Saturday, August 20, 2016

This Week in My Life: Week 33 of 2016

The view from here:

an evening walk around the lake with a lovely moon reflection on the water

this would be prettier if the water weren't so scummy

tasty pizza with my friend Gwen!

followed by ice cream, documented with my obviously brilliant and professional selfie skills

a dramatic sky behind a cool, historic building

I love sweet corn season!

What I made this week:

quite a few origami elephants, to submit as part of a world record attempt
to bring awareness to the number of elephants killed each year for ivory

lemon garlic beans on the grill!
foil packets on the grill with all veggies 100% local and wonderful

What I read this week:

The Body Keeps the Score by Bessel van der Kolk - a very interesting book. Some sorta/kinda MS connections, in that there is a fair amount of discussion of the science connecting various kinds of trauma to autoimmune disease (the very concept of which pisses me off, but in this case, the science was pretty compelling but also not quite strong enough to really mean anything concrete at this point).

This NMSS article on a study showing that a plant-based, low-fat, meat-free diet improves MS fatigue - so this means my fatigue would be even worse if I didn't already eat this way?!?! 

Thursday, August 18, 2016

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.


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

Saturday, August 13, 2016

This Week in My Life: Week 32 of 2016

This is technically my second post of the day, as the post I wrote yesterday didn't get posted until after midnight. I wrote about trouble walking as part of my MS Symptoms Top 10 Countdown series.

This week included a fast weekend trip to hang with my niece to pack in a little fun before it's back to school time for her. As always, it was a blast but it's left me feeling pretty wiped out. I haven't been very productive or all that functional this week. It's only fitting that the post I'm going to write this week for the Symptom Countdown series is going to be fatigue. MS fatigue is a beast, and it's way more than just feeling tired.

The view from here:

For this little fashionista, thrift store shopping means trying things on and striking a pose.

My niece is into so many things that I was NOT at all into at her age - fashion, dolls, etc. I've learned to enjoy doing these kinds of things with her, but it was a real treat to do something with her on this trip that I was all about at her age: playing basketball. I was shooting hoops constantly at her age. It was too hot out to play for long, but it was a definite highlight of the weekend for me.

Pretty impressed I made this shot on the first try
while only looking at my phone to try to get the picture.

She shoots...she scores!

Two girls and a pig in their swimsuits, ready to cool off in the pool.

She loved giving me piggy back rides and carrying me around.

Weirdly woke up before her one morning. Loved the snuggles and watching her peacefully doze.

Selfie with Izzy and Holly, all vacantly staring in our own directions.


Roasting marshmallows for smores!


A small sampling of the 175 pictures of clouds I took in the last week or so.

I used to be a NYT crossword kind of girl, but these days the People magazine
one is more up my alley. I know too much about pop culture. Powered through four
of these on the road trip, and then did the last one during my Tysabri infusion.
The Olympics made my infusion a little more fun this month.
Having spent time in Brazil and having quite a few Brazilian friends,
it's been interesting to watch the situation in Rio as well as all the athletics.

A few sort of productive things I did this week:

Replaced a headlight, only to realize that the bulb was never the issue. The wire connecting to the bulb was
barely holding together. And then it snapped and the little metal connector piece fell somewhere
in the mess under the hood. I spent almost 45 minutes trying to A. find it and then B. actually reach
and retrieve it. Somehow I eventually got it, re-stripped the wire and attached it with electrical tape
and now the light is working. Who knows if my fix will actually last. I really have no business doing this kind of thing.

I "fixed" these awesome dollar store socks. I mean, was this not OBVIOUS?

My MS Symptoms Top 10 Countdown - #8 Trouble Walking

Today's symptom may be one of the ones most people might think of when they think of MS. I know that when I was diagnosed and didn't really know anything about the disease, my major thought was that MS = wheelchair. I now know that that's not necessarily true, though difficulty walking is a major symptom for many people. Trouble walking isn't really a major part of my daily life these days, but it was a major symptom for me for the first year and an occasional issue in the last nine years.

What I mean when I say I've had trouble walking:
  • having to concentrate intensely on every single step
  • major foot drop issues
  • looking like I'm drunk
  • very slow walking speed
  • falling down (this was the symptom that finally made me go to the doctor)
  • unable to walk without some kind of assistance (holding onto something/someone)
  • tripping regularly (mostly because of foot drop)
  • sometimes physically having to lift one leg to go up a step
  • jogging/running = impossible
  • wearing heels = a terrible idea (good thing I don't care about this one!)
The first time I really knew for sure that something was wrong (the 2+ months of a totally numb leg wasn't enough for me) was when I was walking along and suddenly I was on the ground. That prompted the first trip to the doctor, a total disaster where I was told I had probably tripped over my own feet and that I was clearly depressed and unhappy. Shortly after this, I started to notice that walking was just weird. It was hard to explain why, or what exactly was going on. I just knew that I had to think to take steps, and that even with conscious thought, it just wasn't working quite right. But I could walk, and I don't even think anyone would have seen anything weird in my walking at that point.

Then a week or so later, my mom and I were moving my sister into her new dorm/apartment. The weird walking thing was a problem most of the day, but still just at that something-is-not-right-but-I'm-still-walking-basically-well-enough level, though I think the issue was probably visible to others at this point. On the 2 block walk back to the parking garage from my sister's place, though, it progressively got SO much worse. My walking speed got slower and s l o w e r and s  l  o  w  e  r. My right foot started to drag and have trouble fully lifting off the ground. Whatever was going on was very clearly a major problem. That walk was like being hit over the head with the overwhelming knowledge that something was really truly very wrong, and that this was serious. My mom and I both sat in the car in that parking garage and cried.

After that first experience, trouble walking was a big part of every single of my first 10 or so relapses. Walking problems haven't fully returned with a vengeance since then, but when I am overtired or overheated, some of these things do pop up. I generally don't have trouble walking most days, but I still can't run. As my old neuro said, running is very different from walking in your brain. My brain just can't process quickly enough. When I've occasionally tried (not going on a jog or something, just in playing with my niece) there's always a moment where there's a "catch" in the process and it's a scary moment where a fall feels imminent.

So, that's my story on walking problems with MS. Stay tuned for more symptom stories.

[my falls were never this awesome.]

Thursday, August 4, 2016

This Week in My Life: Week 31 of 2016

This post is going up a few days early because I'm visiting my niece again this weekend. Yay! It's going to be a surprise for her. Can't wait to see her reaction!

The view from here:

pretty garden area

love the purple backdrop for the bright orange and yellow flowers

playing horn with good friends! fun times.

sunflowers + clouds

Saturday, July 30, 2016

This Week in My Life: Week 30 of 2016

Wow, I've kept this weekly post thing up for 30 weeks now. I've smoked last year with only 4 posts in all of 2015, and I'm on track to beat my record of 59 posts in a year from 2011. Thanks to those of you following along. The 2nd in my series of posts on my MS symptoms went up yesterday.

The view from here:

worst ever experience at the Walgreens pharmacy drive-through this week.
45 minutes of waiting...getting to the window only to be told to drive around to the back of the line while they finished getting my med ready (even though their website told me it was already ready!), only to do so and just be told the same thing, and then finally one time it's "ready" but they ask did I just want the 15? (for my 90ct script) to which I said huh? no. and they were like, oh ok, so you want the entire prescription to be filled? our bad. just drive around to the back of the line and it'll be ready when you come back through. GRRR. it appeared to be new employees that day, but still. WOW.

Blue skies and raindrops.

This was a really great cloud day.

Sunflower season.

Great clouds and farmland. 

What I made this week:

Spicy Asian flavors Bok Choy on the grill

Bruschetta with basil from my little herb garden.

What I read this week:

Another winner from BuzzFeed: 15 Words That Mean Something Totally Different When You Have A Chronic Illness

Woman With MS Makes It Her Mission To Run A Marathon On Every Continent I was seeing this story shared a lot online, and at first I was kind of annoyed. I feel like stories of people doing incredible things that many/most people with MS could never do can be inspiring, but it can also be damaging to MS visibility and awareness because people will think/assume that MS must not be that bad if people can run marathons and climb Everest and so on. They will assume that all people with MS must be the happy/healthy/athletic people we see in the magazine ads for MS drugs. And for all of us with a very different picture of what MS looks like and for whom it limits at least some of what we can do, it just makes it feel more isolating. However, when I actually read this article (rather than just feeling slightly annoyed and ignoring it whenever I saw it pop up), it was totally inspiring specifically because this woman really does have MS problems that affect her and her ability to run, but she's doing it anyway.

I really enjoyed this post from Damsel in a Dress (not an MS blog, but the author has Lupus and was told it was probably MS before finally being diagnosed...and it's a very relatable blog for all chronic illnesses): HOW TO USE THE INTERNET WHEN YOUR FRIEND HAS A CHRONIC ILLNESS

Friday, July 29, 2016

My MS Symptoms Top 10 Countdown - #9 Diplopia

Last week I wrote extensively about my MS-related bathroom troubles, but today will be a shorter post with no chance of TMI. 

Vision problems are probably one of the most common MS symptoms, and they're often the first symptoms people experience. Not so for me. In fact, I've never *knock on wood* experienced Optic Neuritis, the eye problem most common to MS. The only vision-related MS symptom I've experienced is diplopia, a fun name that means double vision.

Kind of what the world looks like with diplopia.
The diplopia popped up during that first awful year where all kinds of symptoms came to the party of my life, uninvited, and kept coming back even after I'd shown them the door. Like pretty much every symptom I've experienced in these past 10 years, my first reaction to a new symptom is to question whether it's really happening, or rather I ask myself if it hasn't really always been that way. I know that sounds ridiculous, but that's how I tend to roll.

Double vision is not painful, but it is incredibly annoying and it can be very dangerous. I'm sorry to admit that I did drive a few times while I was experiencing double vision. Just a few short trips around town, and I pretty much kept one eye shut which eliminates the seeing double. While a passenger in a car on the interstate, it looked like there was constantly a new off or on ramp, a diagonal lane always right there. It was very discombobulating and it could be disastrous to drive like that. Don't be like me and drive when seeing double!

I read like most people breathe, and reading was obviously impacted by diplopia. Again, shutting one eye fixed it, but that puts more strain on the one eye and wasn't sustainable for long periods. Now that I think of it, I should have just gone full pirate and gotten an eye patch to wear during this period.

The diplopia went away along with other symptoms when the steroids kicked in. It does sometimes reappear a bit when I am extremely tired (as so many of my MS symptoms do), like when staying up late reading for too long. When every line of text has a double floating above it, I know I have to shut the book. 

Of all of the more than 15 MS symptoms I've experienced, diplopia was my "favorite." It was annoying, but compared to all the other symptoms, this one had the least damaging impact on my life.