Category Archives: Multiple Sclerosis

Books, Domestic Engineer, Food, Marriage, Multiple Sclerosis, Running

Recovery from fatigue, and running

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I had my monthly infusion today! Also, it’s my 26th wedding anniversary. I was telling my infusion nurse that I should probably be more excited about the latter, but it’s hard to feel like celebrating when you can barely move your legs. So celebration will just have to wait until my energy returns. Thankfully my husband is very understanding, and also not super into these types of annual celebrations anyway. He’s just happy to be able to spend any time with me, and it doesn’t have to be on the exact day. What can I say? We just aren’t romantic people. It works for us.

When I came home from my infusion I considered all the things that need to be done: laundry, cleaning bathrooms, clerical household tasks – told them all they can wait – and then ate a robust and delicious salad and took a solid nap. The weather was beautiful today and I really wanted to go for a run but that has to wait too. Because the effects from the infusion aren’t immediate. I’m hoping I feel up for running tomorrow. Even if it’s at a turtle’s pace, that’s fine because that happens to be my specialty.

I’ve been doing a lot of reading to keep me occupied while dealing with this damn fatigue. I have a really hard time sitting still, so reading makes me feel like I’m “doing” something, even if I’m not always fully comprehending what I’m reading. I finished a couple books this past week and am onto a few more. One of the books was about running – Let Your Mind Run by Deena Kastor – and I absolutely loved hearing about what goes through her head while training for and running major races. I’m a big fan of all of the female professional runners and have read several others’ memoirs. I was surprised that I actually felt a kinship with Deena as I read her stories of dealing with fatigue and injury. I felt like I’ve learned a lot of those same lessons while dealing with MS, and maybe that’s why I’ve come to love running so much. Even though I’ll never be considered fast, the challenge of running with MS will always drive me. I have a 10k coming up in June that I definitely need to start getting ready for, and I’m hoping to run a half marathon in the fall. Reading Deena’s book brought back my own memories of training, and I realized how much I miss it. I’m just praying that my health and legs can remain stable and allow me to continue.

Deep thoughts, Disability, Domestic Engineer, Dreams, Food, Health, Kids, Marriage, Multiple Sclerosis, Parenting, Running, Stories, Writing

Velvet Hammers

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This morning I was up with the kids getting ready for school, as usual. I even stayed up after they left and worked on some grocery lists for my husband to pick up later in the week. By 10 I was exhausted so I ate a small something and went back to bed. Slept a solid 2 hours. Well, I woke up part way through but was so groggy and my legs felt like cement, so I went back to sleep for a bit longer. I had a dream where I was in an office, chatting with a coworker. She was talking about having been journaling, and how it turned into a blog post. At my request, she shared her blog with me and then I told her how much I missed writing. It was an oddly normal interaction. Usually my dreams are much stranger.

It’s true though. I miss writing. I also miss working, but not in the way I used to. Not anymore with the delusions that I will someday be able to work. Especially not after this latest wave of fatigue. This one hit hard on a Wednesday, eight days before my infusion. Have you ever heard the term, “velvet hammer”? I remember hearing it when I was young. My dad used to use it in reference to the effects of Nyquil. It’s a soft but effective blow that knocks you on your feet and prevents you from getting up. That’s the way fatigue has been acting this past week. It hits, knocks me out for awhile, I sleep, I get up and do necessary things super slowly, and then it hits again. Thankfully it hasn’t been constant, but it’s frustratingly unpredictable. This is a reminder to myself that I cannot hold a job. I can’t be counted on for much. Every commitment is always a maybe with me. My family counts on me for food and clean towels, but not a whole lot more. They can see when I’m fatiguing and hold back on the requests. I’m thankful for that.

We hosted Easter dinner yesterday for my in-laws and I was so grateful to be able to have them in my home and to feed them a delicious meal, but I’m paying for it today. It’s the price of living life.

The thing is, I do recognize I have choices. I could choose to say no to all the social functions, and I sometimes do. I can say no to the dinners with friends and family, weekly prayer and Bible studies and then I would likely not have such debilitating fatigue. But I don’t want to miss out on living my life. I don’t want to miss out on interactions with my friends and family. So if this is the price I have to pay, so be it. I’ll ride this horrific roller coaster and suffer the lows to experience the highs.

An email came through this morning from an MS newsletter asking “what is your biggest hurdle?” Fatigue. Hands down, fatigue is my biggest hurdle. All the other damage MS has caused? Vision loss, hearing loss, cognitive dysfunction. I can deal with that, I can still find a way to be me. The fatigue, however, takes me out of my body and mind and leaves me a shell of who I was. Hate is a strong word but it applies here. I hate what fatigue takes away from me. The ability to do the things I want to do. Care for my family, laugh with my friends, write for my soul. It’s as if I’m in a waking coma. When I was super sick in 2013 and sleeping 20 hours a day? It didn’t really bother me because I wasn’t conscious. It was everyone around me whose hearts were breaking. But with fatigue, I am fully aware that life is happening all around me, and I’m unable to be a part of it. That’s hard, folks.

I realize this post is dark. It definitely took a turn, and I don’t want to bring you down. But this is my blog, after all, so if you can’t deal, feel free to move along. It’s fine. I won’t be hurt. I think I’m just trying to get back to authentic writing and this felt like something worth sharing. From journal to blog. Weird, I know, but it worked for the lady in my dream. The whole point of my blog is to give you a glimpse of my life with M.S. (and running, which is kind of still happening, more on that another time) and the real truth is that I have bad days but I also have good days, and I’ll try to keep talking about both. MS has altered my life 180 degrees from where I thought it would be, but I’ve been able to find joy and strength in so many unexpected ways. So stay tuned, if you dare, and I hope to share more of those things too. Soon. But for now, I might go back for nap #2…

Faith, Multiple Sclerosis, Visually Impaired, Writing

Dipping my toe back in

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I don’t know if anyone has noticed, but I haven’t really been blogging much lately. Lots of reasons for that, most I’ll keep to myself. But today I was jotting down some thoughts I had while folding laundry. I sometimes think my best writing comes like this, before I ever sit down to write. Since these were thoughts regarding my experience living with multiple sclerosis, I thought it would be appropriate to share here.

My expectations of myself are still, even after almost 16 hours, of someone I used to be. I expect to be able to complete activities with the same energy and stamina of someone who does not have MS. I am still hung up, and low key furious, if I’m being honest, about not being able to do “all the things.” And then I have a bad fatigue week, like last week, and I’m slamming drawers and throwing dishes because I’m angry that I can’t move my legs like a normal person. Like my former person. I *want* to do all the things. I desire to complete tasks so I make lists, I plan. But then, I collapse because just the planning of all the things has exhausted me. Dammit. And then I am overwhelmed by the enormity of it all. It’s so big, in comparison to my capabilities. But then I remind myself that the only way to eat an elephant is one bite at a time. And I ask for help. I pray to the Lord for guidance, for rest, for strength. I ask Him to give me some grace and patience for the moments. Wash, rinse, repeat.

It’s fine. I’m fine. Everything is fine. I remind myself that everything I do, all day every day, takes significantly more effort than it used to. Mostly this is because of my vision loss, which if I had to rate, is my very least favorite disabling feature. It is so difficult to see and I’m trying so effing hard. The striving is utterly exhausting. I’m done with it. Done, I tell you! Done!

Anxiety, Books, Disability, Health, Low vision, Multiple Sclerosis, Stories

Moving Forward

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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.



Daily Snippets, Deep thoughts, Exercise, Faith, Food, God speaks, Health, Multiple Sclerosis

Hibernation

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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 😉

Coffee, Daily Snippets, Disability, Exercise, Faith, God speaks, Multiple Sclerosis, Prayer, Writing

Habit Reset

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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!

Daily Snippets, Food, Friends, Multiple Sclerosis

(Final) Daily Post #12 – December 16, 2025

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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 Snippets, Food, Multiple Sclerosis

Daily Post #11 – December 15, 2024

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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.

Coffee, Daily Snippets, Domestic Engineer, Family, Housekeeping, Multiple Sclerosis, Running

Weekly Post #9 – December 13, 2024

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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!