Oftentimes, it seems as though nothing changes in my life; every day is exactly the same.
But when things do change, they happen drastically, dramatically, and en masse—everything, everywhere, all at once, as it were.
Back in September, for example, when Nicholle lost so much of her mobility—and with it, much of her independence—there were so many changes and adaptions Nicholle, the kids, and I had to go through that life quickly became unrecognizable for us, though only for a short while. Just as we always do when MS flares up and forces us to play along with it, we adjusted to yet another new normal. It sucks, but that’s just the way life is with degenerative nerve diseases with no cure.
Over the past couple of weeks, another barrage of changes has been set in motion, this time for some good.
At the end of November, I’d received a text message from a friend at the local chapter of the MS Society asking if I had any desire or intent to give another rally for increasing my fundraising total for this year’s Bike MS event—which I didn’t get to (again) ride due to an MS flareup (again)—as I was on the cusp of being bumped out of the semi-prestigious Club 100, the top 100 fundraisers for the event. In uncharacteristic fashion, I messaged back with something of a dump of all the goings on in our lives and why I had missed out on participating on this year’s ride.
The topic quickly changed from “How much more money do you think you can raise?” to “How can we help you?”
In what seemed like no time, I was on the phone with an MS Navigator, a specialist with the MS Society at their main office in Denver who helps folks nationally connect with resources to help life with MS be more manageable. A list of what Nicholle and I had discussed was laid out with a plan for the Navigator to connect with Nicholle (as the person with MS) and formally set things in motion.
So it’s now been a few weeks, and here’s all that’s happened:
- Patient lift hoist was purchased to help with transfers in & out of Nicholle’s wheelchair; cost reimbursed
- Medication that was the most likely culprit in causing flareup symptoms back in September isolated & switched back to previous iteration; results, promising
- Adjustable beds purchased, as hoist allowed easier access to bed for sleeping; Nicholle & I now sleep in the same room (and her in an actual bed) for the first time in years while also allowing her & the kids cuddle & cartoon time in the mornings during the winter break; cost reimbursed
- Nicholle gifted a subscription to Zwift to allow her to resume use of BLE modules we setup earlier in the year; I also made some additional modifications to the setup to allow her to be more independent with exercising
- A contractor has visited & measured the master bathroom for a ceiling-mounted hoist to help Nicholle be more independent; they may also be able to extend a ceiling track to the bedroom for even greater independence
It’s been a busy past few weeks, for certain—and not without issue. Despite not having to go to work the past two weeks, the daily toll & toil of being caretaker/husband/father/teacher/individual has again worn me down, and I am certainly not proud of how I’ve reacted. But I’ve some additional plans to put in motion within the first few days of the new year to help me, in turn helping everyone else.
Thanks for reading.