This Month: January 2017, part 1

I had thought I was just going to go ahead with monthly my-life-lately-not-necessarily-about-ms posts, as opposed to the weekly ones I did last year. But then a few of my nearest and dearest have been hassling me letting me know they are missing the weekly updates. So, this is a compromise. Twice a month, you'll get a little glimpse into my life. I also hope to get out at least weekly MS-specific posts. This next week, you'll get one of the last two symptom series posts. These last two are the hardest to write, so I've been procrastinating.

The view from here:

Technically this was December 31, 2016.
Playing my horn at a wedding in a stadium!

My niece has a habit of adding items to my calendar on random dates.
This is the first thing I had on my agenda for the new year. ;-)

2017 is Year of The Rooster

Middle of the night light snow showers. 

Too cold to step out the front door to get a shot.

It just won't stop. Toooooo much snow.

Tysabri time.
2nd time ever I've gotten a private room at this infusion center. SO MUCH BETTER.

There was a 4-hour gap this time between the doc appt and the infusion. Coffee + book time!

Interstate sunset gazing.

Moon over the frozen lake.

Winter sky.

Made frittatas for the first time in a long time.

Tea in this sweet bookish mug, a gift from a friend who gets me. A riend who no
longer has a good excuse for not writing a guest post for this blog. ;-)

While drinking that cup of tea, this was my first play in a round of Words With Friends. :-)

Another too-cold-to-go-outside-for-the-shot sunset shot.

This ad on my Instagram feed cracked me up.
When I sweat, it is always with Kayla.

Discovering a big old leak in your basement just before midnight is always fun.

Quasi MS-related story related to the leak: As I said, this was late at night. I did not want to have to call the maintenance guy. I go out of my way to not call the maintenance guy, like I've actually fixed plumbing issues myself by buying the part and watching YouTube videos to not have to call the maintenance guy. Something like this, though, was obviously beyond my abilities. So instead of calling the maintenance guy, I texted my brother a bunch of pictures, videos, and questions. Is this dangerous? Is there any compelling reason this couldn't wait until morning? And so on. He told me, it was *probably* not dangerous, but he couldn't really tell from my pictures and videos how close the electrical wires were to the leak. He told me definitely not to touch anything, though. He said that this was pretty urgent, as it would mean a massive water bill and it could potentially damage the ceiling/floor.

In my gymnastical efforts to not call the maintenance guy (he was probably sleeping, after all) I asked my bro if I could just turn off the water and wait until morning. Yes, he said. And then he tried to explain what the shut-off valve would look like and where it might be. Only one room in the basement has any light at all, so my search involved using my phone flashlight. It did not go well. At all. I finally reached a point where I had to contact the maintenance guy but I realllllly didn't want to. My bro kept texting me annoying things like "You better be calling him now." and Even if he's sleeping." and "I know you don't want to but do it anyway." and "Call him right now or else." I wrote back, "Ha, you know me too well."

At this point, I sent the maintenance guy a text. Bro said fine, but if he doesn't answer in a few minutes, I had to call.  A few minutes passed, so bro started harassing me to make the call again. Naturally, this reignited my efforts to find the water shut-off valve. I started sending my bro pics of random things I thought might be the shut-off valve. No luck. Finally, I discovered a new valve and turned it. The water stopped. It was a sweet victory. My bro said I was off the hook for calling that night and "I guess having to call someone really motivates you." And now, finally to the MS-relevant portion of this rambling tale. Bro texted, "Save your spoons for something more important than the maintenance guy." I recognize that he makes a good point, but I doubt that will change my future avoiding-calling-the-maintenance-guy behavior. But this #spoonie loves that he said that. :-)

My MS Symptoms Top 10 Countdown - #7 Fatigue & Lassitude

With over 80% of people experiencing it, fatigue is one of the most common symptoms of MS. It has definitely been a major symptom for me, and one of the most persistent. There are two different general categories of fatigue in MS: fatigue caused by other MS issues and lassitude.

Fatigue Secondary to Other MS Issues That I've Experienced:

• fatigue from not sleeping well, from frequent nighttime waking from nocturia, or because of chronic nerve pain
• fatigue arising from extra efforts needed to do normal tasks, like walking
• fatigue from depression

In other words, this fatigue is not unlike the fatigue anyone feels when they aren't sleeping well, or they're depressed, or they're working too hard. While all those examples of fatigue have been big challenges, the worst kind of MS fatigue and the one always with me, is called lassitude.

Lasstitude:

Lassitude is almost always there, though it's worse some days than others. Some days it completely colors my world in a shade of gray. It's a soul-sucking overwhelming kind of fatigue. It's waking up after 10+ hours of sleep and feeling utterly exhausted. It's being completely done in by normal activities like showering or grocery shopping or working. It almost always gets worse as the day goes on, and it generally worsens with heat and humidity. Lassitude is feeling weary and listless and sluggish without any good reason to feel that way. It's being too tired to think straight, to speak coherently, to understand what someone else is saying.

This kind of fatigue is almost impossible to understand if you haven't experienced it. It can be a lonely feeling. If I mention to people that I'm tired or worn out or exhausted, I often get back some kind of immediate response like, "Oh, I know! Me too!" and some kind of comment on how there is x, y, and z on their plate and it's all so tiring. It's not that I think those aren't valid reasons for being tired and it's not that I don't believe that they truly are exhausted, but usually, if I express that I'm exhausted (I tend to not really express much of the truth about how I'm feeling to most people...I'm usually "fine" or "okay") I mean I'm in a deep, weary state of total lassitude. As my baseline. So things like showering and working and living take more out of me than there is to take. There's a little immature, tantrum-throwing part of me saying in my head, "you don't even know tired!"

I'm considering deleting that last paragraph, as there are a few people in my life who are now going to be extra paranoid about ever telling me they are tired after reading this. Please don't be, dear ones! I'm not bothered generally by people telling me they're tired, it's just the times when someone's automatic reaction to me telling them I'm tired or exhausted or worn out is to (even if not truly intentionally) try to out-tired me. Sorry, folks but I'm very competitive, and the tired-off is a competition I always win. ;-)

How I deal with the fatigue:

This is a challenge, and there's often not a whole lot I can do. I occasionally take medication to try to give me a little extra oomph, but I dislike some of the side effects and it's not really all that effective anyway, so I try to limit it to when I have a stretch of big, long, extra tiring days.

Then, there's the ever-present challenge of balancing the spoons. On the days when lassitude is at its worst and I wake up with less than a normal day's worth of spoons, I have to carefully decide how I'm going to expend my very limited energy. I'll delay going to the store, put off cooking something elaborate or even cooking at all, not work as much as I probably should, and definitely not take a shower or do any cleaning. I'll rest and I'll try to be gentle with myself, instead of berating myself for being "lazy." I fail at that last part, more often than not.

The perhaps counterintuitive regular exercise thing helps a tiny bit, but I'm not always good at following through on this. Back in the day, I used to feel energized by a good workout, but those days are long gone. Getting a little bit of regular activity does help overall with my energy levels, I think, but I never feel that burst of energy after a workout like I used to. I miss that feeling. Yoga and meditation help a little as well, though maybe they help more with how I deal with the fatigue on a mental/emotional level than helping with the fatigue itself.

I don't know what this is (is this a Pokemon thing?), but this gif sums up lassitude well:

via GIPHY

Oh, my tail's on fire? Okay. I just can't right now.

This Week in my Life: Week 14 of 2016

The view from here:

Got a sweet package from my friend Gwen this week.
It sure gave me a Riesen to smile! ;-)

a tasty mixed berry shortcake

#wokeuplikethis

Overall, this week was meh - still not feeling great overall. Still waiting on one last insurance-related hurdle before I can start Tysabri again. Also, another not so great week on the reading front...

What I read this week:

Furiously Happy: A Funny Book About Horrible Things Of note on the MS-front is that a few pages of this book are devoted to the spoon theory. The book is mostly about the author's experiences with a handful of mental illnesses, but she also has RA, and discusses the spoon theory and how it relates to both her RA and depression. There is some good discussion of the whole spoon thing (If you do x & y, even when x & y are basic kinds of things like showering and getting dressed, there's no way you can do z, and so on) and how we all too often are overly self-critical of our inability to do z. Yup.

On Spoons

On that both wonderful and terrible timesuck that is Facebook, I saw this image posted by WEGO Health:

The best part was reading and agreeing with several of the people who commented. This infographic does explain the spoon theory somewhat, but I and many others seem to question how accurate it is for those of us with chronic illness. After all, you could consider the spoon theory to apply to all humans. Some humans just have a lot more spoons! In my opinion, this infographic and the person's day it represents could very well be that of a normal, healthy person! All of the tasks of daily living take something out of a person, and most people can only do so much in a given day. This looks like a pretty full day to me! For myself and many others with chronic illness, this day would not be possible, at least not with "borrowing" several spoons from the next days. The challenge of doling out spoons is that there is NEVER enough to do everything you want to do, and often not even enough to do what you need to do! It is always a matter of deciding between different items. Go shopping and cook dinner? More like one or the other! And assuming work is a full day, only four spoons seems unlikely, even for a relatively "easy" job.

Another point several commenters brought up is showering. They laughed at the idea that taking a shower would only count for one spoon. I agree! Showering can be one of the more depleting, exhausting acts for me. Unfortunately for those around me, this sometimes means I don't do it as often as I probably should! I choose to allocate my spoons elsewhere.

Where my spoons go is always a choice, and often a painful one. I don't always make the right choice, and I often regret my choices. Such is life a spoonie! If only spoons grew on trees...