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.



Stories

Forking Fatigue

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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.

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 😉

Deaf and half-blind runner with multiple sclerosis