Author: WWW.Chrissy's Journey.com

Yesterday my doctor called, back to the lab for more tests, sometimes it feels like my life is about appointments, But this is life for many with Dementia, so many underlying health matters. It’s a tangled mess, but at least they try. I will be happy when antibody testing can be done, because I have been sick since March, a few good weeks in that time but more time being sick, feeling like my body is attacking itself, and sometimes I ponder how much is simply being blamed on my dementia because that’s always rather easy answer. However I do have good doctors and my GP I have complete trust in.

so what does that have to do with finding my happy, well I could become despondent or depressed feeling sick so much, but I don’t because I focus on the good moments in the day. I still attend meetings, still present speeches and contribute to the research groups I am part of. I’ve been doing a “ one thing a day” for a while, as my fatigue means my ability to maintain enough energy to do more is not there. But I celebrate what I do manage, and yes I am human and sometimes every once in a while, I get angry, mad, frustrated, because there is much I want to do but my health is hindering me.

So finding my happy is extremely important, and it’s important for everyone, especially during times like those we live in, so much uncertainty for people I am fortunate my mother instilled in me from the time I was a tiny girl that when everything feels out of sync, when you are having times of troubled waters, you need to keep busy. Keep your hands busy, it will quiet your mind. That’s how you find your happy, get busy doing something, do something that has some normalcy to it. Teach yourself something new, something as simple as cleaning out a drawer or closet gives a sense of satisfaction and brings calm, we feel good when we complete something.

So yesterday, I tackled a project, I recovered phoebes window seat, another small bench, a chair and foot stool, and have cut out cushion covers to coordinate, I’m going to change my space around, make it a happy space for winter. This brings me to that happy place.

So even though I don’t feel well, and some days are worst than others I’m always finding ways to bring joy to my life, and it may not be perfect but I did it, that’s what matters.
So during these days when everything around you feels uncertain, and I have to tell you those of us living with Dementia spend most days feel like we are walking on quick sand because everything is uncertain for us all the time, but we are always striving* to find our happy, so get busy and you can too.

I was reminded yesterday during a conversation that sometimes we are fighting so hard for each good day or moment, that we are always looking for the silver linings, looking for the things we have to be grateful for. Yet somehow in all of that the one thing that I have forgotten to acknowledge and give thanks for is my body.

Yes, this broken, often unwell piece of equipment, and I, like I am sure many others when giving thanks for things forget to give thanks to our bodies. For all that it manages, if we think about it, I may not be able to multi-task any longer, I may struggle with a lot of day to day things, but if I stop and look at how much my body has to multi-task still even though it’s broken and hurting, not only from the Dementia but all the other things many of us with dementia have that complicate things even more, like cerebral vascular disease, hypertension, a rare type of angina, and on and on it goes.

Amidst all of this, while struggling with the Dementia that is forging in my brain, the magnificent brain is still multitasking every single day, keeping all those parts running, and maybe they don’t run perfectly anymore but none the less it runs. It runs well enough that I can still sit here and write, it runs well enough that I somehow make it to meetings and give speeches, well enough that I managed to write a book.

Perhaps I miss appointments or get the days and times wrong, perhaps, I make more mistakes, perhaps I can no longer multi-task, but while I am not my body is. I have ( or my brain has) given me the tools to adapt and adjust my life to keep running, maybe not in the fashion it once did, but I am still here and I am still standing.

So should we not take the time when we are thinking of all the things to be grateful for when we are giving thanks for so many things, should we not be including thanks to our bodies. For it is in fact the very piece of us that is broken, our brain, our bodies, that somehow are still doing all the work, to allow us to still be here.

So today after a very short one day reprieve from pain as I am sitting waiting for my doctor’s appointment today, after another sleepless, exhausting night, trying to manage the pain, I will be saying a thank you to this body for allowing me another day. Another day that I can write, spread kindness, share joy, enjoy friends and family, yes today exhausted or not I am here because my body is deciding to keep running, maybe not on all cylinders but it’s running, and that’s a lot to be grateful for.

It’s been a bit since I’ve written, but I’ve had to give myself permission to scale back, to think differently than I normally do. It’s hard when we have conditioned ourselves to expect so much from ourselves, we can’t blame anyone else, we can’t blame society, we have taken it on. We have placed huge expectations on ourselves to complete everything we’ve felt necessary to do and attend. We would never put those expectations on anyone else yet we do it to ourselves.

Why I wonder do we tell others to take it easy, to look after themselves take all the time they need and then in the same breath berate ourselves for not managing to do it all or more.

We are driven, we are passionate, we want to feel like we are contributing to our lives to the lives of others to things that matter to us.
Many of us with dementia often talk about how tired we are, but we keep pushing to show up, to support the others we care about, to help drive change that is long overdue, we sacrifice ourselves, our own well being, because we take our commitments serious, maybe because we are working so hard to get others to hear us and take us serious.

Often groups and organizations that are working to make things better for those with dementia, to include us, ( some use us), who talk about ensuring that changes happen to make things more dementia friendly, when in fact those very same organizations ask us to attend and participate expecting us to be up at unrealistic hours middle of the night, to make presentations, to participate in discussions, because they base the hours for themselves that work for them, ( they are paid ), they only participate during their working hours. But we who live with dementia and who we know how vital rest is to our rest is, to our cognitive well being, are asked to give of ourselves freely, to put our already challenged well being at further risk, by attending at unreasonable hours.

For use feel like we have no choice, if we want to be heard if we want to help make changes that actually impact us directly we have to be willing to be the sacrificial lamb so to speak. The one thing we must do then is give ourselves permission to ease up when and where we can. It’s hard not to keep high expectations on ourselves.
I have learnt in this past year to do a one thing a day rule. This has come about because in the past year I’ve only actually had about two months where I have felt good. My health has been significantly challenged and continues to be today, many with dementia have many other health factors that come into play, does the dementia make them worse, or do they make the dementia worse, I am never sure and bounce back and forth on that. I do know though that my ability to keep my health stable becomes more difficult each passing day. so I have taught myself to be happy to make it and attend one meeting, or do one thing like clean put my spice cupboard, one thing a day, somedays I can’t manage that, but if I miss a meeting, if I miss a support group, I no longer berate myself, make myself feel worse. I remind myself that I do live with a terminal illness, that today I’ve done pretty well. Today I’m still here, I’m still smiling, I’m living only for today, and that’s enough.
It’s important and maybe more so right know with everyone dealing with this underlying stress of living during this pandemic that we remind each other it’s ok to say not today, it’s ok to not put that extra pressure on ourselves. Give yourself permission and give those around you permission and encouragement to take care of self. That is truly how we will make it through these very turbulent times, and maybe just maybe on the other side of it, we will see the change we all know is long overdue. Maybe the silver lining is that through it all we continue to learn and grow, despite living with what is still previewed to be the worst possible illness to end up with, yes maybe the silver lining is that we indeed are living each moment much more than we are dying. Maybe the world could all learn if they did like us and lived like they were dying.