have learnt to have a great deal of respect for it, to try to uphold the fact that it needs to be looked after, brain health is important. I wonder why we were never taught these things during our formative school years. We should teach more about the health of our bodies, brains, more about nutrition, the importance of rest, all of those things are lacking in the education system.
A dear friend of mine, from Vancouver Island was here yesterday we met for a good visit and catch up, her move to he island was recent and I am so appreciative that each time she comes to town she ensures we get a visit. I like that I don’t have to try to be ” normal” that however I show up is ok, I like that she calls me out on things, like we were taking about my brain ” letting me down” ( truth is I Have been letting it down by trying to force it to do more than it can manage at this point), yup she reminded me of that, she reminded me to give my self a break, she reminded me of how much I do actually do ( another thing my sister in law also reminds me of so often, how I often don’t feel like I am doing anything or enough of anything, when in fact it is just that my brain is not remembering what have been doing, and I forget that I forget…good grief it is complex isn’t it. So I so appreciate the visits and the reminders to be gentler with myself. I tend to be very hard on myself, a left over trait from the former me. One of my other friends stopped by because he said he had messaged two days earlier and I had not answered, so he came to check on me, and said, “I Think your brain is not working very good right now.”.yup the friends that get it, accept it and understand it are my hero’s. It’s easy for me to miss things, for time to lapse, because I have no concept of time anymore, so just being accepted in whatever my day is like today is worth more than words can say. That they put in the effort to stay connected share laughter and tears, and find joy doing whatever with me, knowing that I may not always be able to remember to reach out. So very grateful, So very blessed.
Sunday night I am going to see Jesse Cook at the Performing Arts Theatre, the tickets were a gift my friend from the island, music is really great for people with dementia, he is an amazing guitarist, my friend Marijon will join me, I don’t generally do evening things, but for special things, I work on revamping my day to allow for the event. I am so looking forward to it. I haven’t been out to anything for a long time and as we discussed yesterday the timing is likely perfect because it will soothe my bruised and sore brain.
I have my speech ready for my meeting with the Minister of Health Canada, next week, looking forward to that. Again a lot of brain power used for it’s preparation. Hoping good things come from it.
So as we head into another weekend, another week that has gone by, I feel as though I am somehow in a race against time, so its hard not to put pressure on oneself to try to do all the things I would like to do before I no longer can, but reminding myself to pace it out perhaps one main project a month, learning a different way so that my brain can have an easier time as we march along this path together. I hope you all enjoy this first fall weekend.
Chrissy's Journey 