Category Archives: Multiple Sclerosis

He hears me

Last night as I lay in bed I asked God for help. Nothing fancy. Just that – please help me. I’m feeling lost and unwell and discouraged, and I need your help. Thank you, amen.

And then I got up this morning and read my morning devotional from Our Daily Bread: https://odb.org/2019/01/02/its-good-to-ask/

I don’t think this could have been any more relevant to how I’ve been feeling lately. The scripture alone spoke volumes to my heart. From Psalm 143:4-11: “Therefore my spirit faints within me”, “I stretch out my hands to you; my soul thirsts for you like a parched land.” “I have fled to you for refuge. Teach me to do your will, for you are my God!” (I love the Psalms. I feel like David and I would have been friends.)

To give you some specifics as to why I’ve been feeling down in the dumps – full disclosure is a strength of mine lol – my brain is foggy. My body hurts. I get random pains on my left side, both the sharp kind and the throbbing kind. I’m still sore from a long car ride two days ago, and I’m not sure how long that will last. I slept ten hours last night and I’m still tired. Even after coffee. I don’t remember what “feeling rested” feels like. Sure, part of this may be aging, but more likely all of this is exacerbated by the M.S. Multiple sclerosis has destroyed my nerves and while most days I look just fine, underneath everything is going haywire. And I can deal with the inconvenience, but the permanence scares me. There is no cure. It’s here to stay. But I can decide how I want to look at it. I can decide to live in fear of the unknown of the future, or I can decide to accept how it affects me today and find ways to enjoy life despite it.  I need to choose the latter.

But back to this morning’s message. What I’m learning here is that sometimes we don’t need concrete answers. Sometimes it’s enough comfort to know that we are not alone, and to know that God is listening to our prayers. I am encouraged today. Yes, I’m still in a gray sort of mood, and my body is still not cooperating like I want it to, but there is a light shining through the gray, and that is Jesus. So I’m just going to keep my eyes on Him and trust Him to guide me through to wherever it is He wants me to go. One. Day. At. A. Time.

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Distraction

Can I just be honest right now? Because of course, everything else I’ve written on this blog is completely made up.  Just kidding. But seriously. I want to be lazy. I want to abandon my responsibilities and sit, curled up on the couch all day crocheting or reading or playing Farmville. But there’s this nagging voice, and my hunch is that it is the Holy Spirit and I don’t want to admit it, that says I was made for more, and that being lazy is not God’s purpose for me. I know that God places value in rest, that He commands it even, but how do I know when I’m taking it too far? I wish I had a cut and dried prescription that says you need ‘x’ amount of rest on these days, and ‘x’ amount of time you ought to be working. It’s probably true that I need more rest than the average 40 year old woman, since I have MS, but that doesn’t really make this dilemma any easier to solve. I’m in better health than your average woman with MS, so there’s no template for me to go by. Not that I think there should be one. I’m just thinking out loud here.

Journaling is very helpful. It helps me focus, and especially helps because I treat it like a prayer. All of my journaling is really just a conversation between me and God, and He often speaks to me through my journaling. He probably speaks to me a lot more often than that, of course, I just don’t hear it because I’m distracted by everything around me. But when I’m typing, there’s no distraction. I’m entirely focused on the conversation.

So what I feel like God has been whispering to me over the past several months (yes, I’m a slow learner) is that I am too distracted. So I asked for His help and guidance with life and time management and finding a balance between work and rest and all the other stuff I want to do, like writing my book, running, baking cookies and crocheting.

This is so silly, but the biggest distraction I’ve allowed into my life is a little game called Farmville 2. Heard of it? It’s super addictive because there are always things to do, missions to complete, challenges to meet. And it’s fun, but it sucks the life out of you. Or at least it does for me. I’m sure there are people who are able to balance games like this with real life, but I’m not one of them. I am the demographic they built this game for. I know they devote lots of money into research to know how to keep people addicted to their games in the hopes they will spend money, but I never spend money in the game. I am firm about that rule. So the joke’s on them, right? Wrong. Because I have still let it steal hours and hours, days even, of my life. I’ve decided I’m done with it. For good, I hope. Please.

Romans 7:15 ESV “For I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.”

Hebrews 12:1 NIV “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of our faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”

I feel better, I think. Last time I uninstalled the game I think I made it a full three days. We’ll see if I can make it longer than that this time. The last time, I hope. Gee whiz.

Victories over anxiety

I’ve struggled with extreme anxiety for the last several years but I had a breakthrough and I thought I would share it here. Yesterday was Halloween, so we had a couple families from church joining us for trick-or-treating. They live out in the country just a few miles west of us, and we are in your typical neighborhood with lots of kids and plenty of free candy to be grabbed. So around 5:30, a half hour before go-time, I was putting out snacks for our guests and grilling cheese sandwiches for the family. Our friends and their kids started showing up while I was cooking, and here’s where I noticed the difference. In hindsight, of course. After it was all over, I realized that through all that noise and chaos I remained calm, without even having to tell myself to. And not just calm, but actually enjoying having everyone there! The kids had a fantastic time, the weather was perfect, and the night felt like a true success all around.

Those who know me best know this is a huge thing for me. I’ve had some pretty big struggles with chaotic situations, leading to crying fits and panic attacks. But for the past year I’ve been on a low dose of medication and I’ve been practicing breathing techniques and really evaluating my thought processes every time anxiety rears its ugly head. And last night showed me that all of this has been working!

So that has me a little bit on cloud nine. The downside – cuz sometimes there has to be a downside – is that I must have overdone it yesterday, because I’m in a lot of pain today. It started last night with my left calf and foot, and today it has spread all the way up my leg and jumped up to my left arm. It’s a dull throbbing deep in the muscle tissue that I can only assume is nerve pain, so I’m praying a good night’s rest will make it go away. If not, I’m hoping a quick morning run will help get all those muscles stretched out and warmed up.

I can’t believe it’s only Thursday. All day I kept thinking it was Friday. Because I’m done with this week. Done, I tell ya. Stick a fork in me, I’m done!

My first 10k and my 40th winter

I logged on here to share my struggles with the coming of winter and cold weather and then remembered I hadn’t blogged about my 10k race last weekend. So we’ll take care of both here, if you don’t mind.

Yes. The cold weather. I don’t hate it. I love winter. I grew up in Michigan and I love all the seasons, but winter is a favorite. However, my body does not love it. It really resists the change. So as we are crossing over into colder temperatures, my body is screaming at me in protest. My joints ache, my muscles spasm, I have random throbbing nerve pain, and I’m just plain ol’ tired. All I want to do is curl up in a couple warm blankets and hibernate the days away. Which I could totally do, if it weren’t for all the things that need to be done. I’m behind on the laundry, dishes are constantly needing to be washed, children and the hubby like to eat once in awhile. Oh and I have doctor appointments to set and bills to pay. So now that I’ve pushed all of those tasks to Friday, it’s a pile threatening to overwhelm me. Argh. One day at a time, Mindy. One day at a time.

And then there’s the race! I actually ran the 10k I had set out to do, and I ran it in just under 90 minutes. An hour and 26 minutes, to be exact. I keep saying to people though, it was so much harder than I had expected it to be. But I don’t give up. My dad took a video of me finishing and I look incredibly hit up and worn down, as if I might possibly be actually dying, but then a minute after the finish I was smiling and laughing. Because I had finished. On my own two feet.

What was really extra special about this race is that I had my dear friend, Staci, running right by my side the whole way. She was my eyes and ears, to make sure I stayed on the course. It was wonderful to have her there next to me. Also, my brother Brett and sister Kari ran it as well, though they are faster so they ran ahead and met me at the finish line. My dad and younger brother, Josh, were there to spectate, so it was really a sort of family affair, and they were all celebrating with me. I think they all understand how far I’ve come and can truly appreciate what a victory it is for me. I could not have done any of this without their support and encouragement along the way. It was an extremely memorable day.

In the aftermath of that difficult race I was saying I would probably not be running a half marathon any time soon, as I had previously hoped. It just seemed too daunting. But then I was chatting with a friend on Wednesday and somehow we both decided we would train together to run a half marathon in the spring. So we will see how this goes! Training through the winter will be more of a challenge, but having a friend doing the training with me to hold me accountable should help.

I saw my neuro-ophthalmologist this week and shared with him my running victories and plans, and he cautioned me about training too hard. He suggested I talk to my primary neurologist for advice because she’s a runner and could give me some sound advice for training with multiple sclerosis. It’s a tricky thing, to find a balance so that I’m training enough to be prepared, but not so hard that I throw myself into a relapse.

I can’t think how to properly wrap up today’s post so I will just wish you all a Happy Friday! Have a great weekend!

Have I mentioned fatigue lately?

It’s been awhile since I’ve talked about fatigue. So long, in fact, that had forgotten how debilitating it is.  But then it hit me, like a velvet hammer, and knocked me off my feet. I should have seen it coming, really. I had been cheating on my vegan diet. First it was a little bit of meat here and there, and then the cheese. Oh, how I missed the cheese! Creamy, cheesy pasta was my downfall. I had no stomach issues, which is what I had been expecting. What I had not expected was the fatigue. But it came, and though I’m back on my vegan diet, the fatigue is reluctant to leave.

I’m struggling. Struggling and sluggish. I’m still waking up early to be with the kids before school, but that’s been more of a challenge. I set my smart watch with alarms every 15 minutes after the initial 5:30 alarm, so if (when, rather) I turn it off and fail to get up, it wakes me up again in another 15 minutes. Since there is no snooze option on the smart watch, this works beautifully. So I get up, power through making sure the kids get off to their school buses, and then I go back to bed. Because when I try to stay up and do things, my body and mind are resisting so strongly. And when they resist that strongly, it starts to bleed into my soul and spirit and I risk entering that awful state of depression. So I rest when my body says to rest. And I pray that this doesn’t continue for long.

I know this is MS and it’s very common, but I felt like I had it beat, you know? So I’m trying not to feel defeated. I’m trying to be positive and believe that I can beat it once again. Because I cannot function like this. I simply can’t. It’s no way to live.

Okay, this is a depressing entry, I know. But please know that even through these hard days I am reminded continually that Jesus is my strength and that gives me endless hope. For reals.

Rainy days

It’s raining today. Storming, actually. It’s been awhile since we had a thunderstorm during the day like this. We’ve had a couple overnight, but those are no fun because I can’t hear the thunder. I don’t wear my cochlear implants overnight. Usually my daughter tells me all about the storms the next day because though she usually sleeps soundly, she is sensitive to the noise. That and she worries about lightning striking and all that. So it makes for rough nights for her, while I secretly envy that she can hear the thunder.

So. Today’s storm is nice. It’s dark and cloudy though, which makes me want to go back to bed (which I did) and stay in my pajamas all day (which I am). I’m also roasting a butternut squash to make soup, so the house smells like autumn. My sister and I have our annual retreat to the monastery this weekend, and this year we decided against planning an elaborate menu and instead are each bringing a homemade soup. We think between soup, salad, and snacks, we should be set for the weekend.

My plan for this year’s retreat is to get a big head start on my book. I want to read through the past five years of journals in order to get an outline or map of sorts of what I’m going to say. That’s a giant task and not something I feel like I can do sufficiently while I’m here at home. Distractions and all. I am very easily distracted.

I still feel like I have this nagging voice that tells me I can’t write a book, not one worth publishing anyhow. That voice I need to just keep telling to shut up. Lots of people less qualified than me have written books so I have no reason to believe that voice.

What else is going on? I started leading Financial Peace University this week for my church. We have a small group but it happens to be very diverse. People from every walk of life. Newlyweds, single, married with kids, empty nesters. It should make for some really interesting discussions as the weeks go on. I’m very excited to be doing this class. For one thing, I needed the refresher, for sure. But also it just feels good to be able to give back and serve God in an area I feel like He’s given me a passion for. I was a ball of nerves this first week, because my vision loss and difficulty hearing still give me great social anxiety, but everyone was extremely understanding and gracious. I’m confident it’s going to be a life-changing class for everyone.

Speaking of social anxiety, I’m also in a women’s weekly Bible study and yesterday was my first time going. I attended last year and loved it so much, I’m doing it again. However, I had a lot of trouble hearing people in the discussions as well as reading the materials they hand out every week. There’s not a whole lot I can do about the discussion because you can’t expect to completely retrain people to speak a different way just for that one hour a week, so I’m learning this is an area I have to accept not being able to hear everything. I just have to accept and be thankful for the words I CAN hear.

As for the lesson handouts, I had been scanning them into pdfs every week so that I could read them in high contrast on my computer or tablet. That was kind of a pain, but it worked well. It only occurred to me after the class had ended that I should have been scanning my answers to the questions as well, because every week I would get to class and struggle to read my answers during the class discussion. This year I am super excited because they offer the lessons and questions in pdf format, so I don’t have to do all the scanning! It may be hard for others to understand my level of joy here, because until you’re faced with the daily difficulty in seeing and hearing things, you just can’t imagine it. I know it’s something I took for granted, for sure. If you are reading this and you have fully functioning eyes and ears, will you please just take a moment to thank the Lord? Because not everybody has that luxury. It’s so hard, people. Not impossible, just hard.

Well, my squash is roasted so I need to go saute some shallots and garlic and get the soup assembled. After that perhaps I’ll do some crocheting. I’m on my third of thirteen afghans for each of the nieces and nephews. A perfect rainy day activity, wouldn’t you say?

Drop me in the river

My daughter and I went camping last weekend. We left on Wednesday and came back Sunday so it was a little more than a weekend. My kids (and sometimes me too) have camped with the church my dad was pastoring for the past four or five years. He is no longer pastoring the church because he is retired, but the people really bonded with us and invited us back this year. I’m so glad we went, and I hope to join them in future years, but the whole time I was there I was dreaming that we could do similar trips with our own church family back home. Someday. We’re still growing. Right now we do a camp thing but it’s just one night and it’s held on one of the family’s properties. Also, my family has not yet been able to go. Conflicting schedules and all that.

Anyhoo. The camping trip for me consisted of a lot of relaxing on the porch of our cabin, crocheting and reading. The occasional walk around the campground to chat with people. I did not see much of my daughter because she was off riding her bike and playing with the other girls. One of the girls had brought about a dozen headbands with mermaid sequin cat ears, so they each wore a headband for the duration of camp. They dubbed themselves the “kitty cat club” and I can’t even tell you how that warms my heart. That all these young girls so quickly bonded. All of the mothers and grandmothers were touched to see their bond and we hope to keep them all in touch by good old fashioned snail mail. Perhaps they can remain friends throughout school, and make appearances at each other’s graduation parties. The last night of camp they all sat around and cried because they were sad that camp was ending and they wouldn’t see each other again for a very long time, if ever.

The first full day we were there we went for a canoe ride on the river. It was so wonderful and peaceful. Until the very end. Just at the end where everyone docks we hit a large rock or log and the current of the river yanked us over. Y’all, I was so freaking scared. I saw Natalie and her friend floating away towards the dock, and then I saw my AquaMic, my waterproof case for my cochlear implant, floating away. It had come off my head and life vest in the fall, and I was struggling to catch it before it was lost forever. It took a couple grabs but I was able to secure it and get back to shore. That’s when I saw my shoe floating away. Gah! Just a shoe, I know, but still. One of the older boys at the shore, or the gentleman who had been steering our canoe, I’m not sure, was able to get to where the shoe was and grab it for me. I did not want to have to walk around camp the rest of the weekend in flip flops. But really, I was mainly happy to be on dry land and could see that Natalie and her friend had made it safely to shore as well. When I walked over to her, she was almost in tears. She said she thought she was going to lose me. That’s when I realized that I must have put on quite a spectacle of fear when I was trying not to lose my precious cochlear implant. I felt really bad but she got over it pretty quickly once we went and got ice cream, so it was fine.

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Oh, I almost forgot about my phone. I was wearing my running belt to hold money for ice cream and my phone in a Ziploc bag. I took it out at the ice cream shop to check it and realized right away that it was not doing well. Those Ziploc bags are not airtight, I guess. Or I hadn’t closed it tight enough. I freaked out a ton because my phone is my connection to the world, as I’m sure it is for most people, but my nextdoor cabin neighbor had rice that I was able to leave the phone in for the remainder of camp. It didn’t fix it completely, as I still can’t use my “back” button unless I use the phone’s stylus, but it’s otherwise fine. Answers calls, sends texts, my books are all still there. It even charges normally. So it’s only minorly disabled. Kinda like me, you could say.

The day after that canoe event we had a tug of war between the guys and gals. The tricky thing is that they do tug of war in the river. It’s shallow at the shore but it’s quite rocky and the rocks are sharp and slippery. I tripped/slipped on a fairly large rock and bruised my shin pretty well, and then went on to assist the girls in winning a match. When they made us switch sides it was a different story because that’s where all the rocks were so it was almost impossible to gain a good footing. They tried to get me to join them the following day for a rematch but I told them no. That river and me were broke up and I had no interest in going back for more abuse.

I was pretty wrecked by Saturday afternoon, and kind of ready to go home. My legs weren’t moving right, I had bruises and pulled muscles all over the place, and I missed my shower. So I’m very happy to be home, but my body is telling me it’s still not recovered from all the activity, so I’ve dubbed this entire week a Week of Recovery. I’ll be resting as much as possible, with the hope that I’ll be back to working conditions by Monday.