Category Archives: Housekeeping

Weekly Post #9 – December 13, 2024

Tired of my daily updates yet? I am, a little, but I’m going to keep it up for awhile. Today was mostly uneventful, but we had some wins. I slept late, until 10:30, because I’m still recovering from three consecutive days of full activity. I was feeling really sore, and my legs were hurting a little from the cold weather outside, but I took a shower and that warmed me up a bit, so it relieved the pain. Nerve pain is no fun, but I’m glad that heat and movement are two things that help.

Daily Post #8 – December 12, 2024

Sleeping Bear Training Week 6

Health Update (Warning: this is a long one)

I have great news. My fatigue levels have been going steadily down, my left leg has become way more responsive, and as of today, I am feeling zero nerve pain on my back! I can cautiously say I am back to my previous “normal”.

I first noticed the energy levels coming back a few days ago. I had been walking around the house, originally for accomplishing only necessary tasks like using the restroom and drinking coffee. But somehow along the way I realized I was *also* picking things up and putting them away, cleaning small problem areas in various rooms. It was only when my daughter said to me, “you need to sit down”, that I realized I had been doing anything extra. I thought she was telling me to sit down so I wouldn’t spill my coffee (as I often do), but she said it because she noticed I was audibly out of breath from walking up the stairs.  That was the moment it dawned on me. I had been cleaning, and that walk up the stairs to my bedroom was the last straw for my lungs, apparently.

Let me just pause the update right here and share with you the poignant realization that came to me at this time. What dawned on me was this: I am not a lazy person. I do the things that need to be done, when I am able. Even more surprising, I don’t often have to think about it; I just do it. This realization gave me such pause because one of the things I’ve been struggling with over these several weeks of constant fatigue is the feeling like I’m not measuring up because I’m not doing the things I normally do. I was feeling like an unproductive and lazy person. I don’t know why the voices in my head tell me such awful lies, but they do. So while I was happy to have some energy creeping back, I was also sad to think that all that time when I could have been resting peacefully and allowing my body to heal from this wretched attack on my nerves, instead I was beating myself up for not being more productive. I think we like to call this, “stinkin’ thinkin'”, and it’s got to stop.

So I’m putting this here for two reasons. One – so that I can come back to it when those awful thoughts inevitably come back to haunt me and two – so that you can learn from my mistakes and be kinder to yourself as well.

Now back to my health update…

When I realized all these symptoms that had crept up weren’t going away, I had reached out to my neurologist’s office. They ordered lab tests, which all came back normal. They would have liked to see current MRIs to check for active lesions on my brain and spine, but since I have cochlear implants that’s not an option for me. Some newer cochlear implants are safe for certain MRI machines, but not mine. I would have to have them surgically removed first. Not happening, that’s overkill. So, since they couldn’t get updated MRIs, we just moved forward with treating my symptoms. The nurse practitioner talked with me for over an hour in her office, discussing diet, exercise, sleep, stress levels. Through our discussion I think we landed on two possible culprits, poor sleep and high stress.

We’ve addressed my poor sleep quality with a small nightly dose of gabapentin. I have taken this in the past at a higher dose for nerve pain in my legs, but never on a consistent basis. She wanted me to take a small dose every night to let it build up in my system, knowing it would help me sleep but also may help with the nerve pain in my back (the technical term is dysesthesia, if you care to look it up.) The gabapentin did not have a noticeable effect on the dysesthesia. However, it is absolutely improving my sleep quality and I think that has been the #1 factor in the abatement of all my symptoms.

Sleep is an easier fix than the second factor. One of the first questions the neurologist’s assistant had asked me was, “Have you had an increase in stress level?”. Big Fat Sigh. You could say that. I told her we had recently lost a close friend to cancer. Our friend Dave passed away in January, after fighting an aggressive cancer for five months. Five months that felt like both an eternity and a blink of an eye. Dave had been like a brother to us for 25 years. His family is our family. He was only 47, and he’s left behind a beautiful and amazing wife and two grown children. He was my husband’s best friend. His wife Sarah, one of my best friends. His absence is still felt daily in our home.

I shared with Sarah shortly after his passing that I didn’t feel like I had the right to be so sad because he wasn’t MY husband. He wasn’t MY best friend. But she – so graciously and that’s why I love her so much – told me we all had the right to grieve. We all grieve in different ways, and that’s okay.

I didn’t intend for this post to be about anything other than my health update, but it has taken this turn and I’m going with it. What I’m acknowledging is that Dave’s illness and passing was more stressful than I realized. Prior to this I was fortunate to say I hadn’t dealt a whole lot with death. I hadn’t lost a lot of people I was very close with. My immediate family and close friends are all still living. But Dave was close, and I know this because his absence is still felt here in our home. Reminders of him are everywhere. When we were searching for old photos of him for his memorial service, my husband and I joked that we had more pictures of his kids than ours. We have so many great stories, memories of time spent with him. We will never forget him. We are sad, heartbroken, but we know he is now at peace and no longer suffering. And if he were reading this he would say let’s move on Mel, this is depressing.

Okay? Okay. Back to the health update…

So, externally, I can acknowledge that my grief changed the way I was eating, drinking, sleeping, exercising. All the normal, healthy habits I had worked to establish went out the window. And internally, I was holding in a lot of emotional pain. I still am somewhat, but I’m working through all that with prayer, journaling, therapy, connecting with friends and family. My heart is healing.

I have been getting back to my healthy habits, but the reality is that my body tends to delay in its reactions to stress. I am generally a slow processor – “don’t rush me!” – and this translates neurologically as well. In fact, when I had the BIG relapse in 2013 that left me deaf and half blind, it all started one week after I completed my last college class to complete my bachelor’s degree. I had been under a lot of stress, and my body held that in until after it was over. So I think that’s kind of what has been happening now. I was holding in a lot of that stress and grief and when I started to let go of it, my body reacted. Stress and M.S. are a really bad combo. I need to remember that moving forward and be more mindful of my stress levels. Know better, do better. Be kind to yourself, and rest when you need it. That lesson is for both me and you. Do you hear me? It’s for all of us. Shalom, my friends. Shalom.

Reading and Running

Lately, I haven’t had anything very inspirational I’ve felt like writing. So I just haven’t been writing. For fear of boring you with all the details of my day to day. But the alternative to writing the mundane hodgepodge is to not write at all, and that’s maybe not great either. Because as I learned in a recent audio book I just finished “reading” (The Shallows, by Nicholas Carr, if you love science!), your brain is like a muscle. If you don’t use parts of it, they shrink and it becomes harder to access them down the road. So I’m exercising my writing muscle by writing even when I don’t have anything to write about. And as I’m writing, I’m sure something will come to mind. That’s always how it seems to work, anyway.

I’ve really been craving dark chocolate. I don’t know why I never keep any around the house.

I have not been running these past couple of weeks. I think after the bout of fatigue following Thanksgiving, I sort of fell out of the habit. I’m hoping to get back into it this weekend though. If the weather cooperates, of course. Treadmill running still sucks.

BUT! I do want to tell you how the Turkey Trot 5k went, but I want to be careful not to toot my own horn too loudly. So you know I was training, sort of, trying to increase my speed, and was hoping to beat my previous PR of 38:24. But even if I didn’t beat my PR, this was a memorable race. I ran it with my son, who is much faster than I am. I wished him luck and left him at the head of the pack with all the seriously fast runners, and scooted back as far as I could because I knew otherwise I would get trampled when the race started. This race was huge. I think the final count was around 5000 people. Maybe not large by other people’s standards, but it was by far the biggest 5k I had ever run. So with that many people the energy was pretty awesome.

The gun went off and I started running, and people immediately started zooming past me. I would have moved to the side to get out of the way, but I was so worried about tripping I stayed in the middle of the road where I knew there would be fewer potholes and cracks. Did I mention this was the first race I have ever run solo? No guide runners, no sign on my back to alert people that I was a deaf/blind runner. I had this sort of overwhelming sense – throughout the race – that I belonged there. That I was a real runner just like the rest of them. Note that I had not realized until this moment that I ever felt like I wasn’t one of them. So this was a brand new revelation, and I believe it is what propelled me forward, as fast as my feet would let me.

I was getting periodic updates from Runkeeper to tell me of my current speed, but I wasn’t paying attention enough to calculate what my average was looking like. I was just trying to enjoy the moment. So when I reached the finish and saw that my time was just coming up on 34 minutes, I was flabbergasted. My finish time was 34:03 – a full four minutes and 21 seconds faster than my last PR in May. I still don’t even understand how that is humanly possible. Not for me, at least, a woman with M.S. And certainly not in that short of a time period.

I’m still in a mild state of disbelief over the whole thing, but I’m now finally able to process it a bit more. I think the difference for that race, and my speed training on the treadmill leading up to it, is that I dared to run a pace that was just a bit past my comfort zone. Then when that felt comfortable, I pushed a little harder. So if I can just remember to push myself a little bit each time I’m out there, push the envelope so to speak, I know I can complete a full marathon next year, which is my next big running goal. I just have to be careful to be wise about it, and not push myself too hard or too fast. Know my limits, listen to my body and rest when it needs rest. I’ve learned so much this year about my capabilities, both mentally and physically, that I feel ready for this next step.

So I guess this post ended up being mostly about running. Sorry, not sorry. What else? Christmas is coming! I’m not ready, but who ever is? I’ll be ready when I need to be. I’ve been keeping busy with Bible Study Fellowship, bookkeeping for the church, and taking care of the home. Sadly the home sometimes takes a backseat to the other stuff but I’m working on fixing that. In my down time, my relaxing time, I’m doing a lot of crocheting and reading. I have a growing list of books I’ve started reading but couldn’t finish before the library’s digital copy expired, so I’m one by one working through knocking those off the Goodreads list. Not to say that like it’s a chore or anything. I still love my books.

That’s all for now folks! Tell me, what’s your favorite book to read over the holiday season?

Busy day, busy week

I told a friend the other day, “I don’t know how you people do it!” And by “you people”, I mean those who do lots of things, all in succession, repeatedly over time. Because dang. I am managing, it’s fine, but I lived in my warm cocoon of permanent disability for so long I almost forgot what it was like to have a full schedule. Like normal people.

I’m still permanently disabled, of course, but my new energy levels allow me to do considerably more, and I’m just now feeling like I’m getting the hang of it. Although I have been feeling lately that my fatigue is trying to creep back in and I am almost certain it’s because I haven’t been running. I plan to rectify that situation soon.

Today is an especially busy day because I had a dentist appointment this morning to get a crown set up, and this afternoon I have my regular infusion for my MS medication. It’s noon and my face is still half numb from the dental procedure this morning so it was very strange eating my lunch. I’m tempted to get a second cup of coffee but if I do I’ll have to do drink it through a straw. I’m kind of looking forward to the infusion because it will be a forced opportunity to take a nap. Not that I ever need forcing, of course. Naps are the bomb diggity.

My daughter turned 10 on Tuesday (yay for double digits!) and she is having a few friends over Friday night for a sleepover so I’ll be spending the day tomorrow doing some catch up cleaning and preparing the food for dinner. She chose tacos even after my multiple suggestions for ordering pizza, so I guess I’m cooking. Anything for my birthday girl. We all love tacos, so it’s cool. Before dinner though, we’re taking the girls to Playing Picasso so they can do some pottery painting. Then we’ll go back home and eat tacos, then send the girls in the basement so they can watch Harry Potter and be their silly selves without judgment from big brother. Birthdays are fun, don’t you think?

I’m hoping to catch up more on writing in the next few days, to tell you about what I heard God speaking to me at the abbey last weekend, and maybe some other random musings about that habits I’m hoping to hone (like writing). Growth and change, but all good stuff going on here.

Finding Contentment

I’ve been fartin’ around on Facebook all morning, and then I did some filing, put away clean dishes from the dishwasher, and now I’m letting my phone charge back up so I can go for a run this afternoon. I could really go for a nap but I pretty much always feel better after a run so I’m opting for that instead.

I’ve allowed myself to get really busy with all the commitments I took on, and I think I’m finally getting a handle on managing it without moving around like a headless chicken. I’m finding the key is to allow myself to relax from time to time, and when I say that I mean REAL relaxing, not the fake kind. I’m giving myself permission to sit with my feet up, read a book or crochet, sip some coffee, and NOT feel guilty. It’s really nice, but it’s strange how difficult it is for me sometimes. It does take some self-talking to be totally okay with it. Otherwise I’m just pretending to relax. I may be sitting, but I’m secretly mulling over all the things I “should” be doing at that moment. So the Real Relaxing is nice. Very therapeutic.

I had an interesting thought yesterday while listening to the lecture at Bible Study Fellowship. We were studying the story of the lame beggar at the temple gates in the book of Acts, and the lecturer said that when the man was healed, his life became better because his disability was removed. Something about the way she worded it struck me, and a voice in my heart was asking,

“Mindy, would your life be better if your disability was removed?”

I honestly believe the answer to that question is no. As much as I grieve what I’ve lost, I am even more grateful for what it has added to my life. It has made me a more patient and compassionate person. It has strengthened bonds between my family members and my friends. It has introduced me to new people and new ideas. It has stretched me in so many ways to move outside of my comfort zone. But the most important thing? It’s that God is glorified through all He is doing through me. Because it’s certainly not me. I’m just following His directions. That is the most valuable outcome of all this, and what I have been praying for from the beginning.

As I’ve struggled over these past 6 years with my disability I’ve been trying to find a new normal or a base comfort level. What I realized yesterday is that I am finally at a place of contentment. I am finally at home again in this body and I am content to be where I am. Fully and completely. Hallelujah. Amen?

John 9:3 ESV “but that the works of God might be displayed in Him.”

Retraining my brain

I am starting to learn, or re-learn perhaps, that I can make up my own mind and I can choose what and how I think about things. Take laundry, for example (You have my permission to leave now, if you wish. I will understand.)

I abhor folding laundry. I don’t know why. It’s not even the stinkiest of the household chores on my plate. Really. Dishes have dried food, toilets have you-know-what, showers have scum. But folding clothes is a cinch because the clothes are clean. We’re just folding and putting away. What’s the big deal? Yet, I love folding towels. This is an odd phenomenon. There’s not much difference between towels and clothing.

So, I tried to figure out what it is about folding towels that I enjoy, to see if I could apply that same logic to folding my clothes, and thus make it more enjoyable. Or at least not something to dread. I like that for each type and size of towel I have a particular way I fold them, so that they will fit in their place. So once I’m done I have all these neat piles/groups of towels. And I still don’t know why that seems to appeal to me, but the fact that it does means I could probably be looking at my clothing in the same manner. I have different types of clothing but I can group them together and fold each type a similar way so that they all end up in nice neat matching piles and they fit into their homes properly. (If you think this is sounding very Marie Kondo-like I’ll take that as a compliment, thank you very much.) So if I remember that I have a special system for folding the clothes and make it feel more like a game, it feels much less like a chore. And therefore not something I dread and put off doing.

The other thing is that I always only ever have one basket of towels to fold at a time. With clothing this is almost never the case. However, I could trick my brain by just setting out one basket at a time, and only think of that one until it’s done and put away. Then bring out the next. I could hide any extra baskets of clothes that need folding until it’s their turn to be folded. Thus tricking my brain and not feeling so overwhelmed. Because procrastination is often borne out of the frustration of being overwhelmed, right?

I know that’s just about laundry and that’s silly and not so important, but I find it very interesting that we can train our brains to see things certain ways. I believe that’s a crucial piece of information. I have found it extremely helpful during moments of anxiety, to stop and think about how my thoughts arrived at the place they did. If you know the path they took, you can choose to reroute them. And that makes all the difference. Telling yourself something isn’t the end of the world, whether you believe it or not at the time, is the first step to convincing yourself that it’s not the end of the world.

Hey! Don’t sweat the small stuff, kid. And remember, it’s all small stuff.

Q: How much fun is doing your laundry?
A: Loads

I’ve been crocheting

I’ve been busy, but not really busy. What I’ve been busy NOT really doing, is all the things I want to do, like taking care of our home and writing my book. What I’ve been doing instead is playing Farmville. And crocheting. But at least the crocheting serves a good purpose. See, I’m making hats with all the leftover yarn in my possession, and I plan to give them to the cancer center where I get my monthly infusions. I noticed this last infusion that they had a bunch laid out for people to take and when I asked about them they said they were from volunteers, and they can always use more so they would be happy to have me donate. Hats are fun because you can play around with different patterns and if you don’t like it, you know quick enough and you can just undo and start again with a different pattern. And I’m so thrilled I found a place to make them for. I love crocheting, it’s like therapy for me, and even better if it’s going toward a good cause.

I went for a run yesterday after a sort of long hiatus and it felt really good. I need to get better at running on a regular basis. A friend and I are planning to run a half marathon together next fall so I have something to work towards. I think she’s been a lot more disciplined than I am at the training, and she has five kids! So I have literally zero valid excuses. Unless you count the MS, but I don’t ever like to give it that much credit. There may be some day down the road MS decides to take away my ability to run, but until then, I need to do it. Because I can. And because it’s good for my physical and mental health.

As for the book, I am still writing it and I suppose you could say I’ve made good progress, but I kind of got stuck. I don’t know where to go next. So I’m giving it time and praying that I get some more inspiration to write more. There’s no question I have a lot to say, and the story I’m ultimately trying to tell has lots of details. It’s just that my mind doesn’t work as well as it used to and it’s hard to make connections. Disjointed, I suppose is the best description of my cache of memories. I’ll get there though. I’m persistent and stubborn and I refuse to give up.

So we are in December, folks! Did you know? Which means Christmas and time with family, and snow. We’ve purchased all our gifts for the kids via mail order (hello Amazon Prime!), and I believe most of them have arrived, so I think I might wrap them up early so I don’t feel like I have to rush to do it at the last minute. Plus I love the look of wrapped presents. We tried not to go overboard with the kids this year, but I’m still excited for Christmas morning. We all understand and recognize that Christmas is all about celebrating Jesus, but we are still human and enjoy seeing our kids light up when they open their presents. I kind of feel like God has a similar sense of joy when He gives us good gifts. Maybe. I’ll have to ask Him some day.

What else? I’ve still been baking cookies. It’s been a lot of fun to get that love back, and I have a lot of people around who love cookies and can appreciate them. I’m a one trick pony with the chocolate chip though. I tried to make something else and it totally flopped. Tasted fine, but didn’t set up like they were supposed to. So, kind of a literal flop. But I suppose cookies don’t really have to look good as long as they taste amazing, right? It’s all about the flavor. I’ve got that awesome vanilla from Mexico and dark chocolate chips so I’m due for another batch or three in the next few days. Come on over! I’ll make cookies and coffee!

Another random, lame update

It’s Wednesday. I had a great visit with my neurologist this morning. It was nice to be able to tell her about all of the positive changes I’ve been making and my lack of MS symptoms. However, I did bring up my concerns with brain fog. A friend shared a really great article the other day about this, and it very eloquently listed what people with chronic illness experience. Sadly, it’s not just limited to people with MS. I am walking great, I have no fatigue, no pain (unless you count the occasional headache), and I’m overall feeling really fantastic. However, every day, throughout the days, I have issues with short term memory loss and cognitive function. I can’t tell you how many times I’ve walked up the stairs and forgotten why I was there. I will often use a wrong word or name when talking with people, and not realize it. Sometimes even, I’ll forget what I’m talking about mid-sentence. And friends and family will encourage me that this is just a normal part of aging and that they experience it too. Which is nice, and appreciated for sure, but I really don’t believe that they experience this phenomenon with the frequency I do. So I told my neurologist about this and she said it may or not be MS, but there are ways to check, starting with testing my blood to see if some of my levels are out of whack. If that’s the case, I suppose it’s a simple fix with supplements. If not, there is always the option of memory testing and exercises. I had no idea that sort of thing existed, so it gave me some hope that this is a problem that has been addressed by the medical community, and I’m not coming in with some sort of weird cognitive mystery.

In other news, I slacked on laundry for one measly day and it magically piled up and threatened to take over my bedroom. I folded (and put away!) five loads of laundry today and now I would love to nap but I need to stay awake so I can answer questions for my grocery shopper, and then be up when she delivers my groceries. I LOVE grocery delivery, people. Love it.

So I think I’m going to make a glass of sweet tea and read a book or do some crocheting while I wait.