Category Archives: Writing

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!

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!

Kids, Multiple Sclerosis, Running, Stories, Writing

What now?

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Runners like to ask each other questions like, “What’s next on your calendar?” or “Do you have a goal in mind?”. The answer to that first question is nothing. I have nothing on my calendar. But to answer the latter, I do have a goal, and that is to focus on running faster 5ks. I told my husband when I came home from Sleeping Bear that I was done with longer races for awhile. 10k would be my max. He didn’t believe me. He says I say that every time. Which is probably true, but whatever. I think this time I’m serious. We have a high school senior now, and our youngest will soon be learning to drive, so I just want to have more time and mental focus available to be there for my kids. Training for half marathons takes up a lot of time and focus. But speedwork for 5ks? I can do that. And it’s a goal that keeps me active, which for my M.S. is a really important thing.

So for the blog going forward I’ll still be talking about running and fitness related stuff, but I’ll likely start throwing in other random crap I’m obsessing about. Because I’m always finding random crap to obsess about. If you had to guess, it’s most likely food related. Probably.

P.S. I’ve really been struggling with my writing lately, and I know that’s really normal so I’m riding it out, but I’ve been thinking about short stories. I have lots of short stories in my head, and I want to work at getting them out on paper to share. And when I say paper, I mean the computer screen obviously. So you might see some of that here too. As always, no promises.

Peace out, folks. Shalom.

Deep thoughts, Kids, Stories, Trauma, Writing

She is not me

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I want to share something that I learned this week, in case it might resonate with you as well. The other day I found out some bad news. A horse that my daughter had loved riding had passed away. I was feeling quite emotional about it, and debated when to tell her. I finally decided to just rip the band-aid off and do it right away. I went up to her room, opened the door, and said, “I have to tell you some bad news.” And then I stopped. I couldn’t get the words out. Tears were welling up in my eyes. She sat there waiting. Then, jokingly, “Mom, just say it!”

I had to keep looking away. Swallowing my spit in hopes of stopping the tears and getting my voice back. After several bizarre seconds, I finally spit it out. “Trixie passed away over the winter.” And then I waited for my daughter’s equally devastated response.

I got nothing like that.

She was not devastated. Not overcome with sadness. Not the emotional wreck that her mother was appearing to be. She was calm. She explained to me, sounding so grown-up, “It’s fine. Horses die all the time for lots of reasons.”

I was stunned. She was so calm and pragmatic about the news. Who is this kid? She is not me.

Here I was, trying to shield her from the hurt, protect her from the sadness that I only assumed she would feel. Why? Because when I was her age, I would have felt those things, and this type of news would have crushed me, leaving me in a cloud of sadness for days.

But she is not me.

This had me thinking about how often I have done this with her, my daughter who looks so much like me and yet in personality and emotional makeup is so different. She has grown up in an entirely different home environment than I did. She has experienced different things. She has learned how to process her big, upsetting feelings and has come out stronger. When I attempt to shield her from these sad scenarios, what I’m really doing is doubting her strength. I’m saying I don’t believe she can handle it. But that’s not for me to decide, is it?

She is not me.

I am learning that I need to give her more credit, and this has me thinking in broader terms. How many times have I done this with other people? How many times have I tortured myself and put off having difficult discussions with family, friends, even coworkers (I’m going way back here; I haven’t worked a job since 2013). Why were these discussions so difficult? Or rather, why did they *seem* so difficult? I think there are two equally valid theories to answer this question. Some would say that it’s empathy, that I’m thinking of others’ feelings, and being courteous of how they might feel about the topic of discussion. Fair enough. But the other theory, the one that was a lightbulb moment for me, is that it might be projection. I am projecting onto others when I assume they would react the way I would. And I think in the aforementioned discussion with my daughter it was definitely the latter. I was assuming her reaction would be like mine.

But she is not me.

I am in awe of this. Humbled and amazed. How can a 14 year old be smarter than me? Well, I believe she watched carefully those first few years as I worked through trauma therapy. She paid attention to my changing reactions to every stressful situation that came my way. She learned from watching me. And she’s not afraid of her emotions the way I used to be. She can feel sadness and knows it won’t destroy her.

I am so grateful to see this emotional resilience in my daughter, but I am also grateful for the greater lesson I’m learning here. I am learning to allow other people to have their reactions, and I am not so acutely affected by them as I once was. We all have big feelings. I can handle mine, and you can handle yours. This has been one of the many great outcomes of trauma therapy, and I wish I could share it with everyone who cares to listen. That said, I’m hoping to write more about it here on the blog, especially since the kids are back in school and that allows me more headspace for it. So stay tuned for that, my friends.

Anxiety, Disability, Domestic Engineer, Faith, Family, Running, Stories, Writing

I need a new driver

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I made a note awhile back to write this post but felt stuck and left it hanging. I’ve been struggling to find my groove with writing lately. Today being the first of June, I set a goal for myself to write at least 30 minutes and run at least 2 miles a day for the entire month. Y’all, there are so many parallels between writing and running, it’s uncanny. Warming up is crucial to both. I haven’t run yet today, but I did some writing, and in the practice of writing I already feel like I’m finding my “voice” again.

Anyway, back to the subject of this post, needing a new driver. Let me explain. Healing from CPTSD has been an amazing and difficult journey, and I am so grateful to be on the other side of it. HOWEVER, it came with some downsides. I believe my constant level of anxiety was the reason I did the things I did every day. The anxiety is why I had my routines. It’s why I couldn’t leave the laundry unfolded for too long, it’s why I had to plan the meals. My routines were driven by my anxiety.

With anxiety no longer driving the car, my routines were off-roading. Wee!! It was kind of fun for awhile, liberating even. But now I’m sort of getting back to reality and realizing I need some level of routine. Because I don’t live alone, and people count on me. So if anxiety isn’t driving the routines, what is? That’s a really good question, and I think the answer had to come after a lot of soul searching. I realized that I really like having a clean home. It feels very satisfying to have laundry and dishes that are not only clean, but put away. I am able to relax when we have food in the kitchen and I have a plan for meals I can feed my family. Having this order in my home gives me a really peaceful feeling. So I’ve been reintroducing my routines bit by bit, but only after making sure it’s because I want them there, and they make sense.

This change may not be noticeable to anyone else. On the outside it looks the same to my family. The difference now is that when I have my fatigue days and can’t keep up with my routines, I am able to say to myself, “just rest, that can wait.” Or better yet, I can ask my family members to help. I don’t feel that shame and guilt that I did before. I am able to have grace for myself and this body I live in. It’s a *wonderful* thing.

This is a matter of self-care, which the culture talks a lot about and I sort of cringe at, but I do agree you need to take care of yourself first. Well, second. Jesus first, then take care of you. I am better able to take care of family now because I take care of my needs first. Only now I feel like I’m doing that because I want to, not because some invisible force told me I should. My stepmom used to say “don’t should on yourself”, and I love that saying. “Should” is a terrible driver. You may be getting things done that way, but you do it with the added baggage of guilt and shame. Find a new driver, one who gives you grace and patience. You might find, as I did, that the new driver looks a lot like you!

Books, Disability, Multiple Sclerosis, Stories, Writing

Infusion Day

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Today was my monthly infusion for Tysabri, the drug I take to manage my M.S. and ward off relapses. I don’t generally post about infusion days because they are typically uneventful so there isn’t much to talk about. Today was a little bit different.

Today my nurse had the challenge of some uncooperative veins. I don’t know why this is a thing, and she couldn’t guess why either, but for the last couple IVs and blood draws, my veins have been extremely uncooperative. My nurse tried so hard to get a good “poke” in two different areas of my left arm, but for some reason the pain was just unbearable. She could see I was in pain and my eyes were forming tears. She stopped what she was doing and looked at me with such kindness and compassion. She said she didn’t want to be causing me pain. It looked as though it was hurting her just as much as it was me. She was patient, allowing me to collect myself and slow my breathing as she made strategic suggestions for how we could make this happen. She knows how important these infusions are for my health, and she was determined to make sure I got my medicine one way or another.

The good news is that the third poke, on my right arm, went in with ease and with almost no pain at all. I was so relieved. I can withstand a little poking and prodding at the beginning, but there was no way I would have been able to withstand the previous level of pain for the hour it takes to infuse the medicine. No way. So I am thankful that she worked with me at my pace and didn’t give up trying.

I love my nurses at this infusion center. Love them. I’ve been going there for years and they have become like friends. They know me, and they treat me with care and respect. They are outstanding at their jobs. This young nurse was my angel today. She has gone above and beyond for me on numerous occasions, and today was no exception. I am so thankful for her.

The other thing that was remarkable today was that while I was sitting around waiting for my ride to go home, I started talking with the patient next to me. I had overheard her talking about recent trouble she was having with a doctor, and how she had to stand up for herself in order to be “heard”. Having just finished the (fascinating and horrifying) book, “All In Her Head”, my ears perked up. I politely interrupted and gave her kudos for being the “squeaky wheel” in order to get the care she needed. That sparked further conversation and she shared with me her journey becoming disabled 20 years ago, at the age of 42, being forced to leave a career she loved. Her story was so different from mine in detail, yet in essence there were so many similarities. I was truly intrigued and encouraged by her fighting spirit and positive attitude that I left the infusion center feeling like I couldn’t wipe the smile off my face. I don’t know if I’ll ever see her again, but I hope I do. I don’t think I’ll soon forget her, that’s for sure.

I think the lesson for me today is that I need to keep sharing my stories. It’s people like the lady I met today, that have been through transformative difficulties and are still able to smile and encourage others at the end of the day, that keep us truckin’ along. I pray that I am able to live another 20 years and more, so that I can keep showing people that you can endure hard things and come out the other side stronger. I meet people like this all. the. time. They are everywhere, and you just don’t realize it! Let’s share our stories. Let’s keep encouraging others. We’re in this together, folks. You are not alone.