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 17 of 2016

Whew, it feels like it's only been a few days since I posted for last week. I guess that's what a short trip packed with fun and MS fatigue and exhausting recovery does! In addition to the incredible fatigue issues, I've also had some other stellar MS experiences this week. Bladder problems are always fun, aren't they? It seems mostly better now (not 100%, but around 80% at least), but a few days before the trip, all during the trip, and a few days after the trip I had some major problems with fully emptying my bladder. To put it differently (in the MS-world parlance), I had some major frequency issues. To put it even more clearly, I had to pee ALL OF THE TIME. I'd go to the bathroom and pretty much immediately feel like I needed to go again. This certainly wasn't a new symptom for me.  It was a major part of that terrible first year of constant relapse, and it has visited now and again ever since, but it definitely hasn't been this bad in a very long time. A 6-hour drive is lots of fun when you have to pee all the time. Luckily my driving buddy (my mom) also needed to stop more frequently than usual because her post-surgery knee/leg didn't like being in a car that long either. Enough about pee, let's move on to the pictures and things.

The view from here: 

The trip to hang out with my niece on her birthday weekend was a blast. Way too short, as always, but it's always so soul-enriching to spend time with this awesome girl.

There were a lot of selfies this weekend.

She's the best.

Just two ladies casually strolling through the local outlet mall.
We didn't shop at either the gold toe sock place or the motherhood store.

We did, however, shop at some of her favorite stores, Justice and Claires.
These would so not have been my favorite stores at her age.
But as an aunt, I'm enjoying living all the girly things through her.

Another example of girly things: dolls.
Hanging with Izzy as she enjoys a cookie and some water.

More girly things - my SIL painted my nails. (Toes only, I don't do painted fingernails.)
Coral topped with sparkly silver, natch.

Went to Sonic. I got out of the car to photograph a tree, which gave me the opportunity
to grab this photo. (Or about 15 variations on this photo, if I'm being honest.)

The Sonic tree.

Kylie made a special little snack to tide us over until dinner time.
She's the coolest.

We were there a few days before her first piano recital, so we got a private preview.
She rocked it.

She also jammed out quite a bit on my horn. #heartmelted
Girl's got some fabulous natural brass-playing chops.

Phew, didn't miss the flowering of the bush.
Apparently there was no sunshine while we were gone.
So it's progressed a little bit, but still no full-on flower explosion.
Sorry this picture isn't super clear. Impossible with how windy it was.

What I read this week:

Other than quite a bit of one of the Dork Diaries books with Kylie, not a whole lot of reading of books this week.

But I am digging a new-to-me MS blog: Tripping on Air. She recently expressed some of what I was talking about recently in my complicated feelings about all the marketing for the MS drugs:

"There is considerable controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageable. They promise good health with a simple pill. These images are well received by many patients for whom this ideal is even remotely possible and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like...

...At the other end of the controversy are those that are angry at the current 'normal life' depiction of MS. Who feel outraged that the dancing, rock climbing, happy ice cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why MS’ers are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated."

There is plenty more to this post and the whole thing is worth a read. As is the rest of her blog. I especially enjoyed these posts: Honey, I Peed the Bed, Thanks, MS, People Who Mean Well (and Their Miracle Cures, and But You Look So Good! She's a good writer, she's funny, and she's relatable (spell check says that's not a word, really? that's a word, right? well even if it's not, you know what I mean). If that's your thing, check her out. Heads up, though, she does swear sometimes if that's an issue for you.

On Exercise

I was a very athletic kid. Most sports came very naturally to me and I loved them all. I was always outside shooting hoops or riding bike or playing something or the other with neighborhood kids. I played basketball at school through junior high and stopped playing only because I decided to focus more on music. However, I continued to be fairly active. In college, I could often be found playing frisbee. I also got into yoga and weight lifting.

My current, post-MS activity and exercise levels are very much lacking. A few years ago I joined a gym and had a very dedicated schedule. I worked out several times a week and pretty intensely. Then I had a neuro appointment, where I complained that my pain had been consistently really bad for quite a while. It took about two seconds for the doc to figure out why - the exercise. It's a troubling catch 22. Exercise is good for overall health and helps certain MS-related issues like energy levels and constipation. BUT for those of us with the delight of nerve pain, it very much exacerbates the problem. Also, exercising too intensely can cause overheating issues which can make all symptoms worse AND can make fatigue significantly worse. After that appointment, I pretty much stopped working out totally.

I used to LOVE that post-workout feeling after a really hard, intense, vigorous workout. It was hard work and I was worn out, but somehow also totally energized and felt incredible. Endorphins are awesome. This no longer happens, ever. If I work out at that intense, vigorous level that used to leave me feeling amazing, strong, and invincible, I now feel completely and utterly defeated, a limp noodle unable to even imagine doing any physical activity ever again. PLUS I'm in overwhelming, agonizing pain.

So, I'm in a tough place. I want to and intend to work out at a moderate level regularly, but I hardly ever do. I know that I need the various positive effects of the exercise BUT I am so terrified of making my pain worse. It's already bad enough too often. And I would love to experience an energy boost from working out, but I'm afraid of not finding the magic spot where I get this boost and instead get the total system shutdown effect.

in the pool with my niece and our hippo friend

My doc recommended getting in the pool as the very best thing I could do. Too bad I'm not a swimmer. However, I do currently live at a place with a pool and I have used it and find I can get a decent workout without exacerbating my problems too much. It's still not my natural habitat, though. I need to make it a consistent, regular habit to get in the pool. I also need to consistently lift weights and do yoga. A friend and I just started an accountability program where we check in with each other once a week about our progress in certain areas. For me, it's working out. My current weekly goal is lifting weights at least once a week and some form of cardio at least twice a week. This first week I only swam once, so there is definite room for improvement.

Any tips on how to make exercise a positive part of your life?

All I Ever Do

...is sleep.

This according to my 5-years-old-and-sleep-is-so-boring niece.

My mom and I hang out with her to get our princess movie and barbie fix one day a week, and she knows that I tend to "rest" through a portion of that day. Well, yesterday was one of those days when my MS just doesn't feel like playing nice and the fatigue just wouldn't stop. I ended up taking two naps yesterday, a most unbelievable concept for her young mind to grasp. I can only imagine her distress if she were to find out that after this day of mostly just sleeping I went home and slept for sixteen hours straight!

I know that one day a long way down the line, she'll come to understand that sleep is, in fact, an awesome use of time, but I hope and pray that she never understands MS fatigue.