Multiple Sclerosis, Running

Can we talk about fatigue?

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This is just getting really old, so I thought I would tell you all about what it’s like, while I’m in the thick of it. I know it’s not going to be like this every day forever and ever, based on my history with MS, but Damn. It’s hard to see the forest for the trees right now. Is that the right phrase? I don’t know, my brain’s low on gas right now…

The most common symptom among MS sufferers is fatigue, and that is what I suffer from the most. I’ve learned to adapt and live with the hearing loss and the vision loss, and the weakness in my left leg, but the fatigue is the Beast I can’t seem to tame. It causes the most trouble the week before my monthly infusion, presumably because my body is running out of the medicine coursing through my veins. The problem is, once I get that infusion, I don’t get some magical burst of energy back. It just sort of slowly creeps back to a manageable level.

I have recently started charting my daily fatigue levels to see 1) if that fourth week after my infusion truly is when I’m at my highest level of fatigue and 2) how long does it usually take to get back to a functional energy level. I’ve just started charting, so it’s way too soon to have any usable data, but I’m hopeful that after a couple months I’ll be able to use what I’ve learned to plan my days better. If I can have more reasonable expectations on myself, than I can stop getting so frustrated.

Today, for example, I started out the day at about a fatigue level 6, on a scale of 1-10, 1 being plenty of energy for everything and 10 being flat out, unable to move. I went to Bible study, ran a quick errand, and came home and took a two-hour nap. Caffeine has almost no effect on me, so coffee is purely for looks. When I woke up from my nap the fatigue was actually worse, at an 8, so I went back to sleep for another hour. Not because sleep helps, but because what else is there to do when it’s such a struggle to move? I could watch tv or read but even my brain is fatigued so I would really just sit there feeling like a vegetable. The beautiful unconsciousness of sleep shields me from falling into depression.

I feel like I let down my family when I have to back out of activities or delay promises I’ve made, but they have yet to complain. In all honesty, I think I’m the only one bothered by this fatigue. My family and friends are always extremely gracious and understanding of me. I need to be just as gracious and understanding of myself. Because this is just a string of bad fatigue days, and they’ll be behind me soon enough. Until they are back again, of course.

***After I’ve had some time to think about this day, it occurred to me that maybe going back for that second nap was the wrong move. Maybe it would have been better if I had gone for a crappy run instead. I was scheduled to run 1.5 miles according to my current training plan, so I had every good reason to do it. After we had dinner tonight (a late, late dinner because my son had wrestling), I bit the bullet and got my miles in on the treadmill. It was hard to start but I kept with it and I’m glad I did. So, I’m going to try to remember that next time this beast rears its ugly head.

Oh! And speaking of my current training plan, I have another big race I’m signed up for, with a fellow friend who is crazy enough to run it with me. It’s a half marathon, and it’s happening at the end of May (because we’re only half crazy, get it??). This week is our first week of training, and so far, she’s doing better at staying on task than I am, but I feel like I gained a little momentum by squeaking out that treadmill run this evening. So here we go, wish me luck!

Memories, Photos

Sentimental things…

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Don’t mind me, I’m just cleaning out my draft folder here. I found this one from January of 2016, with some photos of a few sentimental Items I was saying goodbye to., Marie Kondo-style. Just for funsies, I’m sharing them with you.

The first one is a t-shirt my sister bought for me when I was pregnant with my firstborn. It’s an infant sized shirt that says “I was worth the wait.” I remember bursting into tears when I first saw it.  See, my husband and I were unable to conceive for many years, but after a successful surgery in that sixth year, I was finally pregnant with a son. That son will be 16 years old in a few months and I still believe he was worth the wait.

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This second photo is of a raggedy stuffed teddy bear that I had affectionately named Elizabeth. This is a stuffed toy I loved on for many years when I was a child and I have no idea where I got her from.  I had dressed her in this adorable dress adorned with white lace and blue puppies. Why I had waited until well into my 30s to get rid of her, I’ll never understand, but I remember it being quite a difficult decision. Probably because it truly felt like saying goodbye to a childhood friend. I certainly don’t miss her anymore, but it’s still fun looking back.

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And the last photo, for your viewing pleasure, is of a plate I made in preschool. The kind you draw on a paper circle and they somehow transfer it to a plastic plate. I don’t know how that process worked, but I remember drawing the picture.  A hideous picture of three trees of varying colors, a bright shining yellow sun high above, and a stick person with a big smile and long legs coming out of her head (presumably yours truly) off to the side. My first name and last initial, with a backwards ‘Y”, scrawled underneath. I held on to this plate for as long as I could, until it was accidentally used in the microwave (if you look closely you can see the bubbles). We have a friend who once dubbed it the “pēnī plate” (he didn’t think they looked like trees), and the name survived for many years but unfortunately the plate itself did not.

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So that’s all for today. I have a post about house flooding I still have swirling around in my head and hope to get that written and posted soon. I am having a chill day and am looking forward to the new year, as I hope you are too!

Cochlear implant, Coffee, Friends, Funny story, Punky, Stories

Dead Birds and Dangerous Bugs

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I’ve been mulling this story over in my head for awhile now, trying to figure out how to tell it in a way that conveys the hilarity that I felt when it happened. Here we go!

My friend Tara was coming to visit from out of state. She, her husband Scott and their two sons had moved out of Michigan years ago and it had been some time since I had seen them. They were in town for a few days and she wanted to stop by and catch up. I was so excited for this visit, and for them to meet our new dog, Punky. I was letting the dogs play outside while I waited for my friends’ arrival. I like to do this when company comes over because the dogs can be a bit much and the exercise helps to calm them down (or so I like to believe). Tara and her family arrived, and I was so excited to see them! Scott was dropping Tara off for a few hours while he took the boys to the zoo, but they wanted to come in and say hello first.

Scott and Tara are dog people, so I asked if they wanted to meet our new golden retriever Punky, and of course they did. I let the rambunctious dogs inside and they did their dog greeting thing, wagged their tails, barked obnoxiously, etc. And then this conversation happened…

Scott to me: “It’s a bird.”

I have to stop right here and remind you that I am still half blind and deaf. The cochlear implants are great, but I need to be paying attention in order to hear and understand when people are talking to me. Also, if there are other loud noises happening (e.g. dogs barking), they are pretty useless. In other words, I miss out on a LOT of input. My guess is that Scott had said some things that I did not hear, and those things would have given me the necessary context to understand this bird business. Instead, I was starting from scratch with his statement. Now let’s continue…

Me looking blankly at Scott: “Huh? What’s that?”

Scott: “It’s a bird.”

Me: “What’s a bird?”

Scott: “It’s a bird. It looks like she brought in a bird.”

As understanding crept in and my heart started racing, I frantically scanned the room, looking for the “she” that Scott was referring to and that’s when I saw it. A happy, proud as can be Punky, parading a dead bird around my living room.

That’s when I lost my ever-loving mind. I scooted Punky outside as quickly as possible, not wanting her to drop the dead thing in my house. Once she was outside Scott was able to get her to drop the bird, and I brought him an old grocery bag to put it in. Then we let Punky back inside and resumed our introductions.

“So, how have you been? The boys have grown so much! Are those muffins you brought?” Blah, blah, blah.

Then I noticed Scott and the two boys jerking their heads and arms oddly around, looking up and down and all around. What the hell is going on now? Then I hear someone say, “I think we let in a yellow jacket.”

?@#$@?#%#*&!

I couldn’t find the fly swatter, but the dang thing wouldn’t land anyway. It ended up flying inside one of the window blinds and Scott had to vacuum it out. I didn’t use that vacuum for a few weeks, just to be sure it was dead before I emptied the dust cup (yes, I had to look that term up).

I don’t even remember much after this point because it was just utterly ridiculous, all this happening at once. I had gone in a matter of minutes from the excitement of seeing my friends to full on freaking out that there were dead things and sting-y things in my house. All I could do was laugh at the timing and the absurdity. I’m still laughing now.

Scott and the boys left for the zoo and Tara and I settled in for coffee and muffins and talked for hours. It was so wonderful to catch up with her and if it hadn’t been memorable enough, we’ll always share that memory of how it started off with dead birds and dangerous bugs.

Coffee, Faith, Food, God speaks, Miracles do happen, Music

The Simple Things

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I drafted the following post back in 2017 and I think of the 30 drafts I have stashed over the years, this one still rings true. The good news is that through lots of intensive therapy I have come to find and embrace that self-awareness I was so lacking. I now have a strong sense of what I love and am getting pretty good at embracing it. I praise God every day for the healing He has accomplished in my life.

*****
I sometimes notice the people around me, enjoying things, and it often seems foreign to me. How can they know what they love? It must be really great to have that self-awareness, and to embrace it.

I don’t know if I’m making any sense here, but whatever. All that was to say that lately I’ve been trying to make note of the things that make me smile from the inside, deep down in my soul.

1) Parades. I freaking love parades. I can’t not be giddy watching a parade go by. I think it began when I was introduced to Easter Parade by the girls I used to babysit for. Maybe.

2) Caramel corn. I can’t stop eating the stuff. I lament that any time good snacks come into our home they get eaten before I even realize they are here. Not the caramel corn. That’s all mine. I will wrestle you to the ground for it. And if it has nuts? I’m not afraid to send you to the hospital.

3) Paisley. This is not a new realization, of course. I know I love it, and have for decades, and everyone else knows it too. You could even say that for this list, this one was my first love. It makes my heart flutter. Every time.

4) Led Zeppelin. In particular, Over the Hills and Far Away… something about how it eases you in, seduces you for a minute and a half, and then comes in pounding with those drums. It just gets me every time. There are certainly many other songs to love, like Kashmir, Ocean, or D’yer Mak’er, but Over the Hills was I think what sold me on the band in the first place. And it didn’t hurt that I first started listening to them on vinyl.

5) Sunrises. The rising and setting of the sun are visually similar, and both beautiful, but somehow the rising sun is what really calms my spirit and whispers to my soul. When I am privileged to stop and see the sunrise, I am always, always reminded that the fact that I am here another day is an enormous gift. Oh, and coffee. You can really enjoy a good cup of coffee while staring into the sunrise.
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I still love all those things and have added more since then. Sipping bourbon, writing, singing karaoke, dancing in my kitchen, listening to the mourning doves cooing in my backyard, tending to the lilies in my planters. Lots of simple things bring me joy. Things that have always been around but now I’m finally able to notice them and really enjoy them. I’m three seconds away from breaking into a Barbra Streisand song so I’ll stop here. Have a wonderful night, my friends. This week I challenge you to look for joy in the simple things.

Family, Memories, Music, Writing

Writing and Music Memories

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Hi there! I was on a weekly roll there, posting stories and then…. hard stop. Sorry about that. I got stuck. To be honest, writing about old stories was getting a little, well… old. And not much has happened in the present that seems exciting enough to write about. My daily journals consist of a lot of mundane recaps and daily goals such as: laundry, groceries, nap, read, clean, etc. SUPER boring. But I still think about writing. All. The. Time. Because I am a writer. It’s who I am. I love writing. Always have. Probably always will. I just haven’t been writing anything here on the blog because I haven’t had anything I felt anyone would be interested in.

But awhile ago I stumbled on an old blog of mine (I’ve been blogging since 2003 on various platforms) and it was a lot of silly nonsense. I wrote because I enjoyed it, not because anyone was interested in it. And so I would love to get back to that. The not caring. Just writing because I enjoy it.

So I decided I want to share here a new genre of music I’ve come to love. Now, I have loved Bob Marley since I first heard him in high school, but that’s as far as I delved into reggae. However, this past summer my family and I took a cruise, stopping one day in Jamaica. Lounging in a pool of sapphire blue atop a lush green mountain overlooking the Caribbean Sea was extremely magical, but what I really fell in love with was the music. There was this energetic, positive, vibrant music blasting everywhere. And it makes my heart flutter when I hear it and I can’t help but sway and move to the rhythms. So several weeks back as I was trying to choose some music to get me through another session of folding laundry, I was reminded of Jamaica and searched for a reggae station. Y’all, it immediately brought me back to last summer and I couldn’t stop smiling. Or dancing! It makes housework so much more fun. Every one of you should try it. Really. Jot that down on your to do list. Then let me know what you think. I’ll wait…

Cochlear implant, Deafness, Faith, Health, Hearing Loss, Low vision, Memories, Multiple Sclerosis, Stories, Visually Impaired

The Mayo Clinic

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If you’ve never been to the Mayo Clinic, as I had never been, you might have been just as awe struck as I was. It felt like a theme park for sick people. We had been anxiously awaiting this visit since it was first mentioned by the doctors when I was at my sickest. We felt like our options had been exhausted, and that this was our best hope for some answers. 

We were scheduled to go in late January, at the height of winter storm season in Michigan. We chose to drive because it was much cheaper than flying, and Mike was perfectly comfortable driving the ten hour drive from Michigan to Minnesota. In addition, we didn’t know how long we would be there, because they don’t tell you that. They can estimate, but this is where the fascination for me came into play. They only schedule that first day of appointments. They wait until you are there, until they’ve met with you and run preliminary tests, before they schedule the next round of appointments on the following day. Appointments and procedures with real professionals, scheduled on the fly! They literally take it one. Day. At. A. Time. Everything is handled in this enormous complex with tunnels (so I hear, I never actually noticed any, but that’s not surprising given my state of mind at the time and my poor vision). It’s an incredibly well-oiled machine and I was so impressed, but I don’t ever plan on going back. 

We left on a snowy Monday. The worst of the weather was in Michigan, it got progressively better as we drove through Indiana, and by the time we were in Illinois it was smooth sailing. There wasn’t much traffic through Wisconsin and after ten hours on the road, we arrived in Minnesota to a balmy negative 12 degrees Fahrenheit. It was very cold and a little windy but at least the sun was shining. We checked into our hotel and settled in to rest for our first day of appointments on Tuesday.

On Tuesday our first appointment at the clinic wasn’t until the afternoon, so we took advantage of the extra time and ran some errands. Got the oil changed on the truck, bought some necessary supplies for the week, and had lunch. Then we took the hotel shuttle to the clinic. Very handy. Our first doctor had a ponytail and reminded us both of the tall guy from Penn & Teller, though at the time we couldn’t remember which was which (it was Penn). This doctor asked all sorts of questions and did some basic reflex/sensory testing. He thought all signs pointed to vasculitis, but he needed to do more testing and gather more prior medical records. This whole time Mike was typing everything for me on his laptop, so that I could answer the questions the doctor was asking. We left knowing they wanted an MRI, blood tests, and possibly a plasmapheresis, so we understood we might be there for longer than a week. That was it for the first day, surprisingly, but I was confident we were in good hands.

Wednesday we were up early so I could have blood tests and several eye exams. They put drops in my eyes and took photos inside and out. It wasn’t Glamour Shots but it showed them what they needed to see. We thought we were done for the day but then we got a call from the doctor to come back that afternoon to discuss the results of his research on MRIs and MS. I don’t remember any details of these discussions. What I remember is sitting there, in silence, feeling dazed and overwhelmed.

Thursday I had a very early appointment for an MRI. This MRI was arguably the longest and loudest one I had had to date. Not that I could hear it, because even with my hearing loss they gave me ear plugs, but I could feel the vibrations from the noise. I told the technician afterward that my kids would love to have a picture of the bulldozer that ran over me. I also had an appointment with an ENT in the afternoon. I remember it well. We walked into the waiting room and a woman quickly took me back to the testing area, telling my husband to stay and fill out some paperwork. I told them I needed him with me but they insisted I would be fine. I wasn’t fine. The woman was trying to talk to me, and she was writing things down with a regular pen, which I couldn’t see. At this point I had been having people write for me with sharpie pens, because nothing else was dark enough. I just cried and said, “Can you please just get my husband?” They brought him back and conducted a few hearing tests. The speech recognition tests were impossible for me and I cried some more. The third test was in a separate room. This one was nice because all I had to do was sit with electrodes stuck to my head and wait. It was after this test that they were able to tell me what was happening with my hearing. I simply had a bad connection between my ears and my brain, and cochlear implants would likely work very well for me. This news gave me a lot of hope.

Later that day I met with the doctor again (ponytail Penn) to hear his conclusion about my vision. His determination was that it was permanent. Irreversible. There was nothing they could do to repair the damage to my optic nerves. Mike and I left his office and stood, stunned, in the lobby. I was devastated. I remember resting in my husband’s arms, just sobbing uncontrollably. A woman who had been at the front desk every day that week walked up to us, offering me a box of tissues and an invitation to join her family for dinner. Since we were leaving the next day and I was not exactly in the mood for being around people, we declined. However, she offered to be praying for us, and that really encouraged me. We believe she was Muslim and hoped our God would honor her prayers. 

 I left that day talking of guide dogs and reading Braille but Mike told me to stop. I was getting way ahead of myself, and we would deal with all that if we needed to, but right now we didn’t need to. We had two good pieces of news. One, the doctor had recommended a plasmapheresis when we got home, which they believed would stop any further damage from happening to my optic nerves. And two, I was a perfect candidate for cochlear implants. So, there were things to be hopeful about.

And that was our final consultation! We were driving home the next day. Everyone at Mayo Clinic was extremely helpful and kind. I had hoped for better answers by the end of the week, but I was grateful to learn that I was not dying and that there were steps I could take going forward.

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 😉

Deafness, Faith, Hearing Loss, Music, Stories

Losing Music

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Friends and family who know me know that I have always had a deep love for music. Music is what comforts me, inspires me, brings me joy. Music is my Happy Place. Not being able to hear music was a heartbreaking loss for me. However, in between the tinnitus and the silence, there was a song stuck in my head. What was so miraculous is that it wasn’t a well known song, or one I even remembered singing. This song, with lyrics inspired by Psalm 40, became my mantra. I sang it to myself, in my head mostly, but often when left alone I would hum it softly or belt it out in the shower. The lyrics were so perfect for what I was going through that I considered it my theme song. 

Jesus, Lover of My Soul

Jesus, lover of my soul
Jesus, I will never let you go
You’ve taken me from the miry clay
Set my feet upon the rock
And now I know
I love you
I need you
Though my world may fall I’ll never let you go
My savior
My closest friend
I will worship you until the very end

Daily Snippets

Introducing Mel

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I did a thing last week. I decided I don’t want to be called Mindy anymore. This obviously requires a name change here on the blog because, well, I’m not actually “still Mindy”. I’m still ME, but with a different nickname.

Mel is actually closer to my given name of Melinda. I believe Mel suits me better. It’s a name my husband has been using for as long as he’s known me. And I happen to love it.

To be honest, I’ve never wanted to be called Mindy. I had never been successful at changing it, despite many attempts over the course of my life. This year, I’ve reached a point in my life where I am learning to ask for what I want, and more importantly, figuring out what that even is. This year has been one of great inner transformation for me, and I felt like a name change was a good way to reflect that transformation. I’m asking people to call me Mel from now on.

The new title of the blog is Meant to be Mel, and I’ve changed the url to reflect that, but I set up a redirect for stillmindy.com and will leave that up for awhile until that domain expires. Now I just have to train myself to stop answering to Mindy. Old habits die hard!

Deafness, Disability, Faith, Funny story, Hearing Loss, Multiple Sclerosis, Stories, Visually Impaired

Fear and getting lost in my own home

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This is another story that took place in late 2013 when I was still very new to vision loss and hearing loss. I have quite a few stories packed away, and plan to bring some out here on the blog, once a week or so. This one is quite funny to think about in retrospect but at the time it felt quite terrifying…

Our kids were gone to Grandma’s for the weekend (my mother-in-law) and I woke up in the middle of the night to use the bathroom. For some reason I used the one in the hallway, rather than the master bathroom. I’m not sure why, and it doesn’t really matter, only that this wouldn’t have happened otherwise.

Remember now that I can’t see well, I’m completely deaf, and all the lights are off so it’s pitch dark. I made it to the bathroom without issue, but when I turned off the bathroom light and stepped into the hallway I was rather disoriented. I knew enough to turn to the right, having lived in this house for fifteen years, but then I kept walking forward into my room. Or what I thought was my room. When I didn’t find my bed, I panicked. Legitimate, full on panic. I was reaching around trying to discern where I was but I had no idea. I was turning and flailing expecting to find our closet, a bed. a dresser, anything that would register familiar.

And then I started screaming for my husband. “Mike, Mike! Help! I don’t know where I am! MIKE! I couldn’t hear myself, or any response from him, of course, so I was just hoping I was screaming loud enough to wake him, and then I would wait a minute for him to come to me. When he didn’t come, I would start screaming again, to be sure he would know where to find me.

Did I mention this was an 1100 square foot ranch with three bedrooms? Not an escape room or corn maze. Not rocket science.

So this screaming and waiting went on for several more minutes, maybe 10 or 15, until I decided it wasn’t working and I was just going to have to sleep right there on the floor, wherever that was. So I sat down in defeat. That’s when I felt the rug, and I realized then by the texture that it was the race car rug in my son’s room. Right next door to mine. I was so relieved I didn’t even bother laughing at myself. I’ve had plenty of time to do that since. I just got up, felt around for the doorway I had just come through, and found my way to my bedroom and safely into my bed. I laid a hand gently on my husband’s chest, wondering why he hadn’t come to my aid. I could feel the vibrations; he was snoring. He hadn’t even heard me screaming. He slept right through it. I didn’t tell him about the incident until five years later. He wasn’t even sorry, can you believe that?

This journey I’ve been on since 2013, adjusting to life with disabilities, learning how to be me with limited vision and deafness, has taught me so many things, but one of the biggest lessons I’ve learned is that God isn’t always (almost never, if you ask me) going to tell you His plans. He may be keeping you in the dark about all the details and sometimes you just have to sit and wait until He shows you where to go, one grueling step at a time. And no matter how lost you feel, you might just find you’ve been in the right place all along.

Deaf and half-blind runner with multiple sclerosis