When I wake, silence
All I hear is rushing wind
It’s all in my head
Moving Forward
It’s day three of this debilitating fatigue, and I’ve been managing okay. I’m doing the bare minimum, the most essential tasks. It is strange timing, because my monthly infusion was last Friday. My energy levels should be going up, not down. There’s a little bit of hope on the horizon however. I talked to my therapist yesterday and I think we uncovered some of the factors that could be contributing to this.
Factor #1: we are having a string of below freezing temperatures here in Michigan. I’m wearing multiple layers in the house just to stay comfortable, but I think it still zaps me of energy.
Factor #2: I’ve not been running or otherwise exercising regularly for awhile. That was intentional, after I declared it hibernation season for myself.
Factor #3: I wasn’t taking my medicine and vitamins over the Christmas break. I had no routine so I had just sort of forgotten about it. None of these meds are super crucial, and I often miss a day here and there with no issue. But a whole two weeks or more? I guess it caught up to me. So I’m back on that wagon as of yesterday, and hopefully my energy comes back to functional levels. One of the prescriptions I take is Vitamin D2, which is super important for us with MS, and especially during these winter months when sunlight is in short supply, So it was a rookie move for me to not be taking that. Slap on the wrist, won’t let it happen again. Moving on!
I got some good news recently, and that’s that I was approved for O&M training through the State of Michigan. Orientation and mobility training is something I didn’t know much about until I started looking more into using a white cane in public and unfamiliar environments. Because as I may have mentioned before, in new spaces I get *super* freaked out not being able to see and recognize what’s around me. I get so fearful it’s like my physical and mental world just shrink so that I’m in this invisible bubble. I walk slowly, staring at the ground, looking up every few steps to study my immediate surroundings. It’s a very lonely feeling. I hide it well, I think, but I got tired of feeling that anxiety. Even worse, I think I avoid going out in the world in order to avoid it, and I’m tired of that too. So after meeting with a coordinator from the State I am really hopeful that this program can help me. I think I’ve become so accustomed to the struggle, and I’m looking forward to learning how I can manage better and feel more confident out in public. Yay for me being my own advocate, right? This was a very difficult decision to make, to be sure.
That is all for now, folks. I do have some book reports rolling around in my head that I hope to get hammered out in the next couple of days (weeks?) but we’ll see. Until then, stay warm my friends.
Forking Fatigue
Well, you could say I really took that idea of hibernation to heart! I’ve not been sleeping 22 hours a day, but I have been resting more. I’ve still been active when I need or want to be, but when it’s time for down time, I committed to it. And when Christmas break was over and the kids were heading back to school (i.e. today), I was more than ready to get back to a routine.
I woke up this morning, fixed breakfast for the teenagers, fixed a sandwich for the hubby’s lunch, read my daily Scripture, unloaded and reloaded the dishwasher, and then? Hard stop. I’m acutely aware of how my body is feeling and what it was telling me was that I needed to go back to bed. It was strange, because fatigue usually creeps up on me slowly. This time it seemed like it had been hiding right around the corner and pounced on me all in a matter of moments. I headed up the stairs to my bedroom and had to pause midway to rest. I slept close to 3 hours and then willed myself to get up and get dressed so that I could feel at least halfway human.
Fatigue is so frustrating because I have all these things I want to do and my mind is still quite active. It’s a slow torture, if I’m being dramatic. So I occupy my mind by playing endless games of Block Blast, listening to podcasts about decluttering, and writing. I’ll probably take another nap, so that I have energy to prepare dinner.
I’m sorry I don’t have more interesting things to talk about here, but that’s my life at the moment. You get what you pay for. You’re welcome. I hope you have a blessed day!! Look for beauty and blessing and you will find it.
Hibernation
Okay, as I’m reviewing my new list of habits, I’m rethinking one, and that’s daily exercise. Let me explain. I know it’s good for me, I know it helps my energy levels. BUT – when it’s on my list to be done daily, and I don’t do it for whatever reason? I place guilt on myself, and that’s a crummy feeling. When I reviewed my habit list this morning, they all looked positive and worth doing except when it came to “exercise”. I almost cringed at it. Ew. It’s cold outside, my body hurts, and I have so much cleaning and decluttering I need to get done inside my house. And then I started thinking about bears.
Well, not right at first. I started thinking about the cold, and the season of winter, and then the animals that hibernate over the winter. Like bears! Bears hibernate in the winter, right? It’s a fascinating process they go through, and when they are preparing for the long hibernation, after they’ve consumed all the food and water they can find, they become increasingly lethargic and rest for almost 22 hours per day (source: https://bear.org/bear-facts/5-stages-of-activity-and-hibernation/). I’m fascinated by this and found myself going down a bit of a rabbit hole to learn more but that’s not your concern. The point I was coming to is that bears go through a season of hibernation, of excessive rest and that’s just part of their life. They aren’t waking up in the spring and saying to each other, “man, I feel like such a lazy bum, I’ve done absolutely nothing for the last three months.” No, they just get up, stretch their legs, and move on to the next phase.
Now I’m thinking, why can’t that be true for me? I realize that bears do it for very good reason. They don’t live in heated homes or have ways to store food and water for later. It’s a survival mechanism, and it works for them. But I’m also not talking about preparing for 100% hibernation. I’m still human, after all. I’m just saying maybe I need to be kinder on myself, knowing that my body has a much harder time during these colder months, and maybe an extended rest may be good for it? It’s worth a shot, right?
I’m just thinking out loud here so forgive my rambling thoughts. I think what it really comes down to is that I’m trying to be more mindful of how I spend my time each day. I’m trying to be intentional with my minutes, and I’m trying to stay more tuned in to where the Holy Spirit might be leading me. And I feel like He is telling me to give myself a break in this area, at least for a season. It scares me a bit. I wonder if this is just a deeply rooted part of me making elaborate excuses. Or what if I go too long without running or strength training and I never get back to it? And why am I posting this here on the blog? Wouldn’t this be better kept to myself in a personal journal? Maybe. Or maybe someone needs to hear this, that I struggle with creating and keeping good habits, and my thoughts go to weird places like hibernating bears. I don’t know. Maybe I’m just feeling a little bit of courage to let you in on my mental processing today.
The conclusion I’m coming to is that I’m removing daily exercise from my habit list, for this season. I will still try to stay active, in and around my house, but I’m no longer making it a “rule”. When my body says rest, I’ll rest. When it says go slow, I’ll go slow. And if it says move, I believe I’ll be ready to move! Now this mama bear is off to roast some pecans 😉
Habit Reset
Hey! We are officially on Christmas break! That means I can sleep in a little. Sleeping in was a lot more fun when I was younger. These days I tend to still wake up fairly early, and in pain so that staying in bed is not enjoyable. So I get up, make my coffee, get my mental work done, and then, depending on how I’m feeling, go back to bed for a morning nap.
I had a good morning at church today. God and I are working on some things. He’s tugging at my heart and helping me to let go of some of my idols. Getting back into a healthier routine. Every day is an opportunity for a fresh start. Today was that for me. A reset, for sure. My fluctuating hormones and energy levels have really made it hard for me to feel balanced, and I think that by getting back to some basic daily routines, I will start to feel more steady.
The routines I’m trying to work back into my daily life include drinking 64 ounces of water, reading, spending time in prayer and Bible study, and exercise. The idols I’m working to eliminate are binge watching television and the coloring app on my phone (which has since been removed… again.). These two things are not only big time sucks, but they aren’t great for my mental health and clarity. They’ve got to go.
Daily exercise may be my biggest challenge. I don’t have much energy these days, so it’s a matter of talking myself into it. Every day. The vicious cycle is that the less I exercise, the more my energy levels drop, and the more my energy drops, the less likely I am to exercise. So I just need to resolve to do it. And that is starting tomorrow.
I also want to get my writing mojo back; I miss it. I am journaling daily, so I am still writing. I don’t think that will ever change with me. I’ve journaled since I could hold a crayon. But part of getting that mojo back is why I’m posting more here, even if it’s mindless drivel. I’m hoping to write more content that I can be excited about. Writing wakes up parts of my soul that have gone dormant, but it takes a bit of work sometimes to chip away at the crusty covered up parts.
So that is what I’ve been hammering out today, new habits. Writing, reading, hydrating, praying, studying, and exercising. Hoping for the start of a new phase. I’m getting really bored of the current one. So here’s to new days and new habits. Until next time, shalom!
Celebrity Dreams
I’m only friends with famous people in my dreams. Seriously. I had a dream a couple years ago that I was sitting on the lawn at a Detroit Tigers game, shooting the breeze with Queen Latifah and Mos Def. We were having the best time! I was sad when I woke up from that dream, because I feel like we didn’t get enough time together.
This morning I had a dream that I was riding in a car with Patrick Dempsey and Peter Dinklage. Dempsey was driving, and Dinklage was in the backseat. I was riding in the passenger seat, and I was terrified. We were driving through a lot of traffic, over a massive, grated metal bridge. I felt like we were going too fast, and Dempsey was weaving in and out of traffic, past lots of larger vehicles like semis and vans. I was sitting there, helpless, expressing my fears, while Dinklage was shouting words of encouragement to me from the backseat, to no avail. I finally covered my eyes, and then the dream was over. I was glad that dream ended, but I would have loved to see where it was we were headed. And I’d love to sit down and have a conversation with Patrick and Peter.
Dreams are fun sometimes. Except when they are scary, I suppose. When that happens I really have to take myself through some focused breathing before getting out of bed, to remind myself what’s real and what’s not. They feel so real sometimes, it’s crazy!
(Final) Daily Post #12 – December 16, 2025
I might still continue daily posting, but I’m no longer going to call them daily. I don’t like the pressure, ha!
Today was a slow moving day, fatigue was in the background all day long but I was able to take care of the dirty dishes. Small victories. I also had a couple really great conversations and connections with friends, and that is an even bigger win, in my book. I have been blessed with some pretty incredible friends.
Tomorrow will be a food day. I have to order groceries for the husband to pick up, as well as get started on making yummy Christmas treats. And I may throw some vacuuming in there just for funsies. We’ll see. Have a great night folks!
Daily Post #11 – December 15, 2024
Did anyone notice that my #9 daily post was incorrectly named Weekly Post? I think that was the start of my downhill trajectory with fatigue. I did not post yesterday. I had trouble in the morning, so I slept in and missed church. I had a mostly uneventful day and then I was in bed before 9. And then this morning slept until 10. So you know, fatigue has officially set in. And the timing of it was unexpected, but it makes sense when I recall all the activity last week. My body is in recovery mode. This is the price you pay for doing fun things when you have M.S. I don’t care for it, but I’m not going to stop doing the fun things. I need quality of life, even if it comes in spurts and stutters. I can handle the down time. At least I have the dogs to keep me company.
This week I don’t have many events on the calendar, but I do have things I want/need to do. I’m making puppy chow for a family Christmas party, I still have some gifts I need to wrap, and I want to make some roasted pecans. But before all that I need to get my kitchen clean again, and that takes energy I don’t currently have, so it will just have to wait. I’ll get there, eventually.
Since this was yesterday’s update, I’ll try to do another one tonight and get back on the regular. No promises.
Daily Post #10 – December 14, 2024
Number ten! How about that? I think at this point we’ll just see how long I can keep it up.
Today is Saturday, so I was able to sleep in, which was wonderful. I did some reading and studying in the morning and then my husband and I headed out to get lunch and head to his mom’s house to help her with some technical issues. He is an only child and he does an amazing job helping both his mom and his dad with various tasks. I hope we get that lucky when our kids are grown. We had a great time visiting with her, and Mike was able to get her all squared away.
When we arrived home I made a ham and cheese fritatta for dinner. My daughter doesn’t like eggs, potatoes, or cheese, so she declined to eat with us, and my son wanted frozen burritos, so he was on his own to make those. I hadn’t made a fritatta in ages so I used a recipe to be sure I had the ratios right, but I messed it up a little. I had a hard time reading the steps in the recipe and put the cheese in too early, so I just added more at the end. It was a tad crispy but we both liked it, and I’ve dubbed the new creation, Melly Fritatta. No pictures, it was hideous. Hideous, yet tasty, and I’m looking forward to eating the leftovers tomorrow.
It’s common knowledge around here that I’m not much of a cook, so I was happy to make something that landed well at least with the adults. I’ve come to accept that I won’t be able to please my teenagers with my cooking. If you know, you know.
And that was pretty much my day. Next week I have holiday treat making to do, as well as finishing up the gift wrapping. It should be a lot more chill than this week was, and I hope I don’t regret saying that, because it may jinx it. We’ll see how it goes!
Weekly Post #9 – December 13, 2024
Tired of my daily updates yet? I am, a little, but I’m going to keep it up for awhile. Today was mostly uneventful, but we had some wins. I slept late, until 10:30, because I’m still recovering from three consecutive days of full activity. I was feeling really sore, and my legs were hurting a little from the cold weather outside, but I took a shower and that warmed me up a bit, so it relieved the pain. Nerve pain is no fun, but I’m glad that heat and movement are two things that help.
After my shower I went downstairs to make my coffee and loaded the dishwasher. If you see me going to bed with a stack of dirty dishes left in the sink, that’s a clear signal that I’m dealing with fatigue. I am really bothered by dirty dishes and will usually take care of them as soon as I can, so when I don’t there’s usually something wrong. But, I tend to have a bit more energy in the mornings, so this morning I just took care of them while my coffee brewed.
And then! Then, I started a movie on my laptop and started wrapping Christmas presents. This is not a fun project, ever, but it is one that feels great to have done. I finished after four hours, right as my daughter was coming home from school. Also this evening we finally decorated the tree that’s been sitting bare in our living room for the last 6 days. I guess this means I’m ready for Christmas. Next week I’ll wrap the last of the presents, make batches of puppy chow and roasted pecans.
With me being so busy and it being so cold outside, I haven’t done any running in a bit, but it’s not for lack of thinking about it. I’m sure once it slows down a bit I’ll get back out there. Cold weather runs are really difficult to get yourself out for, but they are always exhilarating and rewarding. Hopefully next week.
Anyway, that’s my update. I’m off to bed!
Little M.S. Runner 