All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
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, God speaks, Writing

New Wine

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I am new wine
Patiently aged
Broken pieces repaired
Fractures restored
Strength found
Scars healed

I am new wine
Searching for new vessels
To store this newfound freedom
Every discovery a gift
I am searching
But I am not lost

I am new wine

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Luke 5:36-38 NRSV: “He also told them a parable: ‘No one tears a piece from a new garment and sews it on an old garment; otherwise the new will be torn, and the piece from the new will not match the old. And no one puts new wine into old wineskins; otherwise the new wine will burst the skins and will be spilled, and the skins will be destroyed. But new wine must be put into fresh wineskins.”

Cochlear implant, Exercise, Family, Food, Health, Kids, Photos, Running, Stories

Goals, and a bit of honesty

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So. For the month of March I had attempted to go without sugar. The processed stuff of course; I did not abstain from eating fruit. Girl needs her fiber, you know? I made it 3 weeks, and here’s why. It really didn’t seem to make that big of a difference! I had been warned that I would go through a brief period of withdrawal, headaches, mood swings, etc. I had none of that. I expected to lose some weight. That didn’t happen either. My conclusion? Maybe I don’t really eat that much sugar. So after 3 weeks of this mild deprivation, I gave up the experiment. And again, nothing really changed. The only thing I really learned is to be more aware of what foods contain added sugars and how much. And I will continue to try and avoid those things as much as possible, but I don’t think I’ll go completely cold turkey again. I love donuts too much.

My new goal, for the month of April, is to complete some sort of exercise every single day. I’m 5 days in, and I’ve only missed one day, but I got right back on track the next day. This missed day was Friday. I just couldn’t will myself to do anything, I was so tired. However, upon reflection I realized the reason I was so tired was because on Thursday I went for a run during the day, and that night I went swing dancing and then to karaoke. So couple a late night with two forms of exercise, and I think I earned that pass for Friday. It’s my game, so I’m going to allow it. Moving on.

Today I ran two miles to the convenience store to buy myself a belated birthday donut (my birthday was in March, the no sugar month, which in hindsight was not very well thought out). While on the way I decided I would also buy donuts for my kids and then just walk the 2 miles back. I did not feel like running while holding a bag of donuts. So I completed 4 miles, half running, half walking. Decent workout. My legs will thank me tomorrow. And the kids were pleasantly surprised about the treats.

So, I need to be real honest here. I went most of the winter without much running. I didn’t do much strength training either. However, I have been slowly starting to get back to the gym for strength training, and I occasionally get out there for a run. Michigan has really been struggling to let spring in, because even when the temps are reasonable, the wind brings them right back down. One, I don’t like wind because my cochlear implants make it extremely loud and that’s just annoying. Two, it’s cold man!! Running helps my body warm up in most places, but my face and fingers and toes still end up chilled to the bone and it just makes me grumpy. It does not make for enjoyable running. Of course, I’m still grateful to be able to run but I seem to remember having more joy with it, and I can’t seem to find that yet. I need a race on my calendar to get excited about. I’m working on it. All my runs have been short, 2-3 miles, and that doesn’t really get me out of my neighborhood. I want to be free! I want to explore the trails! Get me away from the road, I want to run by some people walking their adorable dogs! I’m reminiscing my marathon training days, and longing for that feeling again. Not that I have plans to run another marathon anytime soon. A half, maybe. We’ll see. I definitely want to do more 5ks and 10ks, but only if they involve fun swag. I’ll never win these races, and I can run at home for free, so good swag is a must for me.

So yeah, goals. Limiting sugar and exercising regularly are two things I’ve really been working at to keep myself as healthy as possible. It’s what I’ve gotta do to fight disease progression, and I think it’s going pretty well. Most days I feel pretty good. I still tire super quickly and take a long time to recover, but at least I’m having those moments where I’m able to be more present with the people I love. These are good things. While I’ll never say I’m thankful to have M.S., I’m always grateful for what I’ve learned from the challenges it throws at me every day.

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!