Category Archives: Writing

Disability, Family, Grown-up Stuff, Health, Multiple Sclerosis, Running, Writing

Emerging from the fog of four weeks of fatigue

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Is there another word for emerging that starts with F? Something about alliteration soothes me. I know I’m weird. I’ve embraced it.

I’m popping my head up, finally. Happy new year! I had a good holiday season. A lot of relaxing and spending time with my family. My son was home from college for an extended period of time, so that was nice. After he went back to school his absence was almost palpable. He is the energetic extrovert of our family, so without him we resumed our antisocial ways, only peeking out occasionally from our caves to eat food and play with the dogs.

The reason for my four weeks of fatigue was an unfortunate timing of events. In mid-December, we learned my husband’s employer was switching to a new health insurance company, in order to keep it affordable for everyone. I’m not mad about the decision, I understand the necessity, but the timing of it was not ideal. Most of our medical providers participate with the new insurance, but my infusion center did not. This forced me to move to a new infusion center. Which involves getting new authorization and approval. My infusion was due on January 1st. The new insurance went into effect on January 1st. This obviously did not allow enough time to make the transition. It was a big ‘ole mess, and I spent several weeks on the phone fighting to get approval and get scheduled for my infusion. I finally pulled a “Karen” and demanded to speak to a manager. Surprisingly, that actually worked! Within 2 days of talking with this manager I had my approval and was scheduled for my infusion. It was almost 3 weeks late, which had me worried some, but aside from extremely debilitating fatigue, I had no new MS symptoms. Knock on wood. It was my usual week of fatigue I get prior to each monthly infusion, plus 3 bonus weeks. 1 + 3 = 4. FUN.

So now that I’m coming out of that fog, I’m loving the feeling of NOT dragging. Remember when you think about doing something and you just get up and do it? You don’t have to take deep breaths and talk yourself into it, one painful baby step at a time. Like showering. Remember that? It’s here! It came back! Now you have three weeks to catch up on everything before the next bout hits. But beware, you don’t want to wear yourself out so be careful. Don’t rush in. Be intentional. You’ve got this.

So that’s where I’m at. I’m so thankful to have made it through that hiccup, and just praying my health stays stable going forward. Now that my head is out of the fog, I’m refocusing on some basic yet important things, and I have a list (of course):

1) Drink 2 liters of water a day – I actually set an hourly timer on my phone to remind me to drink. We’ll see how long that lasts. :/

2) Eat more fiber – daily chia pudding or overnight oats with fruit have been my latest obsession.

3) Write memoir – I’m still plugging away at this gargantuan project. The process isn’t pretty but it’s moving forward at sloth pace. What I’ve been doing to work on this could fill a whole post of it’s own, if I get around to it. No promises, but I’ll think about it.

4) Running – yeah, I haven’t been running, but I need to. It’s good for my health, my legs, my fatigue levels. And, I have a 10k in just under 7 weeks so I need to get my tail back in gear, pronto!

That’s it for today’s update. Thanks for tuning in and I’ll see you next time!

Disability, Domestic Engineer, Exercise, Faith, Family, Health, Hobbies, Running, Writing

Brain Dump – Winter Edition

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You guys. I’m neglecting this blog. I do apologize. I’ve been hiding. Hibernating a little. But still active! Just not feeling the urge to broadcast my life. I’m still making the super slow shift from “over-sharer” to “intentional storyteller”. Finding where I want to hold boundaries with my writing and the sharing of it with others.

Part of this hesitation with writing is that I am becoming more aware of the reasons I do things. Why do I write? Why do I blog? I’ve been blogging off and on for over 20 years, and I think for the majority of those years it was just to clear my head, share funny thoughts as they came. It was a great way to add some whimsy to my dull life working in offices and crunching numbers. It was FUN.

Until it wasn’t. When I became disabled in 2013, I considered dropping it altogether. Through a series of events and gentle Holy Spirit nudges, I felt called back to it. To share what I was going through as I adjusted to a new life. So I picked it back up and stayed with it happily until 2020, when the sh** hit the fan, as they say. My long term disability insurance representative had combed through my blog, my medical records, and notes from our phone calls, then twisted all my words and used them against me to cancel my monthly benefits.

I fought to regain those benefits and eventually won, but it took over a year. I was cautioned by my attorney to be careful what I put on social media, if anything at all. It was some time before I felt safe enough to return here, and I’m still a little gun-shy about everything I post.

All of that to say, I *want* to be here. I want to post updates on my life. I want to encourage others to never give up when life knocks you down. I’m just not super awesome at the consistency of it. But I’m working on it. I haven’t forgotten you!

So here’s a running update: I haven’t been doing any running because it’s cold and icy outside and I refuse to run in the basement on the treadmill. It’s depressing, okay? However, I’ve been keeping up with small daily exercises, thanks to an online group that helps keep me accountable. I have a 10k race I’m signed up for in mid-March, so I intend on picking back up with running after the holidays.

A Writing Update: I’ve been working a lot on my memoir, again. This time it feels like it’s actually going somewhere. I went down the rabbit hole of memoir training for a while there, but I did eventually land on a method that works for me and am excited to feel like I’m making real progress. Now that I have a structure and a plan, my intention going forward is to write 500 words per day. Yesterday was my first day and I wrote twice that amount, but I don’t expect that to be the norm. I almost finished a whole chapter and that was pretty exciting. I have a note above my desk that reminds me *not* to edit while writing, because I can’t be creative and critical at the same time. I joined a writing group that meets every weekday on Zoom, and I enjoy having that time and space to focus solely on the manuscript. I’ve only been going once a week so far, but if things slow down on the homefront I may try to join more often.

Other than that, I’m just blissfully busy with my husband and kids. Taking care of the home, preparing meals, keeping us all healthy. Super mundane stuff that we all take for granted, but that I am grateful to be able to do. What are you grateful for these days?

Exercise, Trauma, Writing

My relationship with writing

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I was listening to a podcast interview with an author awhile back. The author talked about her writing as a relationship, and that stuck with me. I feel similarly. I’ve always had a relationship to writing. A relationship *with* writing. Some days we are close, spending all our time together. Other days not so much. We haven’t been all that close the last few years. With all the running and trauma therapy, it sort of took a backseat. Sorry, Writing. I miss you!!

I am working to be more intentional in a couple areas of my life, and writing is at the top of the list. I am working on writing a book length memoir. I have talked about and considered it for years, but now I’m actually taking tiny baby steps every day, every week, to slowly move towards that goal. I have a small group of friends who have graciously agreed to receive regular updates. Sort of an accountability group, if you will. They are also great cheerleaders when I need the encouragement.

There have been lots of moments along this journey where I have needed encouragement. This is not an easy project I have taken on. First of all, the craft of writing is something I have zero training in. Second of all, I’m bumping into areas of yet unprocessed trauma as I am working to craft the story. So I’m having to go gently and that takes time. Third of all, I still have all the other areas of life I need to remember to give attention to!

I have a tendency to get a little obsessive with writing, and the side effect is that all other areas of life get shoved to the side. I’m working on that. I’m trying to stay intentional with fitness. Running and strength training, specifically. I talked to the staff at my gym today and have plans to sign up for weekly classes and meet with the personal trainer to go over my goals. Looking for more accountability. It’s a step.

So, full disclosure. I feel like my relationship with writing got a little dysfunctional, and this blog post is my step #1 to getting back to a normal, healthy (aka not obsessive) relationship with it. No more pouring over memoir methods, coaches, videos, books, podcasts, etc. I’m scaling WAY back on that, and am going to try to be intentional about blogging here again. Short blurbs, stories that pop into my head and beg to be put down in words. EVEN IF they aren’t well-written stories. I still want to tell them. That is what I feel like God has put on my heart and held there for the longest time. Months, years perhaps? He has given me a desire and I need to stop ignoring it. The nagging hasn’t stopped, so I might as well see what happens if I finally give in to it.

Oh! And so I don’t forget, I need to tell you about my recent trip to the Abbey with my sister. So if you don’t see that post come across in the next couple weeks, bug me will ya? I wrote half of it but need to finish it. Also, I’d love to tell you what I’ve been learning in the kitchen. I could talk all day about food but sometimes it’s harder to get it down in words. So there are lots of stories to come through here, if I do what I say I’m gonna do. Stay tuned. *Shalom, Mel*

Books, Family, Writing

Memoir Progress

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Yes, I’m still working on writing a memoir. I’ve been fuzzy on the subject of it for years, as I’ve picked it up and put it back down again – over and over and over. This time feels different, however, because I’m using a system designed by a memoir coach I have been following for awhile. I was in an online writing group awhile back and someone in the group told me about Wendy Dale, who offers free online tutorials for memoir writers. I’ve soaked up the info she offers in her YouTube videos, and have always loved her simplistic yet effective advice. Well, this year she published a book, The Memoir Engineering System, which easily spells it out for you with step by step instructions! Perfect for my type A, over-analytic writer’s heart. I’m loving it. It’s a basic how-to. So I’m following the steps and feeling like I’m actually making progress toward a finished product. The current step I’m working through has me reading through a bunch of old journals, which is kind of interesting. Not the most fun, but I think it’s what I have to do to come up with her “chronology of chapters” step. The every day events you forget about as time continues to pass. I’m only working on this project an hour a day, so it’s slow going, but at least it’s going. Forward motion.

Our son is graduating from high school Sunday so if I’m not a total emotional mess, I’ll be posting soon about that, and also some recaps/reviews of the books I’ve finished reading recently. Trying to keep a healthy balance around here. Mostly succeeding. Chow, folks. Have a beautiful day!

Books, Running, Trauma, Writing

Book Review: The Longest Race

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Kara Goucher is a professional runner, now retired from competing. She is still very active in the running world as a track and field analyst for NBC, and she hosts a podcast with another favorite running rockstar, Des Linden. I had heard of Goucher but not known much about her story. I like to learn about these professional female distance runners because it inspires me to keep running. The Longest Race is Goucher’s memoir about her life with running. She has a long list of awards and accolades, but I won’t list them here. You can look her up. If you do, you might find her described as a whistleblower of the doping and sexual abuse that was going on at Nike. This is what she talks about in this memoir and I was both intrigued and mortified. The abuse she endured was awful, but she was able to rise above it and hold accountable the people who abused her.

I was able to relate to her story of abuse only in a broad way, because those on the other side of trauma often speak a lot of the same language. Even if the details are different, we all get it on one level or another. So that was refreshing to read and I found myself wanting to reach into the book and hug her.

I was also inspired by the way she talked about running. It helped revive a bit of my desire to run more. When she was training for competition it sounded brutal, but when she was able to run for fun, I could definitely relate, and it brought back warm memories of when I was training for my marathons and half marathons. Some of what running brought Goucher – freedom, confidence, courage – are what running has brought me as well. Throughout the book I felt like I could relate to her, and it inspired and encouraged me. I think that’s the whole point of a memoir, so I would say she nailed it! I would recommend this book, 10/10.

Bible Study Fellowship, Books, Coffee, Daily Snippets, Disability, Exercise, Faith, Family, Friends, Writing

Long and Rambling, perhaps

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Oh my word, friends. I joined a challenge to do 100 push ups every day in the month of May. My sister does these challenges with a Facebook group and they have always fascinated and tempted me, but this one grabbed me because she said you could do modified versions, and you could space them out in any increment, so I thought what the hell, let’s give it a shot! I have always had super weak arms and would love to get stronger so this is proving to be good motivation. We are eight days in and I have come to love the countertop pushup. It seems to be the perfect level of challenge for me. I can’t do the 100 all at once, but even in this short number of days, my endurance is already improving.

Today I decided to head back to the gym for some elliptical time and a full body circuit workout. The bonus? A hydromassage to finish it off. The hydromassage beds at Planet Fitness are 10 minutes of pure relaxation. My muscles are thanking me.

A short walk down the street and I’m parked at the coffee shop enjoying a large Americano. I was feeling so sluggish all morning and I think it was the lack of caffeine. I really had to push through that workout at the gym. It ain’t easy folks, but it’s worth it.

The interesting thing about this morning was that I was feeling really tired, but not fatigued. It was your classic – not enough sleep, not enough caffeine, wanna go back to bed – tired. I was feeling sluggish and borderline grumpy. It was refreshing in a weird way, to feel something like “normal”. Like how I used to feel sometimes on Monday mornings, heading into the office to work. A lifetime ago.

You could say I’m still working on accepting the loss of that life. It comes in bits and pieces. I am so grateful for where I am and how God has blessed me through disability. I am able to spend days like today at the coffee shop while my husband goes to work. But there are still parts of that life I long for. I’ll always long for independence. It’s just that these days it’s a muted longing, and I’m not nearly as angry about it as I used to be.

My desire to write more is coming back. A long time ago I was introduced to a memoir coach, Wendy Dale. She does paid coaching, but she also offers free coaching on YouTube videos. I had watched all the videos and was impressed with her knowledge. She was somehow able to deliver all this info in a simple and straightforward way. I was intrigued, and thought I was going to really get going at writing more, but life sort of pushed it to the side. I was more focused on my family and running than writing. And if I’m honest, that’s probably still true. Our son, our firstborn, is graduating from high school any minute now and will be off to college in the fall. You can imagine the mental load. Also, I’m working to get back into running, because I took too big of a break over the winter and my health and energy levels took that hit pretty hard. But back to Wendy. She recently published a book, “The Memoir Engineering System”, so of course I had to read it. It was all this lovely knowledge of hers, all compiled in one place. I purchased the Kindle version and devoured it in a few short days. It will be my guide book for when I am actually ready to write that book, but for now it’s all just rolling around in my head. You guys, I have so much rolling around in my head, you have no idea. Well, you have some idea because I like to ramble on here on the blog. I mean, that’s kinda what it’s here for. To help me declutter my mind. You’re welcome.

What else? I’m still reading a lot. Watching a lot of Criminal Minds reruns. Just finished up another year of BSF (Bible Study Fellowship). We studied the book of Revelation this year. In my 40 years as a Christ follower I had never read Revelation so I was a little apprehensive about it. It went well though. I had a great discussion group. Very diverse, and as my friend Cynthia noted at Share Day yesterday, full of alpha women. It was terrific. I don’t know how it is at other locations, but our BSF here in my city does a very good job at running this program. It’s always a safe space. Some days the passages we are reading are really difficult, and I have always loved that questions are welcomed and encouraged. We don’t always walk away with the answers – almost never, to be honest – but we walk away with a broader perspective and insight. I’ll miss my BSF ladies over the summer but I look forward to seeing them again in the fall!

I think that’s the bulk of my rambling updates, for now. My coffee needs my attention. Have a beautiful day, my friends.

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.”

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!