This Week in my Life: Week 34 of 2016

I'm currently in Michigan (I'm smitten with the mitten) visiting my friend Heather. So it will be another tiring week overall, but like with my niece time, it's worth borrowing spoons from next week's supply. Heather is a friend who takes me on adventures, but she is also one of the rare people who really gets the spoon thing (and my bathroom routine haha) so it will be action-packed but also peppered with rest. This will be a short post, but I'll share just a few pictures of the adventures so far.

The view from here:

so pretty!

my happy place

so fun!
(she often does the majority of the paddling to make sure I don't overdo it. so I take lots of pictures!)

pretty clouds, pretty water, and that's me floating way up there!
parasailing was not in the plans, but our other plans (sailing at sunset) were canceled
and we came across the parasailing thing and tried it. I was a little scared, but it
was surprisingly PEACEFUL and not even a little bit scary. I LOVED IT!

post-parasailing on the boat. a beautiful day!

Mackinac Bridge!

HORNS!

More adventures to come in the coming days, so there will be more vacation fun pictures next week! And hopefully also another post in the symptom series!

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?!?! 

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 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.

Rollerblading!

Roasting marshmallows for smores!

Yum!

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.
#ADULTING

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.]

via GIPHY

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