Category Archives: Multiple Sclerosis

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?

Official Break-up

My brain is finally letting me sit and truly relax a bit so I have a hot cup of coffee next to me, my laptop, and my cozy blankets. Yes – blankets – plural. Because snuggling up in a recliner with a couple cozy afghans is one of my favorite things about the fall season.

I learned this past week that dairy and I can no longer be friends. I learned it pretty quickly with bacon, and I accepted it graciously and moved on. But dairy has been a little harder. I gave up eating meat and eggs and dairy, all at different times over the years. Over time I have reintroduced things here and there, paying close attention to how my body responds to each food. Eggs seem to be totally fine, which makes me happy because eggs are great. Some meat, as long as I don’t overdo it with quantity, is fine. Almost no effects at all. Bacon, however, wrecks me. Stabbing, crippling pain and a headache that won’t quit. Legit wrecks me and leaves me useless for almost a day. So I don’t even mess around with bacon, and I’m okay with that.

Dairy, however, was the hardest for me to give up, and I admit I’ve been flirting with it a lot the past several months. I’ll snack on some cheese here and there, but nothing serious. Then Thanksgiving came, and with it lots of leftovers from the day’s meal, including a carton of half and half, my formerly favorite coffee additive. Sooo for the last five days I’ve been indulging in coffee with half and half in it. This morning as I rolled out of bed and padded down the stairs to make my morning coffee, it occurred to me that something had changed. I have slowly been sliding back into a state of fatigue. I’m having a harder time waking up, and my legs are heavy. It’s as if my body just doesn’t want to move. Also, my face has been breaking out more than usual, even with my new rosacea treatments. I kid you not, I have a zit right now IN MY EAR LOBE.

I’m blaming all of this on the half and half. And maybe the whipped cream and pumpkin pie. Because nothing else has changed, that I can think of. I’ve been without the debilitating fatigue of M.S. for a blissful long time now, coincidentally ever since I stopped consuming dairy. For it to show up like this so quickly, I believe, is no coincidence. So, I’m dumping out the half and half. It pains me to feel like I’m wasting it, but the alternative is to drink it and keep getting sicker. I think “wasting” it might be the wise decision here.

So you could call this my official break up with dairy. No more of this on-again off-again business. We’re done. I’ll remember fondly all the late night ice cream binges and the burritos covered in melted cheese. We had some good times, but it’s time to part ways. To commemorate this day, I leave you with this haiku:

Dairy, we had fun
Now you make me sick and tired
I must say goodbye

Time Management

All the things. It’s just a challenge managing all the things. I’m sure I’ll get the hang of it, but I’m gonna have to pray real hard about taking on this much again.

I had a long phone call last week with my disability insurance company to review my status. They just like to make sure I’m still unable to work. It’s always fun rehashing the details. She asked how driving was, which is funny, because it was 20 minutes into our conversation and I had already explained to her how bad my vision is. I need my family to read labels for me, I don’t think driving a car would be a wise idea. What stuck out to me about the phone call was at the very end when she asked me the primary reason I wasn’t able to work a full time job, and I answered without even really having to think about it: “because it would take me a week to accomplish what I used to be able to do in a day.” That statement essentially rang in my ears for the next few days. This is why I need to be patient with myself. Everyone around me is so gracious, yet I’m the last one to catch on.

So these responsibilities I’ve taken on over this past year, along with my normal household and mothering duties, are totally doable. One. Step. At. A. Time. I’m just going to keep at it and see how it goes. If I find that the important things are getting missed or done too late, then I know it’s too much and I need to scale back or reach out for help. But so far it seems like it’s been working well. I’m learning how to delegate as well as take breaks. It feels like a whole new way of looking at time management. New to me, at least.

I’m very much looking forward to Thanksgiving this year. We’ve always hosted, so there’s nothing new there, but this year my son and I signed up to run the Turkey Trot 5k in our city the morning of Thanksgiving. I saw that a neighbor of mine was attending, so I asked if we could tag along. I’m really looking forward to it, because this is an experience my son and I can share, even if he runs twice as fast as I do. Thanksgiving mornings are pretty low key for us anyway, because most of the prep work is done the day before. All we do is put the turkey in the oven and then wait for the family to arrive with the rest of the food.

I stopped taking the antibiotic for my rosacea and am using a medicated cleanser and cream instead. I got the cleanser late, because we were having trouble with the pharmacy, but I’ve had it for a few days now and I can tell already that it’s clearing up my skin. It’s made with sulfur so it smells not so awesome but I don’t mind. If it works, it’s worth it. I’m just happy to be off medication. The only pills I take now are vitamins and supplements, and that means it’s not the end of the world when I forget to take them. Which happens often. I’m trying to get a morning routing set with my powdered greens and my coffee, and hopefully now my vitamins too.

I’ve been reading a lot of good books lately. Most of the books I read are digital library books that I only get for a set amount of time, and I often forget to read them until they give me a 3 day warning that they are about to expire, so I have a collection of books I just didn’t finish in time. Which is why if you look at my Goodreads list, it looks like I’m reading like it’s my J.O.B., but really I’m only reading one at a time. Right now I’m reading (actually listening, cuz it’s an audio book) The Shallows, by Nicholas Carr and I’m only on chapter three but already it’s a little frightening. It’s about what the internet is doing to our brains, how it affects the way we think and process information. Very interesting so far.

I expect this weekend to be pretty chill so maybe I’ll take some time and work on writing my memoir. I was getting overwhelmed with the idea but stepping away from it seems to have helped, and I am more confident in my next steps. I’m going to focus less on the details of what happened for awhile and more on the ultimate message I want to thread through the book. Or maybe I’ll just re-read what I’ve written and fill in whatever comes to mind. Whatever I do, I understand now that writing a memoir can be a long and tedious process and the worst thing I can do is rush the process.

Tomorrow is our leader’s meeting for Bible Study Fellowship so I need to head off for now and start winding down. I hope you all survived your Monday and enjoy the rest of your week!

Abbey trip reflections

So, folks. I’ve gotta get this nagging voice out of my head, so I’m just gonna spill it. I said I would talk about what I heard at the Abbey almost two weeks ago, so here goes nothin’.

The biggest revelation, the biggest message I heard God speaking to me was that I need to keep sharing my stories, and with that I need to get back to writing my memoir.

We were sitting in the chapel, following along with the Psalms the monks were chanting, and they came to Psalm 40, which I recognized to be the one given to me when I lost my hearing. Given to me, as in, I heard the song “Jesus, Lover Of My Soul” one time in a movie many years prior, and then it was all I could hear in my head when I could very literally hear nothing else. That song, that Psalm, became my mantra for over a year. The words “taken me from the miry clay” resonated with me on so many levels.

Reading the Psalm in church got my attention, but that’s not the part that spoke the loudest to me. What spoke to me most was when I went back to the cottage and read the Psalm for myself. Verse 3 in particular, and I immediately felt God saying that I needed to continue writing – “singing my song” – so that people will see Him and put their trust in Him.

He put a new song in my mouth,
    a song of praise to our God.
Many will see and fear,
    and put their trust in the Lord.

What my sister helped me see was that writing my memoir is much like training for and running a long race. It takes time, it might not look pretty, but the most important thing is that you keep working towards the goal. The key is consistency. So even if it’s just a half paragraph a day, or even every other day, it’s okay. I just need to be committed to not quitting. I will get this memoir written. It’s going to take a lot of patience, and you can bet I’ll need a lot of help, but dang it I’ll have it done eventually.

I have over 7000 words written at this point, and I’m kind of stuck as to where to go next, but I’ll keep chipping away at it. I’ve told a lot of small stories to make up those 7000 words but there is still a surprising amount of detail left to tell in order to make it a complete story. Some of those are details I don’t possess, memories that aren’t mine to tell because I was either sleeping or only somewhat conscious, but that’s where I’ll need to utilize my new “asking for help” skills.

It’s quite intimidating, the idea of writing a book. I have author friends and family so I know it’s possible. Normal human beings do it all the time. I just worry that it’s not possible for me, because I have cognitive struggles from the M.S. But that’s the primary thought that’s kept me from working on the book, so I need to stop thinking it.

Cognitive struggles due to M.S. Big Fat Sigh. This is probably one of the most difficult parts of the disease for me to accept. I was always the smart girl, the know-it-all, the straight A student. “That Mindy, she’s so smart”. I never had to struggle to understand things. That 4.0, smart girl persona? I let that define me, and now that that part of me is being chipped away, it seems my self-worth is being chipped away right along with it. This is painful to write about, but maybe it needs to be said, because as I’m writing this I am getting rather emotional. And in my experience, that lump in my throat is usually the first step towards healing a deep wound I have been ignoring for far too long. I need to swallow that lump, along with my pride.

I struggle daily with forgetting things. I know people say this is typical of aging, but I know it’s more than that. I also struggle with comprehending simple concepts, whether they are new to me or not. I struggle with holding conversations and putting ideas together. I struggle hard with writing, and this is the most heartbreaking. I have always loved writing. I have kept a diary since I was a little girl. I started blogging back when you had to write your own code. I journal thoughts in my head throughout the day, and sometimes those thoughts actually make it to my written journal. Just today, my laundry folding was interrupted by this blog post forming itself in my head, itching to get out.

Writing is part of who I am, so when I set such an ambitious goal as writing a memoir, having never written a real book before, you can imagine it’s frustrating to feel like you are unable to make any progress. When your brain just refuses to make the necessary connections, it’s very discouraging.

But! I read a meme recently that reminded me that when God calls us to something, he factors in our failures and frailty. So I’m taking that as truth and leaning on Him, always and forever.

Cautiously optimistic

https://multiplesclerosis.net/living-with-ms/differences-after-ten-year-mark/?utm_source=facebook.com&utm_medium=promoted&utm_campaign=Aubagio-CAS&utm_confid=soviec04u

This article came through on my Facebook feed yesterday and I found it interesting because this week marks 10 years since my MS diagnosis. I may be off a little on the date but I’m almost certain it was early October. It was a month or so before my daughter was born, which was 11/05/09. So, close enough.

Anyway, I find it helpful sometimes to reflect on how my mindset has changed, whether it’s better or worse, or both. Most of the time these days, it’s better.

Ten years ago I saw myself certainly being wheelchair bound by now, or at least very heavily reliant on my walker. But instead I find myself fully mobile. I have stored away a walker and 3 canes that are for sure covered in dust by now. My husband and I have talked about getting rid of them altogether, because it’s been so long since I’ve needed them. I am not quite sure I’m ready to take that step.

See, if I’m being completely honest, that suggestion frightens me. Yes, I’m doing well and I’m running races, but the nerve damage is still there, and this article reminds me of that sobering fact. I can run all I want, eat all the vegetables my heart desires, but I can’t heal the scarring that has been done to my nervous system. Only God can do that.

I want to live courageously, without fear of the future, because it’s so much better than living in fear, which is where I was 10 years ago. Heck, even 6 year ago I was there, stuck in fear mode. My body and brain were shutting down on me as a coping mechanism. But that is no way to live, and I am fairly confident those days are behind me.

As I’m sitting here writing I’m gaining courage to let go, so pictured below I present to you my canes. From left to right: The gray cane is folded for easy transport, The 2nd cane was actually my first cane following diagnosis and has ladybug stickers on it that I applied myself (Bug was my nickname through high school and many years beyond), and the last cane is covered in a paisley pattern, because I love paisley. The walker is buried in the basement and not worth retrieving for this photo, but I’ll tell you I put flame auto decals on it and named it Speedy. So you know it’s cool.

I don’t know about getting rid of the walking aids. There is still a quiet voice back there whispering “what if?” and they do hold memories for me. However, they are not very joyful memories, so Marie Kondo would encourage me to let them go. Maybe I’ll just keep the paisley cane, because it’s just so pretty. It does spark a teensy bit of joy. 😁

No, I’m still undecided. I’m going to go for a quick run and see if I can make up my mind!

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.”

2019 Capital City River Run

Welp, I did it! I ran a half marathon. All 13.1 miles with minimal walking. All of this training I’ve been doing really paid off, and I was able to run pretty much the entire way. I walked over slippery bridges and once late in the race because I was sensing some drop foot, but other than that I was good to go. I did NOT feel like I was dying, and despite how I looked to others at the finish line, I felt fabulous. I was all smiles and ready to sign up for the next one.

The Comradery: I simply could not have done this race without my friends. Alicia and Staci were with me every step of the way, guiding me away from obstacles and leading me down hills so I wouldn’t lose my balance. They even kept me from taking off in the beginning at too fast a pace, which is something I tend to do, and pay dearly for on these long runs. I happened to see a couple other running friends before the race started, and that really helped to boost my adrenaline. All the runners I have gotten to know are pretty special people. We are a diverse crowd, and yet everyone is so supportive of on another, regardless of all our differences. We are all running with the same goal, but for very different reasons, and I find that pretty awesome.

The Spectators: I had an entire team of spectators cheering me on throughout this race, and this was pretty dang awesome. My husband, my son and daughter (who had no shortage of hugs), my dad and stepmom, my sister and her boyfriend, my niece, and as a last surprise of the morning, my big brother. I was so surprised to see him there because he has been so busy working lately I just didn’t expect he would be able to make it. But he was there. They were all there, and they knew why this was such a big deal. It wasn’t just a race. This race happened almost exactly 6 years from when I lost my hearing and vision. In fact, that morning a memory came up on my husband’s Facebook feed. It was a posting he had sent out updating everyone on my long hospital stay. I was so sick and no one knew what was wrong with me, and I could not walk unassisted, among other numerous issues. So to have that come up on his feed the day I was running my first half marathon was just incredibly fitting.

The Final 5k: At 10 miles my family was there cheering us on, as they had in several other spots, and my son started jogging next to me. The excitement of the moment took over, and I invited him to run the final 3.1 miles with us. They frown on this sort of thing, I guess, but no one bothered us about it. He did a great job keeping me going and holding me steady down the hills. However, when we were nearing the finish, we were at the top of a very steep concrete ramp that feeds into the baseball stadium where the finish line was. He danced on ahead of me while Alicia and Staci took my arms to help me down. I was so embarrassed to see my husband at the bottom of the ramp, taking our picture. It looked rather pathetic, as if my legs had stopped working, but really it was just a matter of keeping my balance down the incline. When we reached flat land my son was waiting for me and we began to sprint the last stretch towards the Finish. I was so giddy I was almost in tears. And after I crossed the line I tried to stop but instead just fell to the ground. This is what seems to happen after my races and it alarms people because it looks like I’m hurt but really it’s just muscle weakness and poor balance. The motion of running keeps me on my feet somehow, so when I try to walk it never works. They brought me a chair and a woman put a medal around my neck and we all just stayed there congratulating each other and taking pictures.

It was a fantastic race and I am so glad I did it. Every time I try a longer distance I think about how far I’ve come, and I wonder how far I can go. My curiosity I think is what drives me. I just want to see how far I can go before my body says no. Yes, it tries to tell me no some days, but I’ll always try to call it’s bluff.

I am so grateful to everyone for supporting me and cheering me on. I could not have done this without you. Most of all though, I owe my gratitude to Jesus Christ. I would not have even started on this journey into running and health if it had not been for His sustaining grace and comfort. He is my constant, every day all day running partner. Hallelujah!

The Finish Line: