Category Archives: Multiple Sclerosis

Rainy days

It’s raining today. Storming, actually. It’s been awhile since we had a thunderstorm during the day like this. We’ve had a couple overnight, but those are no fun because I can’t hear the thunder. I don’t wear my cochlear implants overnight. Usually my daughter tells me all about the storms the next day because though she usually sleeps soundly, she is sensitive to the noise. That and she worries about lightning striking and all that. So it makes for rough nights for her, while I secretly envy that she can hear the thunder.

So. Today’s storm is nice. It’s dark and cloudy though, which makes me want to go back to bed (which I did) and stay in my pajamas all day (which I am). I’m also roasting a butternut squash to make soup, so the house smells like autumn. My sister and I have our annual retreat to the monastery this weekend, and this year we decided against planning an elaborate menu and instead are each bringing a homemade soup. We think between soup, salad, and snacks, we should be set for the weekend.

My plan for this year’s retreat is to get a big head start on my book. I want to read through the past five years of journals in order to get an outline or map of sorts of what I’m going to say. That’s a giant task and not something I feel like I can do sufficiently while I’m here at home. Distractions and all. I am very easily distracted.

I still feel like I have this nagging voice that tells me I can’t write a book, not one worth publishing anyhow. That voice I need to just keep telling to shut up. Lots of people less qualified than me have written books so I have no reason to believe that voice.

What else is going on? I started leading Financial Peace University this week for my church. We have a small group but it happens to be very diverse. People from every walk of life. Newlyweds, single, married with kids, empty nesters. It should make for some really interesting discussions as the weeks go on. I’m very excited to be doing this class. For one thing, I needed the refresher, for sure. But also it just feels good to be able to give back and serve God in an area I feel like He’s given me a passion for. I was a ball of nerves this first week, because my vision loss and difficulty hearing still give me great social anxiety, but everyone was extremely understanding and gracious. I’m confident it’s going to be a life-changing class for everyone.

Speaking of social anxiety, I’m also in a women’s weekly Bible study and yesterday was my first time going. I attended last year and loved it so much, I’m doing it again. However, I had a lot of trouble hearing people in the discussions as well as reading the materials they hand out every week. There’s not a whole lot I can do about the discussion because you can’t expect to completely retrain people to speak a different way just for that one hour a week, so I’m learning this is an area I have to accept not being able to hear everything. I just have to accept and be thankful for the words I CAN hear.

As for the lesson handouts, I had been scanning them into pdfs every week so that I could read them in high contrast on my computer or tablet. That was kind of a pain, but it worked well. It only occurred to me after the class had ended that I should have been scanning my answers to the questions as well, because every week I would get to class and struggle to read my answers during the class discussion. This year I am super excited because they offer the lessons and questions in pdf format, so I don’t have to do all the scanning! It may be hard for others to understand my level of joy here, because until you’re faced with the daily difficulty in seeing and hearing things, you just can’t imagine it. I know it’s something I took for granted, for sure. If you are reading this and you have fully functioning eyes and ears, will you please just take a moment to thank the Lord? Because not everybody has that luxury. It’s so hard, people. Not impossible, just hard.

Well, my squash is roasted so I need to go saute some shallots and garlic and get the soup assembled. After that perhaps I’ll do some crocheting. I’m on my third of thirteen afghans for each of the nieces and nephews. A perfect rainy day activity, wouldn’t you say?

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Drop me in the river

My daughter and I went camping last weekend. We left on Wednesday and came back Sunday so it was a little more than a weekend. My kids (and sometimes me too) have camped with the church my dad was pastoring for the past four or five years. He is no longer pastoring the church because he is retired, but the people really bonded with us and invited us back this year. I’m so glad we went, and I hope to join them in future years, but the whole time I was there I was dreaming that we could do similar trips with our own church family back home. Someday. We’re still growing. Right now we do a camp thing but it’s just one night and it’s held on one of the family’s properties. Also, my family has not yet been able to go. Conflicting schedules and all that.

Anyhoo. The camping trip for me consisted of a lot of relaxing on the porch of our cabin, crocheting and reading. The occasional walk around the campground to chat with people. I did not see much of my daughter because she was off riding her bike and playing with the other girls. One of the girls had brought about a dozen headbands with mermaid sequin cat ears, so they each wore a headband for the duration of camp. They dubbed themselves the “kitty cat club” and I can’t even tell you how that warms my heart. That all these young girls so quickly bonded. All of the mothers and grandmothers were touched to see their bond and we hope to keep them all in touch by good old fashioned snail mail. Perhaps they can remain friends throughout school, and make appearances at each other’s graduation parties. The last night of camp they all sat around and cried because they were sad that camp was ending and they wouldn’t see each other again for a very long time, if ever.

The first full day we were there we went for a canoe ride on the river. It was so wonderful and peaceful. Until the very end. Just at the end where everyone docks we hit a large rock or log and the current of the river yanked us over. Y’all, I was so freaking scared. I saw Natalie and her friend floating away towards the dock, and then I saw my AquaMic, my waterproof case for my cochlear implant, floating away. It had come off my head and life vest in the fall, and I was struggling to catch it before it was lost forever. It took a couple grabs but I was able to secure it and get back to shore. That’s when I saw my shoe floating away. Gah! Just a shoe, I know, but still. One of the older boys at the shore, or the gentleman who had been steering our canoe, I’m not sure, was able to get to where the shoe was and grab it for me. I did not want to have to walk around camp the rest of the weekend in flip flops. But really, I was mainly happy to be on dry land and could see that Natalie and her friend had made it safely to shore as well. When I walked over to her, she was almost in tears. She said she thought she was going to lose me. That’s when I realized that I must have put on quite a spectacle of fear when I was trying not to lose my precious cochlear implant. I felt really bad but she got over it pretty quickly once we went and got ice cream, so it was fine.

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Oh, I almost forgot about my phone. I was wearing my running belt to hold money for ice cream and my phone in a Ziploc bag. I took it out at the ice cream shop to check it and realized right away that it was not doing well. Those Ziploc bags are not airtight, I guess. Or I hadn’t closed it tight enough. I freaked out a ton because my phone is my connection to the world, as I’m sure it is for most people, but my nextdoor cabin neighbor had rice that I was able to leave the phone in for the remainder of camp. It didn’t fix it completely, as I still can’t use my “back” button unless I use the phone’s stylus, but it’s otherwise fine. Answers calls, sends texts, my books are all still there. It even charges normally. So it’s only minorly disabled. Kinda like me, you could say.

The day after that canoe event we had a tug of war between the guys and gals. The tricky thing is that they do tug of war in the river. It’s shallow at the shore but it’s quite rocky and the rocks are sharp and slippery. I tripped/slipped on a fairly large rock and bruised my shin pretty well, and then went on to assist the girls in winning a match. When they made us switch sides it was a different story because that’s where all the rocks were so it was almost impossible to gain a good footing. They tried to get me to join them the following day for a rematch but I told them no. That river and me were broke up and I had no interest in going back for more abuse.

I was pretty wrecked by Saturday afternoon, and kind of ready to go home. My legs weren’t moving right, I had bruises and pulled muscles all over the place, and I missed my shower. So I’m very happy to be home, but my body is telling me it’s still not recovered from all the activity, so I’ve dubbed this entire week a Week of Recovery. I’ll be resting as much as possible, with the hope that I’ll be back to working conditions by Monday.

 

2018 Squirt Gun 5k Fun Run

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

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

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

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

Another random, lame update

It’s Wednesday. I had a great visit with my neurologist this morning. It was nice to be able to tell her about all of the positive changes I’ve been making and my lack of MS symptoms. However, I did bring up my concerns with brain fog. A friend shared a really great article the other day about this, and it very eloquently listed what people with chronic illness experience. Sadly, it’s not just limited to people with MS. I am walking great, I have no fatigue, no pain (unless you count the occasional headache), and I’m overall feeling really fantastic. However, every day, throughout the days, I have issues with short term memory loss and cognitive function. I can’t tell you how many times I’ve walked up the stairs and forgotten why I was there. I will often use a wrong word or name when talking with people, and not realize it. Sometimes even, I’ll forget what I’m talking about mid-sentence. And friends and family will encourage me that this is just a normal part of aging and that they experience it too. Which is nice, and appreciated for sure, but I really don’t believe that they experience this phenomenon with the frequency I do. So I told my neurologist about this and she said it may or not be MS, but there are ways to check, starting with testing my blood to see if some of my levels are out of whack. If that’s the case, I suppose it’s a simple fix with supplements. If not, there is always the option of memory testing and exercises. I had no idea that sort of thing existed, so it gave me some hope that this is a problem that has been addressed by the medical community, and I’m not coming in with some sort of weird cognitive mystery.

In other news, I slacked on laundry for one measly day and it magically piled up and threatened to take over my bedroom. I folded (and put away!) five loads of laundry today and now I would love to nap but I need to stay awake so I can answer questions for my grocery shopper, and then be up when she delivers my groceries. I LOVE grocery delivery, people. Love it.

So I think I’m going to make a glass of sweet tea and read a book or do some crocheting while I wait.

Results

I just have to say, when you hit 10,000 steps before noon? Feels pretty darn good. But also, I am still going strong with Crossfit and have proof it’s working. Now, I must keep in mind I had started running regularly a little over a month ago, so that could have helped jumpstart this process and possibly why I’ve noticed results so quickly. I don’t expect most people to see results after only 3 weeks of strength training. I’ve been running a couple miles a few times a week on days I don’t have Crossfit, so that all helps too. But here’s the good news: I’ve shaved almost two minutes off my mile pace. I don’t know how you’re supposed to phrase that, but it means I was running 14 minutes miles, and now I can run 12 minute miles. Of course the longer I run, that goes down some as my body fatigues, but it’s definitely an improvement.

The other great result is that I’ve lost 5 pounds! I wasn’t even expecting that. I’m not heavy by any means, but I had gained enough over the past year that my favorite jeans were not fitting anymore. So I’m happy to be heading in the direction of fitting into those jeans again.

Those are my quantifiable results. Two minutes, 5 pounds. What I can’t quantify – and probably the most exciting of all – is how good I feel. How NOT fatigued I am. How I am moving around without struggle. Daily chores have been reduced to more of a mental challenge than a physical one. And yes, I’m tired by the end of the day. But tired is different from fatigue. Tired has a good reason. This daily exercise is no joke, and when I sleep, I sleep hard. But it’s all so worth it.

 

I guess we can be friends

Okay, I used to make fun of the Crossfit people because I felt they were a bit fanatic and really, nobody likes to hear about other people doing healthy, impressive things like lifting heavy weights and stuff, when you’re just sitting at home watching Netflix most days. And when I say nobody, of course I mean me.

Now I don’t know if I’m becoming one of “those” people, but I’m certainly enjoying the results I am seeing from Crossfit. Already!! I’ve only been to four sessions so far but already my body is responding well. My last run on Monday was incredibly smooth and strong, which was pretty encouraging for me. I can tell my body is changing for the better.

Also, I just feel overall stronger. My legs especially are feeling almost as if they can be relied upon. Like, I can really count on these legs to not only hold me up, but move me around the house with ease. With EASE! I feel like this is a ridiculous thing to be pointing out, because it’s probably such a normal thing for most people. Right? I mean, do you ever stop to think about how your legs get you from point A to point B? Well, I think about it daily. I never take it for granted, because there is always the memory of when they couldn’t, and the looming fear that someday they will fail me again. And I think about how hard it is to move them on days I’m fatigued. So when it occurs to me that I’m moving around the house as easily as I have been, it’s extremely apparent that I’m not expending nearly as much energy as I used to. I’m thinking, “this is how walking should be! Easy! You say you’re gonna go and then you just go!”

So, Crossfit. I guess we are going to be friends after all.

Sporadic memory loss

I have issues with memory loss. I can’t say for sure if it’s a result of aging or if I can blame it on the MS. It’s spazzy enough that I would be inclined to credit MS for it. It’s both long-term and short-term memory loss. Gaping holes that I just can’t seem to access.

It is a minor nuisance, but my husband and kids have gotten so used to it we just laugh it off and move on with our lives. However, I’m doing this work for the church now, and it’s a whole new group of people who have yet to experience my memory loss issues. And I’m feeling a lot self-conscious as I interact with them. They ask me questions and I tell them I’ll get the answer for them but then I forget the question. Or, like today, I forgot where the question had been posed. Was it strictly verbal? Was it in a board meeting and I wrote it down? I have that inner nagging that tells me there was a question that needed answering but that was sort of the extent of it. Well, I did remember the overall subject so I sent an email to answer the question I guessed had been asked. And then after hitting send I found the email with the original request. And I felt ridiculous, because I didn’t exactly answer their question. Like, you’re aiming for the bullseye and you’re just a few inches off.

Okay, that’s not really what I wanted to blog about today. I should save that discussion for my therapist.

OOH, my therapist! Did I mention I’m going to therapy? For the depression, and I tell you it’s really helping. I leave every session feeling positive and encouraged and like everyone should go to therapy because it’s just so *useful*. I’m learning about the lies I tell myself and it’s fascinating, really. Okay, that’s all. More tomorrow, peeps. Enjoy the sunshine.