Category Archives: Deep thoughts

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…

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 😉

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.

Daily Snippets, Deafness, Deep thoughts, Disability, Family, Friends, Health, Holidays, Low vision, Mental health, Multiple Sclerosis, Nonsense, Running, Stories, Visually Impaired, Writing

Some Friday Ramblings

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**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**

I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.

I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.

I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.

So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.

And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.

Deafness, Deep thoughts, Family, Friends, Hearing Loss, Miracles do happen, Multiple Sclerosis, Prayer, Stories, Tinnitus, Trauma, Visually Impaired

Trigger Warning: Suicide

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Doctors never did figure out why I had been sleeping so much. They tested for all sorts of things, but came up short. They suspected Susac’s Syndrome, which at the time I thought was fatal, so I’m glad that turned up negative. I’ve had a couple fluorescein angiograms to take pictures of the blood vessels in my eyes, but both times they showed that everything was normal. To this day, I’m still a medical mystery. 

After sleeping a couple months of my life away, I started to wake up a bit more to what was going on. I was still very deaf and still could not see well, and still had no answers and no hope. The reality of it all was starting to set in. I was now, ironically, having trouble falling asleep at night. The tinnitus would get so loud. I remember the ringing sounded a lot like chanting monks, which would normally be a comfort to me, but at four in the morning it was a nuisance. I brought this issue up to Dr. Hong at a follow up visit and he prescribed me Xanax to help me sleep. It worked wonders. I was able to get proper rest at night and was miraculously still able to wake up in the mornings to help get the kids ready for school. 

I want to convey my level of desperation at this point in time without being overly dramatic. Mike and the kids had left me home alone for an evening because I had seemed to be doing so well, but that turned out to not be the case. I was feeling scared and beat down and I couldn’t see any way out of my situation. I was unable to communicate effectively with everyone I cared about. I felt utterly ALONE. I was at the end of my rope, and wanting to let go. I was feeling so desperate for a way out that I seriously considered swallowing the whole bottle of Xanax. Even more frightening than the hearing and vision loss was the thought that I wanted to check out of life permanently. I reached out to my girlfriends, hoping and praying that one of them could come over and save me from myself. My friend Tracy was the first to respond and she rushed over to the house. She prayed with me and hugged me and reminded me that I was not alone in this struggle. She left that night with the bottle of Xanax so I wouldn’t be tempted again.

As awful as it was, that night was a turning point for me. I had to stop retreating into myself. I needed to reach out, both to God and to the friends and family He had put in my life. After my family returned home that night and we put the kids to bed, I shared with my husband what had happened. I could see from his face that he was both shocked and sad, but he was glad I told him and he reassured me that we were in this together, and that he and the kids needed me. We hugged for a long time and he let me cry on his shoulder. It was good to be reminded that he was there for me because, while we didn’t know it yet, we had an important trip coming up at the end of the month to the Mayo Clinic. I’ll be sharing more about that in the next installment of Adventures with Mel 😉

Anemia, Coronavirus, Deep thoughts, Health, Mental health, Running, Trauma

Thoughts on Trauma

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Trauma. It sounds like an alarmist word. Until you find that it’s exactly the right word to describe what you’ve been through. You didn’t know it at the time, because you were a child and the adults in your life were telling you this was normal. That you had a good life. That you were just overreacting. It was probably just those teenage hormones lying to you about how bad things were. But hormones don’t lie. People do.

And children grow up and start remembering. Often not in clear memories, but in physical responses to situations bearing resemblance to what you went through. That part of your brain remembers, and it’s trying to protect you. Don’t ignore it. Get help. Because while the danger is no longer out there,  it is now within you, internalized and threatening to repeat all the same behaviors that were normalized for you growing up. The rage attacks, the love bombing, the blame shifting, the gaslighting, the confusing and conflicting messages. You’ve got to end the cycle. Work on you. You are the only one you have control over.

All these terms, these are buzzwords. But what they are to me are light bulbs and with them someone finally turned the lights on when I’ve been stumbling around in the dark for years, decades even. The lights are on and now I’m standing in this maze and trying to find my way out. It’s not easy. But I have  cheerleaders, faithful supporters standing to the side shouting directions, whispering life giving encouragement. I’m going to get out of this maze. I must. I am a trauma survivor.

All of that I wrote, previously. But I feel it needs a little more explanation. See I’ve been living in a constant state of anxiety for as long as I can remember. And late last year I discovered that wasn’t normal. The racing heartbeat, the tremors, the cold sweats, the nightmares, the panic attacks. These were symptoms of complex ptsd. I sought help from a trauma therapist back in November and I’ve been seeing her ever since. Twice a week, sometimes three, to work through and properly process the trauma I’ve lived through. My therapist uses a method called EMDR, eye movement desensitization and reprocessing, and it’s fascinating. I had stumbled across it while doing my initial research into what I was experiencing and it’s turned out to be exactly what I needed. Because traditional talk therapy is difficult when you have trouble with your memory. I won’t go in to the specifics of it, because you can look it up for yourself, but I will say it has worked it’s magic rather quickly. In four short months I am far less triggered by every day stressors. I’m finding it easier to relax my shoulders. I’m sleeping through the night (most of the time). The nightmares have waned considerably. I’m getting better at responding as opposed to reacting.

So we’ve stopped the bleeding, so to speak, but I still have a lot of healing to do. My mind is still replaying toxic messaging, I’m still doubting my every decision, my self-worth. I’m still desperately seeking validation every where I go. But I am on the mend, I’m getting the help, and that’s what matters most.

This is a big reason why I have not posted here on the blog since January. Other reasons are related to my physical health. Some of it covid related, some of it related to being a pre-menopausal woman. I think I’ve been anemic for some time, who knows how long it’s been building, but it ended with a trip to the ER the day after my birthday and my first ever blood transfusion, hurray! So I’m seeing doctors, I’m taking medications, I’m on the mend. However, this has all wreaked havoc on my energy levels and my ability to run, which *KILLS* my pride and frustrates me to no end, but I’m trying to remember this is just a season and it won’t last forever. I will get back to running, and I’ll update y’all when that happens (which I hope will be soon, since I have races on the calendar calling my name).

Coronavirus, Deep thoughts, Running

Runs with Birds

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Laundry Always Waits

I ran today. I hadn’t run in over a week, and I would say 90% of that was because I was feeling emotionally drained. And I won’t lie, I’m still feeling somewhat emotionally exhausted, but I knew I needed to get some sunshine and fresh air. My soul needs it. So I jogged, I walked, I waved at strangers, and I listened to the birds sing.

I came back to the house and all the world’s problems are still here, but they don’t seem to be weighing me down as much. For now. Until they get too heavy again and then I will go out again and offer my cares up to the Lord and let the birdsongs fill the empty space in my heart.

I pray you are all doing well and staying healthy. May God sustain you and meet you wherever you are.

Coronavirus, Deep thoughts, Family, God speaks

Socially Distant but not absent

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So, there is a coronavirus pandemic in full force. For the past week, we’ve been practicing social distancing. This a term that one week ago had to be explained. Now it seems everyone is using it as if it’s been a common part of speech all our lives.

As a mostly introverted person, social distancing is not very difficult for me. Mostly. I’m happy to stay home. But even for this introvert I’m concerned. I wake up each morning with a panic rising in my belly. I worry about how long this is going to last. Is it even working? What upcoming events were we looking forward to that will need to be cancelled or drastically altered? How will my kids be affected? Am I going to have to start homeschooling them? What activities and experiences are they missing out on? And the biggest question – how can I continue to parent well and keep my panicky feelings from spilling out on my children? I do not want them to be negatively affected by this. I want them to become strong, resilient human beings. The way survivors of The Depression and World War II turned out to be incredible human beings.

The real truth is that almost all of my nagging questions are things I can do pretty much nothing about. Worrying is futile. And all it does is feed that panic, allowing it to rise further. So, knowing this truth, I repeat it to myself and I remain rooted in my faith in Christ. He knows I’ve lived through uncertain times, and He was the one who helped me live through them and come out stronger. I have no reason to believe He won’t do the same thing again, for all of us.

Stay home. Stay connected. Stay well.

“The Lord will fight for you; you need only to be still.” Exodus 14:14 NIV

Deep thoughts, Disability, Faith, Family, God speaks, Multiple Sclerosis, Writing

Abbey trip reflections

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So, folks. I’ve gotta get this nagging voice out of my head, so I’m just gonna spill it. I said I would talk about what I heard at the Abbey almost two weeks ago, so here goes nothin’.

The biggest revelation, the biggest message I heard God speaking to me was that I need to keep sharing my stories, and with that I need to get back to writing my memoir.

We were sitting in the chapel, following along with the Psalms the monks were chanting, and they came to Psalm 40, which I recognized to be the one given to me when I lost my hearing. Given to me, as in, I heard the song “Jesus, Lover Of My Soul” one time in a movie many years prior, and then it was all I could hear in my head when I could very literally hear nothing else. That song, that Psalm, became my mantra for over a year. The words “taken me from the miry clay” resonated with me on so many levels.

Reading the Psalm in church got my attention, but that’s not the part that spoke the loudest to me. What spoke to me most was when I went back to the cottage and read the Psalm for myself. Verse 3 in particular, and I immediately felt God saying that I needed to continue writing – “singing my song” – so that people will see Him and put their trust in Him.

He put a new song in my mouth,
    a song of praise to our God.
Many will see and fear,
    and put their trust in the Lord.

What my sister helped me see was that writing my memoir is much like training for and running a long race. It takes time, it might not look pretty, but the most important thing is that you keep working towards the goal. The key is consistency. So even if it’s just a half paragraph a day, or even every other day, it’s okay. I just need to be committed to not quitting. I will get this memoir written. It’s going to take a lot of patience, and you can bet I’ll need a lot of help, but dang it I’ll have it done eventually.

I have over 7000 words written at this point, and I’m kind of stuck as to where to go next, but I’ll keep chipping away at it. I’ve told a lot of small stories to make up those 7000 words but there is still a surprising amount of detail left to tell in order to make it a complete story. Some of those are details I don’t possess, memories that aren’t mine to tell because I was either sleeping or only somewhat conscious, but that’s where I’ll need to utilize my new “asking for help” skills.

It’s quite intimidating, the idea of writing a book. I have author friends and family so I know it’s possible. Normal human beings do it all the time. I just worry that it’s not possible for me, because I have cognitive struggles from the M.S. But that’s the primary thought that’s kept me from working on the book, so I need to stop thinking it.

Cognitive struggles due to M.S. Big Fat Sigh. This is probably one of the most difficult parts of the disease for me to accept. I was always the smart girl, the know-it-all, the straight A student. “That Mindy, she’s so smart”. I never had to struggle to understand things. That 4.0, smart girl persona? I let that define me, and now that that part of me is being chipped away, it seems my self-worth is being chipped away right along with it. This is painful to write about, but maybe it needs to be said, because as I’m writing this I am getting rather emotional. And in my experience, that lump in my throat is usually the first step towards healing a deep wound I have been ignoring for far too long. I need to swallow that lump, along with my pride.

I struggle daily with forgetting things. I know people say this is typical of aging, but I know it’s more than that. I also struggle with comprehending simple concepts, whether they are new to me or not. I struggle with holding conversations and putting ideas together. I struggle hard with writing, and this is the most heartbreaking. I have always loved writing. I have kept a diary since I was a little girl. I started blogging back when you had to write your own code. I journal thoughts in my head throughout the day, and sometimes those thoughts actually make it to my written journal. Just today, my laundry folding was interrupted by this blog post forming itself in my head, itching to get out.

Writing is part of who I am, so when I set such an ambitious goal as writing a memoir, having never written a real book before, you can imagine it’s frustrating to feel like you are unable to make any progress. When your brain just refuses to make the necessary connections, it’s very discouraging.

But! I read a meme recently that reminded me that when God calls us to something, he factors in our failures and frailty. So I’m taking that as truth and leaning on Him, always and forever.