Category Archives: Multiple Sclerosis

One day, one mile at a time

This week’s training was a struggle to fit in, but with some persistence I got it done! We have a lot going on here at the house (more on that later) so I wasn’t able to run exactly when I planned, but I did manage to fit all the miles in: 4, 5, 8, and then 12 for the long run. My 12 mile long run was a dream, really. The weather was perfect, starting out in the upper 60s and landing in the mid 70s with not much humidity. I had made some technical adjustments to my gear that made the run go a lot more smoothly. I’ll go over those technical details for the running enthusiasts, but for everyone else, feel free to skip to the end.

Hydration: I wear a hydration backpack on my longer, hotter runs, and I discovered last week that my hydration bladder was leaking. So, Amazon Prime to the rescue, and I had a replacement in time for the next long run. I recently started using a hydration product called Tailwind to mix in my hydration pack and I love how it keeps me from experiencing that “empty tank” feeling. My cousin, who is a seasoned distance runner, recommended it and I’m super happy he did because it’s been a lifesaver.

My deaf/blind vest: This vest has become a crucial component to my running gear. I get passed by so many bikers and runners on these trails and on the city sidewalks, and they always give me plenty of space. This is reassuring to know they are getting the message that I can’t necessarily see or hear them coming and can’t always get out of their way. Because without that vest, I look like every other runner out there, and simply shouting “on your left!” isn’t always going to work.

Feet: I’ve realized that my running shoes are too small. When you are running for these super long distances, your feet swell, so it’s usually recommended that you buy your running shoes a half size larger than your normal size. Which I knew, but regrettably ignored. Last year, when I was training for my half marathon, I developed a blister underneath the second toenail on my right foot. Which turned the nail black. It hasn’t been the same since, but it didn’t offer enough discomfort for me to do anything about it. Until now. These long runs especially have been aggravating it, causing a new blister to form, and I finally just cut the nail down as short as I could and managed to pop the blister. Yet it still wasn’t healing, so after some Google/Amazon research I landed on a silicone toe

cap to wear during my runs. I ran all 12 miles Saturday wearing that toe cap. The next morning I woke up to sweet relief! No pain or tenderness in that toe! It looks pretty gnarly and I won’t be showing my face at the nail salon for pedicures anytime soon, but I’m convinced that toe cap will protect it during all my running and allow it to heal properly.

Honest thoughts about the marathon training process: I don’t know if this is true of other first time marathon runners, but I’m really starting to get nervous about finishing this race in time for the cut off (because that’s really my only goal). The farthest distance I’ve run up to this point is 16 miles and that was at a snail’s pace, and still 10 miles short of the race distance. This week felt like a lot of miles and it’s not even at the peak of my training plan. I’m starting to get really tired and I’m thinking to myself “can I really do this?” As of the writing of this post, I don’t have an answer to that question. I really don’t know. But my husband believes I can. My family and friends all believe I can. So I’m borrowing some of their hope in me for the time being, until some of my own confidence is restored. One day, one mile at a time.

Romans 12:12 ESV “Rejoice in hope, be patient in tribulation, be constant in prayer.”

Epic run!

This past weekend my scheduled long run was 16 miles, just one more than the week before. I made the same plan as before, to run to the park and back, but this time I was more prepared. For one, I postponed the run by a day because thunderstorms were in the forecast. And two, I talked with my good friend who trained with me last year on these same trails, and she informed me that there was a way around the flooding under that bridge. If I dared, of course. The idea gave me great anxiety, but she was able to ride her bike out there and get a video of herself climbing up the side of the trail, still under the bridge, narrating the whole way. So I was able to see that it was possible, and that there was a well worn path made by other runners trying to get around the flooding issue (which apparently happens quite frequently).

It had stormed the night before this run, so I was not surprised to find the path flooded. I was not sure how I would do climbing up the side of this trail and under the bridge. I was really nervous. But I had already made sure my friend was available in case of emergency, and after the heartbreak of not making it to the park the week before, I really wanted to get to the other side. I felt I had never been more motivated to do a hard thing than at this moment.

I carefully made my way up the berm, climbing over rocks and stubble, keeping my center nice and low so as not to lose my balance. Stepping slowly in case of slippery spots. Once at the top of the berm, I had to take a photo because it was all still a little unbelievable.

It was a pretty incredible experience, and I think the grins in my selfies say it all. However, my adventure wasn’t over yet! I still had several miles to run in order to reach my halfway point. Fueled by pride, elation, and electrolytes, I made it to my previous week’s halfway point and kept on going for that extra half mile. I was on cloud nine.

Until mile 12. I still had gas in the tank, feeling strong as ever, but my left leg hamstrings were starting to send me some serious warning signals. “We need a break, and if you continue to run, we quit.” Fearing injury and knowing that would really slow down my marathon training, I opted for walking most of those last 5 miles. Occasionally I would try running again, just to see how the legs were doing, but each time that pain came right back and only went away when I went back to walking. So, reluctantly I finished my long run with brisk walking. I spent that time giving myself pep talks and reminding myself how much of an accomplishment all this is, even if I have to walk. I remembered all the people who are rooting for me back at “home”. I remembered when I needed a walker to get around. I thought of all the other people living with MS who can’t walk, much less run. And I decided by the time I got home that I would count this run as a Victory with a capital V. I conquered my fear of climbing that dusty berm under the highway. I ran all the way to my halfway point, and I got home safely, avoiding injury. I still have my doubts about running 26.2 in September, but I’m trusting the training and just taking it one day at a time.

I call this the Ugh Run

We are in the thick of it, folks. Marathon training. I knew it was going to be hard, but this run was certainly a test of my endurance, my persistence, my commitment to the goal. I had the perfect route planned, 7.5 miles to the park and back to make my scheduled 15. I was so excited to accomplish this! And yet, it wasn’t to be. As you can see from the photo below, I encountered some flooding, and there was no way around it. This was a bridge that goes under the highway, and I’ve since been told that it floods often, because it dips so low. It could have been possible to run through it, as I saw a man on a recumbent tricycle riding right through it, but that wasn’t something I was willing to do. So I took a sad face selfie and headed back the way I came. This roadblock was only 1.5 miles away from my half way point, which meant that I had to make up 3 miles of distance to achieve my 15. So I took all the loops I could. Ran around all the cul-de-sacs in my neighborhood. Willed myself to NOT go home before I reached that 15 miles.

This run was so much slower than all of my previous runs and I’ll be honest, I was hurting for much of the last third of it. I came home happy that I had finished, but doubting myself quite a bit. Why was this one so hard? I’m nowhere near ready for 26.2, can I really do this? What have I gotten myself into? But when I got home from that run, my dear husband encouraged me and told me I could do this. Not because he knows anything about running, but because he knows ME. And he knows that when I set out to reach a goal I don’t give up.

Next week my long run is 16 miles and I’m going to try to run that same route, hoping this time there is no flooding and I am able to reach my intended half way point. With every run and every day that passes, I am getting stronger and I am so excited to some day be able to say yes, I ran a marathon. With MS. I did a hard thing, and you can too. Maybe not necessarily THIS hard thing, but something hard for you. We all have challenges we face in life, and I hope by sharing my experiences with running I inspire you to face your challenges head on. Because we truly can do hard things, we just have to decide we can and go out and do it.

“Success is not final, failure is not fatal, it is the courage to continue that counts.” ~Winston Churchill

All the tens

My long run on Saturday was 10 miles, and it also happened to be July 10. Ever the math nerd, the tens make me smile. A nice even number if you ask me. I wish I could say I have 10 weeks of training left but I’m down to 9. Nine weeks! I don’t know if I’ll be ready, but whether I’m ready or not, I’m fully committed to finishing this race.

This has been an interesting journey so far, and I still have two grueling months to go. I’ve learned a lot so far about finding where my physical limits are. I’ve learned that those limits are not static. As I slowly increase my mileage, I find those limits get stretched out a little further. I still marvel at what my legs can do. I don’t get the drop foot that I used to, but my left leg is still much weaker than the right. I have to be careful not to trip, or to get over fatigued. My vision gets more foggy as the miles roll by, but since I’m never moving at lightning speed I just trust that I’m not going to run anyone over. And with the trails I’ve been running on, there aren’t really any obstacles for me to worry about.

I feel safe on these trails! Lots of walkers and bikers, but I stay to the right and there’s plenty of room.

One of the things that’s been a challenge is finding running routes in my area that are accessible to me. I live in a town that has trails all over the place. Trails that I’ve run before, with a friend, while training for my half marathon last year. When I committed to this marathon I knew I was going to have to utilize these trails or else I would just keep running in circles around my immediate neighborhood. That gets super boring, especially after the miles get up in the double digits. When we trained last year, my friend always picked me up to drive to these trails. Since I am unable to drive, I needed to find a way to get there on foot. And I am happy to say, especially after this 10 mile run, that I have found it! It took a couple tries, but when I run this route it feels familiar and safe. So my plan for next week’s 15 mile long run is to run it again but take it further. From looking at the Google map, I’ve confirmed that I can (fingers crossed!). But if I get on the trail and find it doesn’t go where I thought it did, I’ll just turn around, head home, and make up the rest of the miles by running around my street. And it will be just fine! See, I’m trying to learn to be flexible and resilient. It’s quite the process.

Also on Saturday, I was reminded by Amazon that it’s been a year since I had this running buddy tattooed onto my leg. He doesn’t have a name really, but I’m open to suggestions! This tortoise here is to remind me that even though I’m a slow runner, I am still a runner. And I never give up. I gave him the bib number of 38 because that’s how old I was when I ran my first official race. Okay, actually 38 is just a random joke number in our family, with a really long and stupid back story, and that’s why I picked it. But then a friend asked me if that’s how old I was when I started racing and I had to check. Turns out, it is! And I think that’s definitely more significant, and a pretty awesome coincidence.

In closing, I want to share another lesson I’m learning, and that’s to rest when my body tells me it needs it. Resting is important, folks. Last week I had to postpone a scheduled run and that was hard. I went to bed the night before fully intending to run the next morning but when I woke up the next day every muscle and joint in my body was screaming at me to stay home. So I did. I took the whole day to rest, to take it easy. When I woke up the following day I was ready for that 7 mile run. I didn’t struggle, I didn’t feel fatigued. I ran the whole way with a smile on my face. Well, not literally, of course. But it was there, nonetheless. Keep smiling, folks, even if it’s only on the inside 🙂

Long run in the rain

It’s been rainy this week, some storms, and I was forced to run on the treadmill yesterday. Six miles on the treadmill was misery. Seriously. The treadmill has some advantages, but mostly I hate it. It’s a last ditch effort to get the miles in.

So I was hoping and praying that the rain would let up enough for me to run my 12 mile long run outside. I had all my gear packed up the night before: safety vest, hydration backpack, waterproof cochlear implant cover, clothing, shoes, etc. I set my alarm and when I woke up it looked like there would be no storms and very little rain for the portion of the morning I had available to run. Hurray! But as I was getting ready I felt a growing trepidation. I would only have one ear to hear with, and not so well because the waterproof cover makes sound a little muddled. Also, the hydration pack and safety vest are not the most comfortable things to wear while running. However, function trumps comfort.

I set out on my run and urged myself forward, despite my legs telling me they wanted nothing to do with this trip. It always takes them a mile or two to get warmed up. After 2 miles though, I was feeling strong and just trying to keep my pace slow and steady, knowing I still had a long way to run. These marathon training long runs are not so much for speed as they are for training your body to be in motion for a solid length of time and distance.

Having been discouraged from the start, I was listening to my Kirk Franklin radio on Pandora to keep my head in a positive space. I kid you not, the first two songs that played were about rain and shelter from the storm. I hear you God, thank you for coming with me on this run.

Then, about 4 miles into my run, on the local trail I was passed by a familiar woman walking her dog. “Beth, is that you?” (Remember, I can’t see full faces) It was my pastor’s wife! She lives nearby so it wasn’t surprising to see her, just surprising that we were passing the same spot at the same time. We stopped and chatted for a few minutes and were on our merry way, but it turned out to be the heart warming boost I needed to finish the last 8 miles of my run! Because those last 8 miles – actually the last 4 in particular – were brutal. I could feel my muscles trying to seize up and my stomach was rumbling with hunger. I did a lot more walking than I would have liked, but I got it done. I finished what I set out to do. And next week I’ll get to do it all over again!

Running with MS

Well, I’ve been away awhile. I had some personal things that brought a hard pause to my blogging hobby, but it’s all been sorted out and I think I’m ready to return.

Why today, you ask? Well, I have some news to share that I think beautifully combines both running and MS, which seem to be the two topics most people like to read about here. Folks, earlier this year I decided to try to run a full marathon. I’ve been training for a couple months already, and this past week I decided to use this as an opportunity to raise funds for The National MS Society as well as solicit moral support. Because this is a colossal thing I’m shooting for. 26.2 miles is no joke for able bodied people, and here I am attempting it in spite of all the physical challenges that I live with on a daily basis, thanks to our good friend Multiple Sclerosis.

Those who know me on a personal level know I don’t often ask for help, and asking for donations doesn’t come easy for me. However, The National MS Society is an organization that has provided support to me throughout my MS journey in so many ways and I want to help give back.

So! You can visit my fundraising page by going HERE. I would be beyond grateful for your support, however you are able to give it. That could mean dollars, prayers, positive thoughts, likes, shares, or all of the above. It all means the world to me!

I also highly recommend visiting from my Facebook fundraising page. You can donate from either link but this is where I’ll be posting weekly updates throughout my training. Check it out!

Two Things

Two things I’ve been obsessing over this week: 1) I need to get back in the habit of running on a more consistent basis and 2) I want to try to get more writing done with my memoir.

The first one is easy, really. It’s just a matter of reminding myself that if I can just lace up those shoes and get out there, my fatigue will be kept at bay. It’s amazing how effective the regular running is at combating the MS fatigue I normally experience. It’s been the best weapon for fatigue, for sure. I’ve tried lots of things in the past but running has been the best. The tricky thing is, it only works if I actually do it. So my goal this week is to get back to it. I talked to my son about running, because he was saying he wants to start running to train for cross country in the fall (crossing our fingers they still let the kids run, geesh). So we agreed we were both going to go running every afternoon, and once he feels stronger – i.e. recovered from playing video games all day, every day – then he’ll probably go off and run on his own. He’s much faster than I’ll ever be but I’m so glad he slows down to run with me. He’s a lot of fun to run with because he does all the talking while I huff and puff alongside him.

That second thing I’m obsessing about is the memoir. This is much tougher, because I really have no clue what I’m doing writing a book. I am finding that I’m at the point of needing to organize what I’ve written so far, and I’m stuck. I’ve always been one who has to see to understand, so not having the ability to really get a clear visual of the outline of the book has me needing to brainstorm in order to get unstuck. I printed what I have so far, and this coming week I’m hoping to look at it under the crafting light and maybe take notes with a Sharpie, so I can see what I’m writing. I would really love to write this book by hand, but not being able to see what you’re writing poses a special kind of challenge. So. I’m not giving up with this, but I am having to be creative and think outside the box. If any of you are outside-the-box thinkers and have any suggestions for me, I’m all ears!

Seeing the whole picture

I had a good weekend. I can’t say it was much different than most other weekends, but after last weekend it was just nice to have some positive moments. Last weekend I was faced with a pretty frustrating situation. I had been informed on Good Friday that my long term disability insurance claim (the one they’ve been paying me on for 6+ years without issue) was being terminated. The letter of explanation detailed my level of activity with running and Bible study and so forth (based largely on what they read here in my blog) and my 20/20 vision that was noted in a recent visit to the low vision specialist.

Now, most people probably assume that 20/20 vision means perfect vision, but that’s not the case. I have a visual field defect, and that means I only see a portion of what others see. Of that portion that I can see, I see clearly, i.e. 20/20. So, to say someone has 20/20 vision does not always mean they are seeing the whole picture. And while I love to think about how this concept can be applied to life in so many abstract ways, my brain isn’t ready to go down that rabbit hole today. So maybe another day. Or maybe not.

All that to say, this letter of determination from the insurance company completely left out the details of my visual field defect. Of course, I’m appealing the decision and I have an attorney working for me to file the appeal. I’m really hoping and praying that God is in my corner on this one and that I’ll be able to restore my long term disability income. But if I’m being honest, I was livid when I initially received the news. Trembling, fuming, crying in the shower livid. However, I’ve had lots of time to pray about this and to hash out all my feelings with a few friends and family members, and I’m doing much better now. I’m still holding onto a little bit of bitterness, but I’m working hard to let that go. Last night I had written an entirely different blog post and I felt God nudging me away from the Publish button and towards reading James chapter 3. I’m so glad I responded to the nudging because James chapter 3 was all about taming the tongue. It was definitely a message meant for me. I love how God speaks to us so clearly, when we take the time to listen.

In other news – I haven’t been running much but I’m trying to get my stamina back up because I need to run a virtual 5k this week. I’ve never done a virtual race before but I signed up for this months ago and this is the week we are “supposed” to be running. I went for an almost 3 mile run yesterday, and only had to walk for a short portion at the end. In the first mile though, I nearly fell. I always wish I had these moments on video, because in my mind they are quite comical. I was running alongside the curb, on the street because there are fewer cracks to avoid, and at a whopping 13 minute mile pace, I ran directly into a fallen tree branch. I whispered profanities as I scrambled not-so-gracefully forward in order to escape the clutches of the evil tree branch. (If I don’t have a video, the least I can do is describe it Dramatically lol) I did not fall, thankfully, but I’m sure the van that was passing as I struggled to free myself got a kick out of the sight. I sustained only one tiny injury, a scrape on my shin, and am ready to get back out again as soon as the temperatures climb back up above 40 degrees.

This past week I’ve had a lot of great interactions with family members I don’t talk to nearly often enough, and that has been refreshing. Phone calls to and from my big brother and my oldest younger sister. A refreshing Zoom call with my cousins here in Michigan and down in Georgia. And grilling out with my husband and kids. All in all it was a great week. This coming week is when the online learning officially starts for the kids, so we’ll see how that goes. I’m winding down with BSF and FPU so those will be out of the way very soon. I’m looking forward to warmer days and praying that God would heal this world quickly, and sustain us in the meantime. Be well, my friends, be well.

Infusion day

I’ve been a little nervous about this upcoming infusion, as so much has changed from 4 weeks ago. We are now under a shelter in place order to stop the spread of the coronavirus. Essential workers and activities are still allowed, but people everywhere are taking all the advised precautions. I’m wearing a hand-sewn paisley face mask a dear friend dropped off for me last week, as well as a pair of latex gloves.

My pretty paisley mask

My husband dropped me off, and we tossed virtual kisses at each other as I got out of the truck. I walked into the cancer center, where my infusion center is held on the 2nd floor. In the entrance area, between two sets of automatic double doors, a man is sitting on a bench, wearing a face mask. I walk through the interior double doors and I’m summoned to a Purell stand and asked to sanitize the latex gloves I’m wearing. The woman at the station then asks where I’m headed. When I tell her the infusion center, she informs me that they have their own procedures and will ask me the necessary questions and check my temperature. I’m wondering if she can read my timid hesitation and confusion through my half-covered face.

I took the elevator this time, to get to the second floor. I usually take the stairs, but I still have poor balance and wanted to avoid needing to touch the handrail, even though I was wearing gloves.

On the second floor there are two women blocking the check in area. They are standing at makeshift stations, tall, round tables holding boxes of face masks. Each table is proceeded by a line of red tape on the carpet several feet away. This is where I’m asked politely to stand. Everyone is wearing a white face mask. I wait patiently for my turn.

When it’s my turn I’m instructed to remove the mask I’m wearing and put on the mask they have provided. They said I could wear my mask over the white mask if I wanted, but I declined and put it in my purse. I’ll save it for another day. I’m asked a series of questions and my temperature is taken, and the woman signs the form for me. So I don’t have to touch anything.

Once I’m cleared they tell me to stand at a red paper square on the floor, several feet ahead. I walk over and wait to be called but it’s tricky because the masks muffle all the sound and I can’t read lips that are covered, obviously. I forget how much lipreading plays a part in my speech comprehension.

A woman far ahead looks in my direction and points at me, because it seemed clear to her I wasn’t getting the message to come over to her desk. She checks me in, quickly, puts an ID bracelet on my wrist, and then I’m sent over to the waiting area. I find a seat away from other patients, breathe deeply, and wait.

When my intake nurse comes through the doors ahead, she sees me immediately and I can tell from her eyes that she’s smiling. As we walk back to my corner station, she mentions that it’s probably hard for me with all these masks on. She remembers me well; I’m a regular at this place. I say yes, that I forget how much I use lipreading until it’s not available anymore. It’s not impossible to understand, just a little more challenging than normal. Nothing I can’t deal with.

To be perfectly honest, the rest of the infusion went just as usual. It was a bit strange to see everyone walking around with face masks on, but I didn’t feel a heightened sense of dread or anything. It felt like business as usual for everyone. For all the nurses and staff, this has become their new normal (for now, at least) and they are well adjusted to it. Once I was sitting in my infusion chair, I felt completely at ease and had no reason to be fearful. And once I had my mask on properly, it was actually quite comfortable to wear. To quote the Dread Pirate Roberts, “I think everyone will be wearing them in the future.”

Dinnertime

I’ve always been a planner, and for the last several years I have established a routine of planning our meals on a weekly basis. I know meal planning is not for everyone, but it just makes things easier and way less stressful for me. With that last grocery trip, we are set for at least two weeks of meals. And since all the events have been cancelled, I now have something to fill out my fridge calendar:

But that’s not all the fun I’ve been having! Thursday I had a video visit with my new cochlear surgeon. We needed to meet so they could “establish care” which I guess just makes things easier when working with the manufacturer of my implants, especially when it’s time to upgrade to the newer model.

This coming week I have my regular Tysabri infusion. For the first time in years, I’m nervous about going to this. My last infusion was just days before everything shut down, but now we are in full blown shelter in place status and I am worried that I might pick up the virus and bring it home to my family. But my husband and I both agree (as does my neurologist) that the risk of another MS relapse is a far greater risk, and so I must get this infusion. The last time I missed a dose, I lost 60% of my vision, permanently. So I’m going, but I am going to be as safe as possible. Rather than riding the Spec-tran, I’ll be dropped off by my husband. I’ll be wearing an N95 mask (he had a few in the garage that his dad reminded him he’d given him awhile ago) and rubber gloves. I told hubby I thought I would look like some kind of freak walking into the infusion center and he said probably not, because everyone else there will be dressed the same. I don’t think the nurses are going to give me any grief over being too careful. So I’m sure it will be fine, but if you wanna mark your calendars to pray for me Wednesday, I’m sure it wouldn’t hurt.

I’ve really been enjoying our family dinners lately. We’ve always eaten together as a family, nearly every night, but family dinnertime feels different now. Our schedules are clear, so we are far less rushed. Nobody has anywhere they need to be. A couple nights ago we were all sitting around the table and legitimately enjoying each other’s company. We were talking about what we planned to do, where we planned to go after all this is over. My daughter brought up some great memories of a trip I took her and her brother on, to visit downtown Lansing. Together, we reminisced about all the places we visited that day and what fun we had. Then she said we should go again. Sigh. I love that girl. She’s a city girl, just like her momma.

I worry sometimes about my daughter because she’s extremely introverted, and she’s spent almost every waking hour of this quarantine holed up in her room, playing Roblox. But then she comes out and chats up a storm, telling me all about the fun she’s having. The other night we watched Dr. Strange together, at her request, and after the movie was over we discussed our favorite parts of the movie.

So, I feel like I’m bonding with each of my kids, in entirely different ways. It’s been really nice. This quarantine stuff certainly stinks, and it sure wasn’t what any of us would have planned for our lives, but I’m thanking God for the opportunities it’s giving us. Every storm cloud has a silver lining, and I hope that you are finding your silver lining amidst this storm.