Category Archives: Multiple Sclerosis

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!

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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.

 

2018 Squirt Gun 5k Fun Run

I ran a 5k last night with my friend and neighbor, Theresa. We had talked awhile ago about running a Color Run together, but it didn’t look like they had one coming back to our town. So I found us another fun run, on what I thought would be an easy course. It was set on a local high school’s cross country course, so I suppose I should have known. It was fine, really, just an added challenge. Everyone got their own squirt gun, and there were stations along the course where you could fill up, or get shot at, or both. I was all about squirting the little kids at first, but after the first half mile or so I just wanted to focus on running.

This was a different run for me because it wasn’t on pavement, and I wasn’t wearing my cochlear implants (they aren’t waterproof). So running deaf and on uneven terrain (that I couldn’t always see) proved to be quite the challenge. However, it was great having Theresa running right next to me, to alert me to upcoming obstacles and steer me in the right direction. Towards the end, as my legs were growing rather tired and we were making our way through the woods, I tripped on a fairly large root (or something) and Theresa caught me just before my face hit the ground. It was a very impressive catch! It was kind of scary for me though, not because of the falling, but because of the way my right leg responded to the falling. In the past I’ve been able to catch my balance, but this time my right leg – my “good” leg – completely gave out on me. Theresa had to lift me up to standing and then help me move my right leg to a stable standing position, and then after a minute or so I felt ready enough to get back into the motion of running. Of course I was still unsure of my footing and really not trusting either one of my legs, so Theresa kept a good hold on me as we continued the race.

I’m still sort of replaying the whole experience in my head in slow motion. I have been working really hard to be able to run this 10k in October and I don’t want this experience to keep me from that. I want to use this as a learning experience and maybe a reminder of how important it is to get my legs as strong as possible. I can’t know for sure if this body will allow me to run 6.2 miles in a row but I’m gonna keep pushing the boundaries and let it tell me when it can’t go any further.

Sidenote: On the way home, Theresa suggested stopping for a beer, so we ended the night with a cold glass of Guinness each! I think I’ve found another kindred spirit 🙂

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.