Today’s cup has some reflection.
After my profound words in my post about being FIERCE. I was feeling empowered and wanting to continue my week with that same ferocity I went into date night with.
Here’s what I’m still learning about MS: when I’m fatigued… everything is harder. I know that sounds normal as most people don’t function their best when they are tired. But here’s where I find the difference. The fatigue causes me to lose words and trains of thought, my vision is slightly blurry, my joints and nerves hurt, my fingers are more numb or there’s no feeling, my (right) foot drops more causing it to catch on pavement/stairs/etc, my balance is questionable and my gait widens, causing a limp. All from being fatigued.
The other difference: the fatigue and symptoms continue for days. I wake up just as tired or more tired than when I went to bed. Tuesday was our date night. Wednesday, I wrote my post about being FIERCE interspersed with a little bit of work and wanted to continue my week with that same tenacity.
I had a late lunch consisting of a healthy salad, and though tired, I went for a walk in the neighborhood as exercise is good. On my walk was when I really started to realize my body was working against me. My foot had issues picking up, finding the pavement, and trying to trip me. Another indicator, which I hadn’t put together (my feet had stumbled on the stairs as I was preparing to leave for my walk).
Getting home, I rested a bit before my shower. Partly because Scott had just gotten out of the shower and our water heater needed time to warm water for my shower. But also because I now had realized I was mid MS fatigue flare but yet still had a night of festivities planned. I had 2 hours: to rest, shower, and get ready before we were expected at the neighbors for dinner before going to The Nuggets game.
After my 30-minute rest, I interrupted Scott (he was on a work meeting), letting him know I was going to take my shower but also to ask if he’d come and check on me when he heard the shower turn off as I was realizing I wasn’t doing great and our shower is a deep jet tub so it takes good balance to get in and out. Sure enough, I did need Scott’s assistance getting out of the tub after my shower… it’s here where my emotions broke me. Sobbing in my husband’s arms in a towel. The high from last night of feeling FIERCE and sexy came crashing down to the low of needing assistance to do some of the most basic things. It’s also here that Scott helped me realize it’s okay, I’m okay, I’m doing good, I am still FIERCE. Look what I already accomplished today: some work, a blog post, a walk. I was killing it! Composing myself and not wanting to give in to what my body was telling me, I got ready for our evening.
We had a tasty homemade Mediterranean dinner with our neighbors (I could live off Tom’s hummus…like foodgasm good). We had a great time at the Nuggets game even though the Nuggets lost it in the last 5 minutes. I even tried not to notice that my gait, my limp, and my foot were getting more and more pronounced as the night went on.
Getting home after the game it was the first time since being prescribed them in October, I wanted to take my pain pill. Not for the drowsiness effect that helps me sleep (reference Sleep post from a couple days ago) but for the pain relief. We also found out I can double dip… motrin and the pain pill. They have different ingredients and can actually compliment each other nicely.
Sleep was still hard Wednesday night, even with the pills. The pain was real, soreness on all levels, giving me restless sleep.
Thursday: Fatigue still present but feeling better than Wednesday. Part of being FIERCE is also learning to Give Myself Grace. But then here I am not wanting to let my MS affect me, I threw in a couple loads of laundry, made a grocery list, started this post, worked for a few minutes before showering, and then headed out the door for an early lunch meeting for work.
We had a great meeting where I was able to hear about the new software we’re using for retouching and the new processes we want to put in place for this year to help us streamline our time. When I only work a couple hours a week dealing with mostly client scheduling and questions, it’s hard to stay in tune with the studio/photography side of the business.
After the meeting, I headed to the grocery store. Halfway through my list, I’m realizing again that my MS fatigue is present… not that it went away but that I’m losing the battle of keeping it at bay. I finished at the store, had Scott help me unload and put away groceries and then collapsed on the couch.
I had plans on going back to write this post, to continue with the laundry, to make dinner. None of those things happened. We ordered pizza, and Scott folded a couple of loads of laundry before going into low power mode himself before heading to his 10:15 game. Something I had given up on attending earlier in the day.
Last night (Thursday), after Scott left I took my pain/sleep pill and continued to watch one of my favorite shows, West Wing. It’s probably my 5th time watching. First time rewatching the series since getting my diagnosis. I landed on Season 6, episode 8 last night: In the Room. Where President Bartlet suffers an MS attack on his way to and during his trip to China. Where he losses the ability to move his hands and legs. Although fiction, this rings so true to me. I like him, have lesions on my spinal column (those lesions cause most, if not all, of my symptoms), so seeing him lose functionality hit hard.
The hope is that my brain learns to rewire around the lesions, but that won’t happen all the time… like this week where I’m struggling. These are the times that those wires revert back to the path they used for the past 42 years and hit the lesion, and because it’s on my spinal column, the loss of motor function is a real scare. So there may have been some tears last night as I watched the first episode of a several episode storyline unfold.
I was able to sleep last night… and for the first time in a long time, I slept until about 10. Was it uninterrupted, no, but it was restful.
Today, I started this post again, having not listened to myself fully yesterday. Today, Giving Myself the Grace to struggle, to rest, to listen, to reflect.
I know I said the other day that my coffee posts are turning into more of a diary/journal of sorts. So, thank you for reading. I hope you learn along with me as I walk this path.
As always: love, light, and happy cups today… and remember to Give Yourself Grace.