Category Archives: Disability

Courage

Yesterday was my scheduled long run of the week, in preparation for my very first half marathon in 36 days (but who’s counting?). I planned out my route, a simple 5 miles out through town and on to the park trails, and 5 miles back. I started out feeling really strong, and I was excited for this run because up to this point my longest run had been 8 miles. I knew I was going to have to walk for parts of it, to rest my knee, and I was okay with that concession.

Do you ever embark on a new challenge and you feel really confident about it, only to fall flat on your face, metaphorically speaking? Well, I did this, only it wasn’t metaphorical. A mile and a half in to this long run, I tripped on the sidewalk and fell Flat. On. My. Face. I sat on the grass between the sidewalk and the street and inspected my wounds. Were my teeth still in tact? Was I gushing blood? Were my cochlear implants still on my head? Yes, no, and surprisingly, yes. After about 20 seconds I stood up, brushed myself off, and continued to run. But as I ran I could feel my upper lip swelling and I could taste blood. I decided to call my husband, who happened to be working from home that day, and ask him to bring me some ice. Until he drove up to give me the ice pack, I fully intended to run the remaining 8.5 miles with a fat lip and what would eventually turn into a massive headache. I think he could see that I was on the verge of tears, and he suggested that I ride back home with him and just rest a bit, that I could always go back out when I was ready. After a few moments of hesitation, I said yes. I kept my running clothes on for several hours, under the delusion that I would go back out and run the 10 miles. But then the headache came, and I decided I was better off taking an Aleve and sleeping for awhile. I could always try again Saturday.

So Friday felt like a bust and I woke up Saturday knowing this was my day to get that long run in, but really feeling like I need to be safer about it. This had been the 3rd time I fell this month, and while I need those long runs to prepare my body for 13.1, I don’t think it’s wise to run so far from home without a guide. I can still get the same workout on the dreaded treadmill in our basement. I hate running on the treadmill, but I need to get ready for this race, and not injure myself in the process.

To be honest, I woke up Saturday not really sure if I was going to run or not. But then I was on Facebook and my friends were posting reports of their long training runs. And then a friend texted asking how my face was doing, and another friend reminding me that yesterday’s fall was not failure, because she still remembers when I needed a walker to walk. So with a few messages of encouragement, in just a matter of minutes, my extreme discouragement transformed into full-on Courage. I was ready to run these miles. The icing on the cake, folks, was when I walked down to the treadmill and was reminded of the picture I keep above the display that says: “There will be a day when I can no longer run. Today is not that day.” I had forgotten all about it, but you can bet that was the final word of encouragement I needed to make sure I got that run started. And once I start, you better believe I’m a stubborn mule and I will finish, dang it.

I learned some things about running on the treadmill. One, when you run longer than 99 minutes, it stops moving and restarts the timer. Thankfully it didn’t reset the distance because that would have really frustrated me, but I ended the run at 9.99 miles just to be on the safe side. Some other advantages to the treadmill are that I can watch tv, I can stream Pandora without using data, and I have immediate access to a bathroom. So it wasn’t all bad. I did struggle with finding a good pace but I suppose that’s all part of the training. Better to figure this stuff out here in the safety of my home, than out on the course on race day.

I’ll be honest, compared to most of my runs, this one was pretty sucky, but it’s done and I have to be okay with that. My legs didn’t fail me, although my knee did cause me to fall once so I was glad I had a grab bar, I had zero drop foot issues, and I was actually able to finish with a very slow jog. So it’s a win in my book, whether I like it or not. Two days of rest and then I’ll be back out again for some short runs!

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Waiting for the crash

Last night I stayed up way too late watching Pretty Woman on tv. Because I don’t know why. Because I had recorded it, and then started watching it not being entirely aware of the time, and then not being able to turn it off in the middle. Because you’ve gotta finish what you’ve started, right? I won’t get started on what a classic, feel good movie that is. It just is for me, and I don’t care if you judge me for it. Julia Roberts is just genius in that role. That’s all.

Anyway, so I was up way too late, and then had to get up early this morning to wake my daughter to get ready for the second day of horse camp. Then, even though I kept telling myself I was going to go back to bed, I just sort of kept moving on with my day. Luke and I rode bikes to get lunch at Taco Bell, my vitamins from Rite-Aid, and then ice cream at Sweet Sensations. It was a great afternoon, and then I thought maybe I would catch a nap before Natalie got home from camp, but I just, well, didn’t. Then I made dinner for the family and now I’m sitting here wondering when I’m going to hit that wall of fatigue. Yet, it just doesn’t seem to be coming. Hallelujah, praise the Lord, I’m operating like a normal healthy person!

This may be the healthiest I have ever felt. I don’t even remember having this kind of energy when I was in my twenties. I’m sure I did, I just don’t remember it, ha! So I’m writing this down so that I can remember how I feel and perhaps what I’m doing to feel so good. I believe it’s all the healthy things combined that work together to allow my body to operate at its best. Staying active with running, cycling, and walking. Eating my fruits and veggies, taking my greens daily, drinking lots of water. Even the celery juice I’ve been drinking every morning seems to be having a positive effect on my sleep quality, somehow. I know the celery juice is a fad right now, but you never know, this might be one that sticks. We shall see. But all the exercise and the healthy eating (with itty bitty cheats here and there) is really working.

The best part about feeling good is that I am feeling confident about the upcoming commitments I’ve made: leading a bible study, a discipleship group, and a Financial Peace class. I’m not afraid that it will be more than I can handle, or be too much to take on as a person living with MS. I do realize that none of this healthy living makes me immune to a relapse, so I’m keeping a level head about that, but I’m praying that all this healthy stuff I’m doing will make a relapse far less likely. I’ve always said I don’t want to let fear drive my decisions, and that applies here. I can’t say no to these exciting opportunities to serve God for fear that I’ll relapse. I’m trusting that He’s the one that gave me these desires and that He’s leading me down these paths, and if that’s true, He’ll take care of the details. M.S. is no match for my God!

Just an overall great day

Today was a really great day. Nothing out of the ordinary or spectacular, it was just a good day, so I wanted to share before I head off to bed.

The kids and I went to church this morning. Hubby was at a shooting competition so it was just the three of us. We had been preparing to ride the bus, but were able to secure a ride with the pastor’s wife at the last minute. So while we were a bit excited about doing something new by riding the fixed route bus, we were thankful we didn’t have to get up super early to catch the bus. We’ll hopefully try again on another day before the summer is over.

Church was great, as usual. I love my church family, because they are just like that: family. I was able to have a bit of time after the service to catch up with the some of the other women and invited two of them to BSF in the fall.

The afternoon was spent relaxing, having lunch with the kids, chatting with my sister, and doing a bit of bookkeeping for the church. By the evening, after dinner, I was feeling pretty sluggish and the sun hadn’t set yet, so I threw on some running clothes and went for a quick two miles around the neighborhood. I’ve been doing a pretty good job with resting my knee and doing the exercises the doctor gave me, and tonight’s run really showed me that it’s paying off, because I only took a few brief walking breaks and I had no knee pain throughout the run! Even after I got home I didn’t feel any pain. Not only that, but my pace was pretty strong for the time I was running, at around 11 or 12 minutes, which is pretty fast for me. I usually average closer to 13 minute miles. So I was pretty ecstatic about that run, and it really gives me hope that I’ll still be able to complete the half marathon in 56 days!

I’m excited about the upcoming race, but I’m even more excited about a lot of leadership opportunities I have coming up. Leadership is not necessarily my comfort zone, but I feel like God has really been working on me in this area, and helping me to step out of my comfort zone little by little. I can still be my introvert self and interact with others. I really enjoy getting to know people and hearing their stories. In the fall I’ll be leading a Bible Study Fellowship group, a discipleship group through my church, and Financial Peace University. That sounds like a lot, but I’m hopeful I’ll be able to keep a good balance and manage my time well enough to handle it all.

Shifting gears here, but I recently saw the dermatologist and I thought it was just going to be a follow up to get refills on the antibiotic for my rosacea, but the doctor I was seeing left the practice so I was seeing a new one. Not new to the practice, just new to me. I was very reassured from the minute he walked in the room because he actually examined my face under the light, and the last doctor never did that, which I always thought was odd. This new doctor is changing up my medication a little bit and putting me on something stronger, with the hopes that eventually I won’t have to take the antibiotics. He also gave me a prescription for a cream that should help the specific problem areas on my face. So that was a really positive visit and I went home feeling hopeful that we can get my face cleared up even more.

So the last couple weeks were filled with a couple doctor’s visits, my monthly Tysabri infusion, and lab work to make sure I can still take the Tysabri. Then in a week or so we go to the dentist for cleanings, and take the kids to the orthodontist for evaluations. Not exactly your idea of summer fun, but you gotta do what you gotta do. Being healthy is super important to me because if I didn’t have this energy, I wouldn’t be able to do any of the volunteering that I’m signed up to do. So I’m staying focused (i.e. mildly obsessed) with the running, daily exercises, eating my fruits and veggies, drinking my greens, and taking my vitamins. Staying healthy for this M.S. girl is kind of a full time job.

Annoying habits

I have this tendency to latch onto a thing – an idea, a method, or a new habit – and become obsessed with it. It’s crazy annoying. For awhile there I was obsessed with running, and one might say I still am, but I think it’s just become something I really enjoy. I don’t have to remind myself to run regularly. I just do it because I want to. I feel “off” when I don’t.

So right now I’m still a little obsessed with my new eating plan. It’s going well, I just am waiting for it to become a true habit so I don’t have to think about it so much. It will just become “the way I eat”. I’m really hopeful I can get to that point, because I’m loving the energy I have now and I don’t want to go back to battling fatigue.

I’ve been running three times a week, and on the other days I’m doing exercises at home. I think the exercises are helping my running. I’m still having knee pain when I run but I went to a free injury clinic at the local running store and they assured me there was no damage. So they said I’m okay to run, with caution, and encouraged me to keep my appointment with my primary care doctor. So I’m running short distances (2-3 miles), but with walking breaks in between as needed. I’m doing lots of stretching, elevating, and using Icy Hot to manage the pain. My hope is that I’ll be able to keep building my stamina for the half marathon while waiting to see what I can do about the knee.

It occurred to me yesterday that I am in a major state of boredom. All this energy, and I’m running out of things to do with it. Without giving it much conscious thought, I have apparently turned to online games and shopping. The online games are harmless, aside from being colossal wastes of time, but the shopping could be more problematic. I am spending money on things we don’t need, and that’s not a good thing. We live on a budget, and we don’t borrow money, so the money I’m spending comes out of necessary budget categories, like food and utility bills. Stuff we have to pay for, right?

So I’ve decided I need to find something more productive to do with this energy. I just don’t know what that is yet, but I’m sure I’ll come up with something. I’ve got some crochet projects to start and finish, and a couple people I would love to send notecards to. Also, I haven’t vacuumed in awhile, so I might get to that this week. Maybe.

What are you up to this week?

How my phone is like me

I use my phone every day, all day. It has tons of useful features to support my life. It helps me keep myself and my family on track. Lately I had a thought I wanted to share. My phone is like a metaphor for my life. Let me explain why.

I was canoeing a couple years ago and the canoe tipped over. My phone was in a Ziploc bag, in my running belt, and water leaked into the bag, damaging my phone. I was able to soak it in a bag of rice for awhile, which restored most of its functions, but the one thing I can’t do is use the back button and that other one on the bottom left (the one that shows you all your open apps).

However, I found a workaround by using the s-pen to use those two buttons. The phone responds to the s-pen, just not my finger. A couple weeks ago I was replacing the pen into the phone and it snapped on me. It still works the way the pen should, it just doesn’t have that spring action needed to get it back out of its slot. So now if I want to use my back button, I need to bang the end of the phone on the heel of my hand in order to get the s-pen out. Other than that, the phone works great! It’s kind of ridiculous and it makes me chuckle.

It looks like a completely normal, functional phone. It just has a few broken features but there are workarounds. And that is a metaphor for my life. I am deaf but I have cochlear implants to help me hear. I am visually impaired but have friends, family, and public transportation to help me get around. I look completely normal, I just have a few broken pieces and I have my workarounds I’ve discovered I can use in order to continue functioning. So there. That is how my phone is like me.

Madam Sleepsalot

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

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

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

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

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

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

You are enough

People like myself, who have been sort of thrust into permanent disability, use a phrase – “finding my new normal”. It refers to the process of acceptance of this new life, this new way of living, and embracing our new challenges and setbacks. For me, it refers to finding a space, figuratively speaking, that feels like home. I’m searching for comfort, for peace of mind, for a mental and emotional state where I can put up my feet and relax and be okay with just being who I am, HOW I am, as is.

This past weekend I was praying during my morning quiet time with Jesus, and I felt God speaking to me a very clear message. “You are enough. You are complete. As you are.” This blew my mind. I didn’t even know how much I needed to hear that, but boy was it a game changer. Up until now I think I’ve sort of been trying to be who I was – despite my limitations – and that’s very frustrating. Futile, in fact. What I believe God is saying to me is that I can be who I am now. That’s it. Warts and all! Just be who I am now. I am enough.

“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.” Psalms 139:13-14

I’m sharing this snippet from my personal journal because I want you to know this message is for you too. Wherever you are, however you are, you are enough. Right where you stand. You are enough. Your Creator knows where you are, how you got here, and He’s got you covered. He’s molding you like a potter molds the clay. It might be uncomfortable, painful even, this molding process, but the end result is a beautiful piece of work. You are enough.

“But now, O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.” Isaiah 64:8