Category Archives: Multiple Sclerosis

Madam Sleepsalot

If you’re ever curious about my day to day routine, today is your lucky day. Now that kids are back in school and snow days are hopefully well behind us, I’ve settled into a daily routine. This time around I sort of just go with how my body is feeling, and it’s interesting to me how well this is working.

Every morning I get up at 5:30 with my son, and stay up until 8 when my daughter leaves for the bus stop (her school starts an hour later than his). While the kids are getting ready for school, I’m drinking coffee, reading my Bible, and sometimes eating breakfast (If my stomach is up for it). After the kids are off to school I go back to bed. I don’t set an alarm, I just sleep as long as my body needs to. Some days that’s only an hour or two, some days it’s more. Thursdays I generally sleep much longer because I’m recovering from a full day on Wednesdays, between Bible study in the morning and Financial Peace University at night.

After the morning nap I get up, eat a late breakfast or lunch, and then I get going with that day’s work. This usually includes dishes and laundry, and sometimes paying the bills and running. I’m usually done by 3:00, just before my son gets home from school, and then I can relax with a book or a tv show. Then I start thinking about what to make for dinner. The rest of the evening changes from day to day but in general I’m letting myself relax and enjoy time with family. I’m not stressing about my to do list because I’ve already done the day’s work. The rest can wait until tomorrow.

So you could say I work about 4 hours a day and sleep 10. This seems excessive to me, and the old me would think I was lazy. The new me is learning to understand this is just part of my disability and it’s what my body needs in order to heal and stay healthy.

It’s been really refreshing to be able to establish a routine that allows for a good work/rest balance. I’m getting things done, but I’m working WITH my fluctuating energy levels rather than fighting against them (or giving up altogether, as I have done in the past).

Much of this new attitude has resulted from consistent reminders of the grace God gives us. When I read in Scripture that He tells us to rest and to stop striving, or even to “strive to rest”, I am encouraged to know I’m doing the right thing. Amen? Amen.

Advertisements

Hack hack, ahem ahem, cough cough

You guys. I’ve been sick for all of two and a half days and I’m trying sooo hard not to be a baby about it, but geesh. I don’t get sick very often, but when I do, I just want to snuggle up in a cozy blanket and let people wait on me. The first part works alright but the second one, not so much. Because folks, I’m the mom. And mom doesn’t take sick days. Which is only kind of true. My family is really great about helping out and giving me my space. No one’s even complained that the laundry is piling up while I’m downstairs nursing myself back to health.  It’ll get done, eventually.

Anyhoo. Since I’ve been out of commission all I can do is sit around thinking about how little I’ve blogged lately. Not cuz my life is boring (though it is a little) but because I just haven’t been in the mood for blogging. It happens every now and then. Whatevs.

What’s going on lately, you ask? Well, the son has been busy wrestling, both for the local club and the middle school. This is exciting stuff folks. Now that he’s on the middle school team he practices every day right after school. He does not seem to be tired out by this, thankfully, and it’s been a huge load off for our resident chauffeur, my hubby. Now he doesn’t have to drop him off, then go back and pick him up. Just one trip per day, and he’s home by dinnertime. Which means we all get to eat as a family again. Every day!

The daughter is not in sports. Has no interest really, at least for now. That could change down the road but I don’t think that’s likely. Her two loves right now are art and animals. Since it’s -38 degrees outside these days, she did not want to go for more horseback riding lessons, so we found her an outlet for her art. A gentleman from our church is willing to give her weekly lessons and teach her whatever she wants to know. Right now she’s on a big Bob Ross nature scene kick, and it’s friggin’ amazing what she is able to create just after watching a few YouTube videos. I know I’m a tad biased because I’m her mother, but there’s no denying that she has some serious talent that will only get better with more training and practice.

It’s kind of weird but I’ve had zero motivation to write that book I had been talking about. I still want to tell my stories, just maybe not in that format. Maybe we’ll just keep them here on the blog for now. I could do some kind of kooky flashback series where I tell short stories about what happened to me five years ago. Or maybe I’ll get the hankering again to write the book. Who knows?

I’m just really happy doing the things I’m doing now that I don’t really feel like going back to that time. It feels too heavy. Right now good things are happening. My kids are growing and changing, and I’m able to be a part of that. I’m slowing down and trying to be more focused on the most important things. Spending time with God, family, friends. It’s been a good change.

And speaking of slow, I set myself a new goal: to run a half marathon in the fall (it’s speaking of slow cuz I’m a slow runner, get it?). I have a race picked out and a friend to run it with me. I have a training plan picked out on my Runkeeper app, and it doesn’t start until March 5th. So I have time to warm up to running regularly again. I’ve not been running since before the holidays so my legs are a little rusty.

I even spoke to my neurologist about how to train safely, and was reassured that this was not too big a goal for someone with MS. If I take it slow and am careful, it’s totally possible. In fact, she said regular exercise is just as crucial to my health as is my disease-modifying therapy. So as far as priorities, I need to bump it way back up to the top. She said that running will not cause me to relapse, but will only help to keep me from relapsing. When I run, certain symptoms flare up, like foot drop and difficulty seeing, but she said that’s because those are nerves that are already damaged. As long as I’m being safe about it, I should be fine. Which is why I always run these races with friends who can be a good set of eyes and ears for me and keep me safe. So that’s on the docket. 13.1 miles. In a row!

And that folks, is all I have for an update right now. I had a funny thought earlier and I was going to post it, but now I can’t remember it. So I apologize for my foggy memory keeping me from leaving you on a humorous note. Oh wait! I can leave you with a pun… this one I choose because we bought new winter gloves for my son today…

“I got a new pair of gloves today, but they’re both ‘lefts’ which, on the one hand, is great, but on the other, it’s just not right.”

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.

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.