Caring Bridge - February 2020
Caring Bridge Journal Entry by Michael — February 6, 2020
Breathing ...
Healing ...
Determined ...
The lows and highs over the last couple months has been difficult. I have been incredibly overwhelmed at the love and support around us - who have selflessly helped us in this difficult time. I am speechless and thanks seems no where near enough what we get from everyone - thank you!
There's been a lot of reflection. It's hard not to have those negative and difficult thoughts to come in. That's just being honest.
Thing is: I let it happen.
I'll let it happen.
It's choice.
It's a choice I make because: it's there. Not really going anywhere. We can't run away from the realities that are discouraging us.
...it doesn't have to define us either.
I embrace the great test results and breathe easier at the next favorable exam ... I'll use those things to build on making my body better, doing better, improving how I am and work together with the infusions and medication to ensure we're doing what we can. The positives are - simply great!
Keeping the negative stuff holds me in balance. To not take things for granted and to keep working on making my life better. But it's there and it keeps me in check. That's a good thing. It motivates me.
So - it is a balance mentally. On weeks like this - where I had rough time. My stomach and innerds haven't been on the same page and that caused the energy level to drop.
...and that's where the hard part comes in: when the energy level just isn't there - it is harder to embrace the positive path. I want to go out. I want to walk the mall. I want to do this, that and the other.
...except you can't. The body doesn't listen to the brain at this point and the brain gets frustrated.
"Why don't you just go to the mall and walk what you can?" Answer: spoons. (Link: spoon theory) We take it for granted, but we lose spoons when we ... take a shower, dry off, get clothes on, groom ourselves ... and we spend those spoons without even noticing. My spoons drop - like crazy. So even just taking a shower - afterwards spoons are falling out now like a river ... and I need to find a seat soon or I'm going to collapse to the floor.
I took it for granted for all my life. Take a shower, groom, get dressed, up and go! 30-45 minutes easy peasy. Now? Not so much. I need planning. I need to check my spoon level all the time to see what I can handle. Right now - I can do a shower, groom, get dressed no problem. I take the shower - spoon depletion majorly. Now I need to sit. I have to groom sitting down. Breathe. I'm running out of spoons - getting dressed .. and now I need a few minutes to get caught up again.
And that - is my daily routine.
My body reminds me what is going on - and that weighs on my positive attitude ... and we begin again.
I know this was going to be a slow process. I can say I'm so much better than I was in November. SO MUCH better. Yay! I'm able to do some stuff. Positive! And that gives me a boost.
So - it becomes a mind battle. As in real battles - there are good days and bad ones ... so we hold onto the things that are positive - and muddle through the best we can. That's why I spend a lot of time watching things or reading what makes me happy or uplifting.
I'm about to bring this to a close ... as I just needed to get the thoughts out of my head. I'm sure more random posts like this will be coming - but I think that does it for now. Many thanks for those that reach out and check in! That means a great deal and please take a moment after you read this - to quietly thank life for giving you for what you have right now. Things can change on a dime and they can broadside us. It's a good reminder to breathe, and remember how cool it is to be where we are in life.
-M
