The pace of this last week has been much slower. The weeks between the end of September and the start of November were particularly full so a little respite before the holidays begin is a good thing. I started another round of Radicava infusions this week which gives me another reason to lounge in bed and watch Hallmark Christmas movies (yes, I’m one of those people!). Actually, it’s getting to the point where I don’t need an excuse to be in bed…it’s where I’m most comfortable and where I spend most of my day…out of necessity. I’m still doing my own self-care (i.e. showering and getting dressed) but it’s slow going and pretty much wipes me out. A couple of trips to the bathroom and back are about all I can handle by myself during the day. My lack of energy is no longer just a nuisance but a real hurdle in me doing the basics.
The gradual (BUT NOT GRADUAL ENOUGH!) nature of this disease is a perplexing process. You’d think knowing what your needs are at any given point would be obvious but it isn’t…it’s kind of like standing near the edge of a fog bank…you see it coming but you don’t really notice you’re in the thick of it until you can’t see a few feet in front of you anymore and all of a sudden there is a frantic need to do something about it. There are some things you can do to be “pro active” in this process but when it comes to certain specifics, you don’t know until you know and that is a little distressing. I am definitely on the verge of transitioning to yet another level of support. Each transition pushes me farther away from what is familiar and into new territory…territory that is unknown, frightening, exhausting, humiliating, territory that requires truckloads of patience & grace as well as a constant adjustment of expectations on every level imaginable. My body feels like it started out in a pool of water, transitioned to a vat of wet cement and now that cement is beginning to harden. It’s happening, I can feel it and there is nothing I can do to stop it. A tough reality to face day in and day out no matter how full or empty the calendar may be.
On the bright side, I am using the extra time I have this week to do some holiday prep. Bound and determined to hand address all 400 of our Christmas cards this year, I got an early start and am chipping away at the list a little bit at a time (address a few, take a nap, address a few more, take a nap, etc, etc). 🙂
Two of my sweet friends came over yesterday and helped me get a jump start on a couple of projects and some wrapping while we listened to Christmas music…now, THAT kind of help I can embrace enthusiastically. Ha Ha Oh friends, who am I kidding, I’d be doing all this Christmas prep already with or without ALS!!! I’ve said from the very beginning of this journey that I wanted to stay true to myself so, I guess, my hyper organized approach to Christmas is a good example of that. (Yay for the fun of Holiday Prep!!)
7 thoughts on “Holiday Prep”
Oh Trish, every morning I pray for you that the Lord will be near, you will feel His presence, and He will give you just what you need for that day! Sending bundles of hugs and love, Nan
Hi Trish, I would love to come and help you ‘Prep”…..and take some notes on how to prep! There are type A’s and then there is me….:) Seriously, how do you approach the holidays with excitment without thinking of all the things you already feel behind on?! Please…let me come help and learn along the way! Win Win!!!
Hugs, Krista Sue 🙂
My dear friend your eloquent words both inspire me with your bravery and instill sadness with the uncertainty of the future for you. I love you dearly and pray for you two to three times a day knowing God is in control and loves you even more than I do.
I echo the comments above. You are a gentle, brave warrior!!
Oh my goodness sweet Trish! My heart aches for you. Please know we continue to lift you in prayer each Tuesday with my staff at work and you are never far from my thoughts on a daily basis. I love you so and pray for the Comfort of the Lord to be so real for you today. In the midst of all you deal with on a daily basis you still find time to keep us posted and do so in a real and raw way but with a positive note in each exchange. How i pray this would be taken away from you…”But God” is what i must come back to each time. Lord, comfort my precious friend right now! May she feel you holding her in your arms, may she hear your sweet voice and may her heart be full to overflowing knowing that You will never leave her or forsake her. Lord, may these not be just words, but truths to Trish. I pray for Rolf, Olivia, Max & Wilson today too, as they continue on their journey. Strengthen each one. Pour out your blessings over each one individually and also together as a whole. I ask all of this in the Mighty Name of Jesus Christ! Amen, Amen & Amen! I love you so!!! Melani
Well done, my friend. You continue to teach us, to lead us even as you walk this hard path with very little to light the way. And yet . . . you find it. And you ARE it. Thank you for shining your beautiful light out into the world wide web, for letting us see you and ourselves a little bit more clearly. Love to you.
Will I ever stop being in awe of you, my Everyday Hero? I think not.