All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
Health, Multiple Sclerosis

Training for health

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Today was my first attempt at running outside. No treadmill. I tried to have zero expectations. I really tried. But when my foot drop showed up 1/3 of a mile in to the run and I started to feel extreme disappointment, I realized I did have some expectation after all.

I guess I expected it to be more like running on the treadmill. It was nothing like it. Entirely different, in fact. I was surprised. And a lot disappointed. I did not expect the foot drop to show up so soon. And let me tell you, I had felt really ridiculous and self-conscious from the very beginning, so the foot drop didn’t help. I felt like a three-legged duck.

So the foot drop was there, looming, threatening to put me flat on my face. I tripped on my toes a few times, but continued running anyway. Because I gotta get home somehow, right? And this run was really just a test to see what pace I run when I don’t have the treadmill telling me how fast I’m going. There was one trip about halfway through the run that almost took me down, but I caught myself and immediately decided to walk for a bit to allow me to rest my legs (and sooth my ego). Then I started running again. Slowly, and with small steps, SLOOOOOW-motion for sure, but I was moving! And not falling. My biggest fear is falling.

You know what though? Falling is not failing. If I fall, I can’t take the blame for it. My body chooses to do things without my permission. But I can choose to focus on what is within my control. I can keep moving. The more I move, the more I stay at it, the stronger my legs will be, the stronger my core muscles (needed for balance!) will be, and it will get better. I know this is true because I am doing more than I ever thought was possible even a year ago. I am pushing my body slowly, one day at a time, to go a little bit farther. This is one big test, to see what this body is capable of. And I am thanking the Lord that it’s not disappointing me.

I have a 5k race in less than 2 weeks. I have revised my goal slightly after today’s run outside. It was initially to finish in less than 40 minutes. I’m not sure if I can do that in two weeks, so my goal now is simply to finish. Period. Run, walk, crawl, whatever it takes. I will finish this race. And then I will continue on. I will keep running. I will keep pushing. This is not just a 5k I’m training for. I am training for my health.

Cochlear implant, Daily Snippets, Multiple Sclerosis, Piper, Visually Impaired

Little-big victories

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I went for my six-month follow-up with my neuro-ophthalmologist today (that was a lot of hyphenating lol). After reviewing the results of my Humphrey visual field test (flunked with flying colors, you could say), the standard “look straight into this bright light while I breathe loudly near your face” test, and chatting with me for a few minutes, he was ecstatic. Like, over the moon happy to see how well I was doing. He said my right eye had definitely improved. A small improvement, but it’s an improvement nonetheless. That’s the right direction to go, you know? He was very happy to hear that I was running, and feeling good. Maybe he could even sense from the way I was speaking to him that my cognition has improved? I’m definitely more “with it” than I was when I first came to his office in 2013. He even commented that my hearing was improving, even though that isn’t possible post cochlear surgery, but I took that to mean he could tell I was comprehending speech better than before. So yay!

When he walked me out to the receptionist’s office after our visit he stood there, looking at me and said, “Now, you promise to give that husband of yours a hug from me, won’t you? You promise??” (He loves Mike, keeps telling me he’s a good man, which of course I know, but it’s still nice to hear) And I said, yes of course, but I want a hug too. So I gave him a great big hug. Then he looked at me again with this stupidly proud, fatherly-type grin on his face, nodded a few times, sighed loudly, and then turned and walked away. It was the strangest interaction I’ve ever had with medical personnel, but it was beautiful. While I don’t feel a whole lot different than when I saw him six months ago, he sees progress, and that’s good news. Lord knows I’ve had my share of bad news, and I’m always down for some good stuff.

Oh, and to top all this off, the dog didn’t destroy the house while I was gone! I’ve been leaving her out of the crate while I’m gone, for an hour or two at a time. This was the longest I left her out, but she did great! Didn’t chew anything up, didn’t relieve herself in the house, and she seems even more super duper happy when I come home. Now if we can just get her to stop barking at all the neighbors walking by…

Hearing Loss, Multiple Sclerosis

MS and Running

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This is in no way an “Official” post on what it’s like to run with MS, but the build up in my mind over the past couple weeks makes it feel like it is. I searched the internet in hopes of hearing from other runners with MS, but didn’t have much luck. Sadly, it’s probably not all that common. So I guess I wanted to share what it’s like for me, and if others find me and chime in, the more the merrier, right?

This whole running thing started more than a year ago, when we lived at a different house, in a different neighborhood, and the kids went to a different school. The bus stop was a 3/4 mile walk, so after the kids got on the bus, I would walk back home the long way, completing an almost two mile walk. It got me thinking that I could maybe walk 3 miles, or 3.1, which is equal to the popular 5k run. As soon as I verbalized this idea around my son, he was anxious to participate in a race with me. Now, his intention has always been to run a race, but I told him from the get-go that I wasn’t sure I could run it. The sweetheart he is, he said he would go at whatever pace I could. He just wanted to be with me.

See, my MS started with balance issues. I was falling a lot back then, and I still fall sometimes, or wobble when I’m turning my head. So I don’t trust my balance. To attempt running with poor balance seemed foolish to me. At the time, of course. Fast forward a little more than a year, and somehow I got it in my head that I could actually run. We have a treadmill at home, with handles for safety. I thought, “Why not try?” So I did. I downloaded a couch-to-5k program to give me some guidance, and I started training. You know what I found? I found that the intervals where I had to stop running and just walk briskly didn’t go so well. I actually did better if I just kept running.

But here’s the inside story, the way my body reacts to the running. In case you’re interested. The first thing that happens is that the ringing in my ears gets really, really loud. This tinnitus is something I experience 24/7, but it’s usually quiet enough that I forget it’s there. It’s just something you get used to. But after about 10 or 15 minutes of running, that ringing just cranks up to full volume. It’s how I know my body is working hard, I guess. And this actually has nothing to do with my MS, it’s just a side effect of my hearing loss. But I digress.

The second notable thing that happens to me is the foot drop. This is very common for people with MS. The Mayo Clinic describes foot drop as a general term for difficulty lifting the front part of the foot. Some whose disease is more progressed experience this all the time, or when they are experiencing a full-blown relapse. Mine shows up when I’ve been sitting for too long or am super-fatigued. And when I’m running, of course.  Now, when you can’t lift the front part of your foot, you often end up tripping on it. So when I’m running and I sense those toes starting to drag with each step, I have to really be careful to use all the muscle I have in that leg to lift my foot high enough to avoid tripping over my own foot and crashing head first to the ground.  The good news is that it’s only ever one foot at a time, but I never know which one it will decide to be on a particular run. I do know that it usually starts around the 2.5 mile mark so at least I can be looking out for it.

I’ve been training since early March, and by now I can run at least 3.1 miles. I run the whole way! No walking! Now I’m just working on increasing my speed. I’m pacing myself, but each run I push a little harder, run a little faster, and pray that it doesn’t kill me or send me into an MS relapse (I’m not sure that actually happens, but I plan to ask my neurologist). Overall my fatigue levels have stabilized, my blood pressure is strong, and I think I’ve even started building muscle. I feel stronger, inside and out.

My motivation started with just running (or walking) a race with my son, but it built into a more personal goal. Now I’m doing this for my health, and to give an emphatic “up yours” to this disease. I want to prove that MS doesn’t have to limit me. It’s a permanent condition, yes. I understand it’s here for the rest of my life, and someday it very well may take my legs. But not today, damn it. Today, these legs are still within my control, and with them I am choosing to run.

Our race is coming up on May 6, so wish us luck! And if you’re in town, come on down to the Mason State Bank and cheer us on 🙂

Daily Snippets, Family, Food, Health

A case of the Mondays? Almost.

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I tried really hard not to let Monday be the way Mondays can be, overwhelming and all. I think I did okay, despite it trying really hard to kick my butt.

I have a recurring muscle spam in my left shoulder and it was back with a vengeance today. When the pain is in full force it radiates all the way down my left arm, and it makes anything but standing up straight extremely painful. So resting was even hard to do. Go figure.

So I spent a good portion of my day trying to calm the spasm. Ice, Epsom salt baths, heating pad. Nothing has really worked, only made it somewhat tolerable.

But while that was the bulk of my day, I did have some positive moments. My new contact lenses came in the mail. And I made chicken noodle soup for dinner, which happens to be one of the few foods my entire family enjoys. So that made for a pleasant dinner time as we all just enjoyed the food and each other’s company. Still, we have leftovers, come on over! 🙂

Oh and my sister and I chatted our excitement about our upcoming appointment to get the matching tattoos we finally decided on after talking about for years (pardon the run-on). More on that later, and if later enough, with pictures!

Thanks for listening, folks. It means the world to me.

Daily Snippets, Deep thoughts, Disability, Multiple Sclerosis, Writing

How MS Defines Me

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I started this post three days ago, but didn’t get past the title. Now I’m deciding to continue with it, with the expectation that I can convey a clear and complete thought. Or maybe two.

I am fatigued. I am not handling it as well as usual, and I think that’s just because my running had given me a nice reprieve from the normal levels of fatigue. But having the kids home all week coupled with my MS medication running low (I get infused with Tysabri every four weeks), seems to have been too much on my body.

What bothers me most about the fatigue, at least this time around, is the effect it has on my cognition. I just can’t seem to make the connections, and even when I do, it takes an uncomfortably long time. So I’m awake, but I’m not really here. I struggle to finish sentences, I forget where I was headed within the house, I can’t put two and two together. And that’s frustrating, but I know this too shall pass. The kids go back to school tomorrow, I’ll go back to the infusion center hopefully Friday, and I will keep taking breaks when they are needed. And my family will be patient as always, they will pick up the slack where needed, it will be okay. We accommodate, together. I will get the rest I need. This is why I make the big bucks courtesy of Social Security, right? It will be okay.

MS is part of my life. It always will be, and I’m not sorry about that. It has taught me how to be patient and gracious, and how to laugh at myself. It has required strength I wouldn’t otherwise know I had. So yes, I guess you could say I am defined by my disability. I wouldn’t have it any other way.

Daily Snippets, Family, Kids, Photos, Vacation

Spring break smiles

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image

It’s Friday, the last day off from school for the “spring” break. It’s been snowing off and on since Saturday, which really put a damper on things. But we made our own fun. My sister and her kids (and dog) were here for five days, which was both crazy and awesome. Today the kids and I took the Spec-Tran to the nearby roller rink. I don’t skate because I don’t care for pain, but my kids love it. Only Natalie wore some low cut socks and quickly developed a painful blister. She’s pictured above, soaking her feet in a warm Epsom salt bath. And of course that’s her brother Luke photo bombing with the bunny ears. He thinks he’s funny, and sometimes he’s right. I guess.

That is all I’ve got for now. Happy Friday folks!

Cochlear implant, Daily Snippets, Miracles do happen

An anniversary of sorts

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You guys. I have to tell you what just happened. I was posting a video of a cochlear implant surgery on Facebook, and wanted to note that my implants were coming up on their anniversaries (for the surgeries, not the activations). My right ear was planted first, in 2014, and the left ear was implanted a year later. Both happened to be on the Friday before Mother’s Day. I knew this, but wanted to verify the dates before posting this fact, so I opened up my calendar. The first thing I noticed was the date of my upcoming 5k run – it’s on the Friday before Mother’s Day. Get outta town! That had not even occurred to me when I signed up. And I swear to you, I didn’t plan that left ear surgery to be on that day either. In fact, it had originally been scheduled for earlier but had to be rescheduled due to a lingering infection.

But stop right here if you aren’t fascinated by the coincidence of these dates. If you think it’s silly, just stop.

For the rest of you… how cool is that? It’s better than a birthday, and in a way more exciting than my wedding anniversary. It’s an anniversary of hope and healing and victory over struggles. I want to give it a name and come up with fun ways to celebrate it every year. Any ideas?

Daily Snippets, Disability, Domestic Engineer, Food

My exciting life

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I made a ginormous batch of potato soup for the crockpot this morning. Added all the leftover ham from Easter, diced an entire onion and threw that in. Threw in a little bit of chicken bouillon, dried parsley (which I’m convinced is just for show), and butter. It smells amazing and I can’t wait to eat it. There’s no way the four of us can eat it all, so we’ll have a lot leftover to freeze for another day. Win-win!

I’ve been working on laundry and dishes most of the morning. Those two never quit, do they? I just finished eating lunch, and now I’m left debating what to do next. More laundry, read a book, crochet, take a nap, run on the treadmill, walk the dog, watch more reruns of Parks and Recreation on Netflix… I just can’t decide. The nap is really tempting, but I know a walk or run would really boost my spirits.

This is my exciting life, folks! This is a normal day for me, and while it has taken quite some time to adjust to it, I’m finally starting to enjoy it and feel comfortable. I think this is the Acceptance part of the grief process. I am finally here, and can honestly say I am happy and really want to stay.

Oh, but that’s not what I got on the blog to talk about. Shoot. I guess I’ll have to draft that up and post it tomorrow 😉

Cochlear implant, Multiple Sclerosis, Partial Blindness

A little sense of freedom

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I’m trying to become a contact lens wearer. I used to wear them, years ago, but gave it up for some reason. So I figured it would be no big deal to join that club again.

I was wrong.

With my MS relapse and resulting vision loss in September 2013, I have a significantly unique challenge. While my left eye has the stronger prescription, the nerve damage left my right eye with a very small field of vision. My brain has adjusted since, so it doesn’t even pay attention to what the right eye “sees”. What normally happens when you close one eye is that everything you see shifts to the left or right, right? Well, that doesn’t happen with me. What I see with both eyes is exactly what I see with the left. Meaning my right eye is essentially blind. Where I’m going with this is, when I try to put a contact lens in my left eye, it’s jarring to see my finger coming straight at my eyeball, and it’s impossible not to blink. So I’ve been having trouble putting them in. A week ago Saturday I worked so hard to put them in, and then all day I was feeling frustrated with what I was seeing. I thought it was just because I was outside a lot, and I didn’t have the anti-glare feature that my glasses give me. That night when I went to take them out, I discovered there was no contact in my left eye. After feeling around on the bathroom counter, I found it. All dried up. I had to go back and get a replacement. Then this past Thursday when I took them out, I inspected them before putting them in the case, and noticed a small tear on the side of the left one. Strike two. I know I have to practice and find a system that works for me. The only trouble with that is that contact lenses are not really built for the level of practice that I am subjecting them to, apparently. Not to mention every time I drop the lens I have to fish around for it with my hands because even with the tint on the edges, I can’t see the lens because it blends in. I need high contrast.

All that to say, I ripped two lenses already, and was growing very discouraged. Because when the contacts are in, and I’m walking around sans eyeglasses, I feel so FREE! So uninhibited. It’s hard to describe the feeling, or rather the importance of the feeling. It’s like there is one less thing to worry about, if only for awhile. The literal weight off my ears is fabulous. The cochlear implants are there no matter what, so it gets crowded. With contacts, I can wear sunglasses come summer, I can run without having my eyeglasses slide down my sweaty nose, and I can swim with my kids and read lips and recognize faces!

I went back to the eye doctor today and she suggested getting some color contacts, which would be much easier for me to see, making the inserting process much easier and hopefully minimizing the risk of tearing the lenses. The only problem is that the colored lenses cost twice as much as the clear ones. That and the colored portion does seem to interfere a smidge with my field of vision. I’m wearing a pair right now with no prescription in them, just to try out.

So now all day I’ve been debating whether it’s worth the extra cost, and whether that smidge bothers me or not. I think the Smidge (I’m calling it that now, I may as well capitalize it) is very slight and I don’t really notice it once I get focused on other things. And after writing that last paragraph about all the benefits of contact lenses, I think I’m leaning toward going ahead and getting them ordered. I swear, I’m so indecisive at times I drive myself crazy.  But I’ll give it another day or two just to be sure. That would make Wednesday my deadline for making the decision. So there, Wednesday it is!

How’s that for letting you in on my thought process? There were other things I wanted to blog about but they will just have to wait for the next one. Happy Monday, y’all!

 

Daily Snippets

Dudes. I dropped my phone.

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In the toilet. And while it’s now resting peacefully in a bag of rice, I feel lost without it.
I handle most of my communication via texting. I keep track of my household chores and things to do using apps on my phone. I read books on my phone. My daily prayer list is there. My running app is on there!
Most of the things are backed up and I will be able to recover them, and I can still communicate with people using Facebook and the good old fashioned home phone (with captions, of course), but guys! I dropped my stupid phone in the stupid toilet! I was at our old house, cleaning so we can put it on the market and get the dang thing sold, and while scrubbing the toilet I received a text from my husband and thought there was no harm in checking it immediately. It all happened so fast, and believe me, I wasted no time shoving my bare hand in the toilet water to rescue it. Tomorrow we will know for sure if it survived, but until then I’m off the grid a little.
The irony is that just last week I ordered a new battery case/cover for my phone, a paisley one, and I may have to return it. Only time will tell, I guess.
I’ll be checking my email and Facebook messages periodically, but in the meantime, send cookies!
This is so sad. Seriously, I think cookies will help.