On Being Clumsy

Something happened the other day that I'm struggling to let go of. In many ways, it's not a very big deal and in many ways, it's funny. But, it's also bumming me out. I'll get to the story in a minute. I'm bummed out mostly because it made me notice for the first time in a while just how clumsy I am these days. By clumsy, I mostly mean that I drop things (my phone, meds, keys, glasses and dishes, etc.) A LOT, and I bump into things (walls, doorways, chairs, etc.) A LOT. Like multiple times a day, every day. This is another thing that has just slowly and steadily gotten worse over the years that I should have mentioned here when I talked about the "little things" that have been progressing.

For the most part, this isn't a big deal. Yes, I've broken quite a few dishes and glasses over the past few years. Yes, I've gotten a few bruises. Yes, I have shattered many a phone screen, and learned that the "life-proof" Otterbox cases are not up to the rigors of my life, apparently. But for the most part, none of this is a big deal. Stuff is replaceable and bruises heal. As of now, no serious injuries or massive expenses have come as a result of my clumsiness. And I know that everyone drops stuff sometimes and everyone bumps into things sometimes. And it's not a big deal.

I asked my mom yesterday, just making sure, "have I always been clumsy?" She assured me that I was not a clumsy person before, which I knew or thought I did. But I am clumsy now, without question. The rate of this stuff happening is just exponentially bigger. And that bums me out. Even though it's not really a big deal each little time I am "clumsy." The frequency with which these little times happen is a big deal. And it is definitely a big deal to know that this rate of clumsiness may well get worse, even a lot worse, over time.

First, the backstory - as you probably know, I play the horn. This is a brass instrument with a gaggle of tubes that you can remove to empty the instrument of condensation. It's colloquially referred to as "spit" but this isn't the time or place to explain to you why that's inaccurate. ;-) It's something I have done literally tens of thousands of times. It's something I have to do, dozens of times, every single time I play the instrument.

Now, the story. I was playing a symphony concert last weekend. Before the concert, the orchestra was warming up onstage. I played some notes and then, as I do before the start of any concert, started emptying out several of my slides. I took out a slide and then somehow, I didn't just drop it, but I sent it flying. It bounced off the riser I was sitting on and landed down on the ground in between my riser and the one in front of me. I was afraid it had gone under the riser and would be impossible to reach. My colleague/friend sitting next to me quickly got down and retrieved it for me. (Thanks, Denise!) At this point, it was just a fluke, a funny thing that could happen to anyone. I laughed about it and continuing emptying my horn. A few slides later, it happened again. This time, I sent it flying maybe 12 feet. It landed almost offstage. Again, this was so absurd that it was funny. I shared a laugh with the horn section. And while I was laughing genuinely, I was also somewhat mortified and upset.

I cannot tell you how glad I am that this happened before the concert started and not during the concert! I don't know what I would have done if this happened mid-performance. You better believe that every time I emptied my horn during the concert I did it slowly and with a death grip on the slide. Emptying my horn is something I typically do without thinking. No longer! When I play now (in public, anyway), I'll be paying a lot more attention and using a forceful grip and trying to make sure this doesn't happen again.

I literally have no idea how this actually happened. I don't think I had any numbness or a tremor in that hand that day to explain this. Then again, sometimes I'm not entirely consciously aware of symptoms like these. Dropping something is one thing, but unintentionally throwing something?

This slide-throwing story also hit me because of another absurd story from about a month ago. I was sitting on the couch using my laptop when I needed to get up to do something. In moving my laptop from my lap to a footstool I set my laptop on when I'm not using it...in moving it a distance of less than one foot...I didn't just drop my laptop, but I somehow threw it into the air. It landed awkwardly on its side but it didn't break, luckily. When this happened, it was so absurd as to be funny. It was baffling as to how it possibly could have happened but it didn't really make me pause and reflect like this. But when taken with the horn story, yikes.

So, I'm a clumsy person now. I drop things, I bump into things, and now I apparently throw things. So far, I only throw really expensive stuff, though. Which is great.

Any other throw-stuff klutzes out there, MS-related or otherwise?

My MS Symptoms Top 10 Countdown - #3 Weakness

Yikes, it's been almost two months since my last symptom series post! It's been a busy and tiring stretch, but part of my delay is probably because 2 of the last 3 symptoms I'm planning to write about are doozies. But today, I'll get the last one that's easy to write about out of the way - weakness!

Weakness in MS does not mean that the muscles themselves are weak. (Although that can certainly happen as well, as MS can often lead to being less active and the muscles will become less well-conditioned as a result.) Rather, it's the muscles aren't getting the message to do their jobs because of damage to the nerve fibers.

Muscles in both the arms and legs have had some weakness issues for me. In my most recent relapse, the entire left side of my body was weak. It was endlessly fascinating to me to not even be able to hold my arm up in the air without it falling back down as captured in this video that I shared a while ago:

After time and steroids, the left side weakness is better. I can now lift a 5-lb weight again. And I can stand in the security line scanner airport pose without my arm dropping!

In the past, weakness has just meant that large muscle groups (especially my quads) would reach total exhaustion WAY sooner than they should have. Pre-MS Kayla could have comfortably biked for miles; post-MS Kayla's legs would completely give after only a handful of blocks. Activities like biking and climbing stairs were impacted. Walking was as well, but not nearly to the same degree of intensity. There have been some not-too-long-ago examples of weakness impacting walking ability more significantly, though. A 1-mile walk near my home that I take pretty regularly saw my speed going from maybe 3 mph at the beginning of the walk to maybe 0.25 mph by the halfway point, as every step felt like moving lead.

So there has been some pretty significant acute weakness for me in the past as well as some chronic weakness issues that continue.

My MS Symptoms Top 10 Countdown - #4 Cognitive Challenges

My brain has always been a huge part of my identity, as I suppose is the case for most people. My intellect and my wit have everything to do with how I see myself and I'm sure are a big part of how others see me. Because of this, I've always been particularly terrified of the potential cognitive consequences of MS. And I've been particularly devastated by the realities.

Cognitive issues I've experienced:

• Brain Fog: Brain fog is a fuzziness, a slowdown of thinking speed, and having trouble concentrating. Brain fog is a perfectly apt descriptor. It's like a heavy fog that limits what you can see.  A favorite fictional character with MS calls it brain mud instead of brain fog, which is also accurate. It's messy and hard to walk through. Sometimes I have trouble understanding simple directions. I often have trouble understanding what someone is saying or what something means. Much of my thinking process is just significantly slower. [Some of my brain fog is likely exacerbated by drugs I take for nerve pain. More on that in a later post in this series.]
• Memory Issues: Some who know me might argue that my memory has never been stellar, at least in some areas. It has definitely been made MUCH worse with MS, though. I've had many big lesions in the areas of the brain most associated with memory. Memory issues are a combination of difficulties - trouble acquiring new info, trouble retaining info, and trouble retrieving the info.
• Word Retrieval: As a lover of words and as a writer, this one is especially awful. Sometimes it is also hilarious. We all experience the inability to think of a word from time to time, but the rate of this happening for me has skyrocketed. Sometimes it's for more obscure words, but it's often for incredibly common words. I often try to act out the word to have someone help me find the word, but this is often hilariously unsuccessful. Or I'll just describe the word, like calling a match a fire stick. Sometimes I use the wrong word, and I'm often not even aware of it unless someone gives me a weird look or asks me about it. This really worries me, though - how often have I used a bizarre, completely incorrect word and whoever I'm talking to doesn't say anything or give it away with a look? Especially in professional contexts, this thought horrifies me. A favorite example my family and I still laugh about is when I replaced the word slippers with muffins. As in, "have you seen my muffins? they were just right there on the floor!" There are many examples like this. Or sometimes I make up a word, without even realizing that the word I'm saying is not a real word.
• Decision Fatigue: Everyone who knows me will tell you that I've never been fond of making decisions. I will avoid making decisions as much as possible, especially on things like where or what to eat. That said, making decisions has gotten much harder thanks to MS. Decision fatigue is something that happens to everyone, but for many of us with MS, it is compounded. This is related to MS fatigue in general. It is significantly worse later in the day, or on days where the fatigue is just at its worst. Minor decisions are difficult, but making huge, highly consquential decisions - like what MS drug to switch to - can be completely overwhelming. Decision making is the only area where I've used the "MS card" with friends and family, but so far it hasn't really worked. Dear loved ones, when I struggle to make decisions or when I ask you to please just make the decision, understand that my difficulty with decision making is a real symptom of my MS and that making decisions (even over simple things like where or what to eat) can really stress me out. It's not that I just don't want to make the decision, it's that it is actually nearly impossible to do so. It feels like my brain is paralyzed, like I'm stuck and don't know how to move.

My MS-related cognitive challenges have affected my life in a few ways. It has really challenged how I think of myself, and how much I place my intellect at the core of my identity. I've had to wrestle with the question of how I can or should see myself when that is threatened. It makes me feel bad about myself. It was also a big part of why I left a job that I mostly loved. Teaching applied music lessons (one-on-one) as well as teaching classes that involved lecturing to large groups was something I loved, but it was something that was getting harder to do, for a lot of reasons. I often struggled to find the right words and would sometimes even forget what I was saying in the middle of a sentence. This was embarrassing and upsetting for me, and it was probably sometimes frustrating for my students. I still teach university classes online, which is a medium that is more forgiving since it gives me more time to find my words and make sure I'm making sense. 

In many ways, my cognitive challenges are only mild. Some days are worse than others. A big part of why the deficits I have suffered have been so upsetting is the fear they spark about what could be. I'm utterly terrified of losing more of what makes me me. It's already bad enough.

My MS Symptoms Top 10 Countdown - #5 Pruritis

In my last post about paresthesias, I mentioned itching as one of these strange/abnormal sensations MS has bestowed upon me. I also said that this itching was the worst symptom of all the symptoms I've experienced. You probably think I was being hyperbolic. After all, itching  may be annoying but can it really be that bad? You've already heard that I've peed my pants and have been unable to walk without assistance. You haven't yet heard me talk about four other awful symptoms. And itching is the worst?! Yes.

(There is another symptom that I'm saving for last in this countdown because it also qualifies as THE WORST, even though I know I can't say two very different things are both equally the worst. Except yes I can because this is my blog and I can do whatever I want. Itching is THE WORST in terms of the actual experience of the symptom when it's happening and the other symptom is THE WORST primarily because of its unending duration.)

So when I say I've experienced itching from MS, what exactly do I mean? This is one of the symptoms that is so very hard to describe to someone who has not experienced it. You know the feeling when you have a bug bite or a rash or something like that? Itchy, but you maybe get at least a temporary hit of relief when you scratch or apply an anti-itch cream, yes? This is not like that. How it's different:

• My MS itching - or pruritis, to use another science-y word - always covers a much larger surface area than a bug bite. Typically it's been the majority of a limb. Most of an arm or leg. Once, it's even occurred on most of an arm and most of a leg at the same time. That's a lot of surface area.
• It's about 1,000 times as intense as a bug bite itch. You can literally think of nothing else.
• Scratching doesn't even give a temporary hit of relief. Nada. Not that that stops me from trying. The itch has nothing whatsoever to do with the surface of my skin, like it does with a bite or a rash or sunburn or being tickled.
• It generally lasts for 30 minutes to an hour or sometimes even longer, at that same level of crazy high intensity.

This experience literally makes me feel like I am losing my mind. When it happens, I always get to a point where I feel like I truly cannot stand it for one more minute. I'm at the edge of a line where I feel like I need to go to the E.R. and ask them to knock me out or something. And I think I've mentioned once or twice on here how I feel about going to the doctor at all, right? So for me to even have that thought means this had to have been insanely bad.

How often have I experienced this? Probably at least 50 times. It happened a lot during my first year and has happened all too often in the years since. It was often the first warning sign of a big, bad relapse coming at me. The itch of doom came, and 24 hours later my legs had trouble with the walking thing. In recent years, though, it has sometimes happened (as recently as 10 days ago) on its own and not necessarily as part of a big relapse.

This was another symptom early on that I had all kinds of funny rationalizing about. It first came in my right hand and forearm, and it seemed to often happen while I was playing my horn (a brass instrument where you stick your right hand into the bell) so I was convinced I had suddenly developed a metal allergy. Naturally, I did a lot of research and talked to other horn players who I knew had this kind of allergy. The fact that their experience of it sounded nothing like mine did not deter from being convinced that this was what was going on.

How do I act when this is going on? I kind of lose my mind. I do scratch, maniacally, even though it is not helping and I know it won't. In the early days, I would turn the faucet on way too hot and hold my arm under it. Knowing the effects of heat on my MS, I now know how very dumb this one was, and I don't do it anymore. Weirdly, though, it kind of worked in that it tore my mind away temporarily at least from its frantic scream about the itch. Distraction works, but only in this kind of extreme way and not so much in a watch-this-cute-puppy-video way. [Sudden lightbulb idea - next time, I should try ice packs!] Now, I sometimes violently whack my arm against furniture even though I know this is probably not helpful. I lay on top of it with all of my weight. This last one seems to be one of the more helpful coping methods, probably because, like with the hot water, it distracts and confuses my brain. It only really works when the itch is in my arm, though, not so much when the itch is in my leg. Mostly, though, I just wait not at all patiently for it to pass. This usually occurs within an hour, but I've had a few 2-hour doozies. 

via GIPHY

I just asked my mom what I'm like when this is going on, as she has seen it many times now. She says that I get a particular look on my face, that it drives me crazy, and it's clearly all I can think about it. That last part is so dead on. There is literally nothing else I can think about when this is happening. The few times where it has happened in public or around people other than those I know I can go "crazy" around, it's been a war inside myself to keep it together until I can break away.

So yes, itching is THE WORST of my MS symptoms. I would not wish it on my worst enemy.

My MS Symptoms Top 10 Countdown - #6 All the Paresthesias

If you're not a person with some MS experience and/or you're not a medical professional, you might not know what the term paresthesias even means. I didn't either, but I now know all about them! So sit back, relax, and let me teach all about paresthesias, from the lens of my personal experience.

What is a paresthesia?

Put simply, it's a weird feeling. An abnormal sensation. The most common paresthesias are numbness and a "pins and needles" tingling kind of feeling.


The paresthesias I've experienced:

pic from Des Burns on flickr

• Numbness. I'm mentioned in passing in previous symptom posts that my first real symptom was numbness. My right foot and pretty much my entire right leg were numb for months. Sometimes it was just a little numb, sometimes it was insanely numb. Think sitting in an ice bath or getting all kinds of novocaine and you'll kind of get the picture. This has returned a handful of times over the years, though it was present more often than not during my first year with MS. Even though it was summer, I wasn't shaving my legs much at the time because shaving a totally numb body part is weird and hard and potentially dangerous. When I finally gave in and went to the doctor, I knew they were going to be examining my legs, so naturally, I had to shave. Ha! I probably shouldn't have, but luckily I didn't severely cut myself. I've experienced numbness in both feet, both legs, both hands, one arm, and over most of my face. Numbness is sometimes just annoying, and it is sometimes debilitating and makes using your body a challenge. 
• Tingling. This came and went along with the numbness. And it has continued to come and go throughout this last decade.

  

  pic from Ias - Initially on flickr

  Sometimes it's a huge area that is tingling. Sometimes, it's one tiny little area. Like the tip of my nose. In certain parts of my body, it feels less like a my-foot-fell-asleep-pins-and-needles feeling and more like a part of my body is like a cell phone set to vibrate and it's ringing. You know how it feels when a cell phone vibrates and it's touching  part of your body? It's kind of like that but often isolated to weird little (like one square centimeter) spots. It can also cover a large area all at once. Tingling is mostly just annoying but at an insanely high level of annoyance. When the tip of your nose is "buzzing" a couple of times a minute off and on all day long (but more on than off), it's pretty impossible to concentrate on anything else at all. For me, the tingling sensation has run the gamut from pins-and-needles to burning to the buzzing vibration sensation, and it's happened in places all over my body.
• Temperature Confusion. There's probably an official science-y word for this, but I don't know what it is. This is when hot feels like cold and/or cold feels like hot. This was happening early on when the leg was super numb. Showering was confusing because part of my body knew the temp was normal (warm-hot), but part of my body was angrily convinced it was actually freezing cold. But at the time, I wasn't even really cognitively aware of this. I just knew something felt weird and wrong and off. At the first neurologist appointment (after the first horrible GP appointments), the doctor put a metal tool of some kind under hot water from the tap for a while and then pressed it against my hand where I confirmed that it was indeed hot. Then he pressed it on my leg or foot, and suddenly it was ice cold! It suddenly all made sense, and that's when I learned this was actually a symptom and a real thing. In a sort of related (but not really) way, sometimes numbness feels like coldness and tingling/burning feels like heat. All of these symptoms can be hard to put into words that really describe what they feel like.
• Lhermitte’s Sign. I don't know if this really belongs in the paresthesia category, but I'm putting it here. This is often described as a kind of nerve pain, but in no way have I ever found it to be painful. In fact, I often enjoy the sensation. This is when you lower your chin down towards your chest and you feel an electric shock-like sensation running all the way down your spine. It's usually described as an electric shock, but for me, it's more of a buzz similar to that cell phone vibration I mentioned above as a kind of tingle. For me, it is not at all painful. This is something that really weirded me out early on, though. I kept feeling this weird buzz, and I kept searching for my phone since I assumed that's what I was feeling, but it was never there. I hadn't put two and two together to realize that it happened whenever I moved my head in a certain way (bending it down/forward even slightly), but again in that first appointment, the doctor told me to bring my chin down towards my chest and aha lightbulb moment! Lhermitte's has visited me during pretty much every relapse, but also always pops up when I am particularly tired or exhausted or worn out. It's kind of an early warning system that I need to get more sleep or take it easy.
• Itching. Itching? Yes, itching! Want to know more? Well, this is one is such a huge one for me (ABSOLUTE WORST SYMPTOM OF ALL THE HORRIBLE SYMPTOMS I AM NOT KIDDING) so it's getting its own spot in the countdown because I can't limit my feelings about this one to one hearty paragraph on this list. 

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.

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. 

My MS Symptoms Top 10 Countdown - #10 Bowel + Bladder Fun

This is the first post in a series of 10 posts about the symptoms I've experienced during my 10 years with MS. This is me pulling back the curtain to show you what MS looks like for one particular person with MS. This disease can be drastically different from person to person, but this is what it's like for me.

I'm not going to go in any particular order in this countdown, but I figured I might as well start with the sexiest of all symptoms: bowel and bladder problems. I'll try not to get too graphic here. To quote Tripping on Air: "There is a fine line between TMI and NEI (not enough information). It’s hard to talk about this stuff, so we don’t, and then it’s lonelier and scarier than it needs to be."

My first definite MS symptom was constipation. Like, pretty major constipation. I have for most of my life eaten a very healthy, high fiber, mostly vegetarian diet. As a result, I'd usually been fairly regular. But then, I wasn't. It was really bad, for quite a stretch of time. I was crabby and annoyed for weeks. It was the first thing in my mind when I woke up each morning, and it was on my mind constantly throughout the day. I was miserable. Fiber, laxatives, and the like didn't really do much at all. If anything, they made it worse. I was very close to going to the doctor about the constipation. If you know me, you know that it would have to be extremely bad for me to even consider going to the doctor, especially for something so personal/awkward/uncomfortable to talk about. Luckily, other symptoms joined the party so when I finally did go to the doctor, poop wasn't the first thing I talked about.

At my first awful appointment (after months of my right leg being numb, I fell down and couldn't get up...more on this in a future post in this series), the doctor did ask me about the state of my bowel and bladder. I admitted to the constipation. The doctor suggested I eat some fruit. She also suggested that my fall was probably due to tripping over my own feet, that I was very depressed and didn't want to be there (in grad school) and that I should take Tylenol.  So, super helpful overall! Despite how that entire appointment made me feel, though, it was the clue I needed. Why had she asked about my bowel/bladder when I was talking about numbness and falling? Ten minutes on Google (looking for what could be behind both numbness AND constipation) and I finally pretty much knew for sure what was going on: MS.

The next few years were challenging in all kinds of way, but constipation remained faithfully by my side. There were some periods where the situation got a little better, but it always came back. In fact, it got significantly worse when medications came into the mix. Years of trial and error to find the right drugs for my chronic nerve pain (more about that coming in a future post in this series) only made the bowel situation worse. A lot worse. The drugs I was trying and the ones I ultimately settled on all had constipation as a major side effect.

My worst memory of this time period was my 2nd Thanksgiving since the diagnosis. A day when you gather with loved ones and eat a lot of good food. Well, let's just say I was in a state of severe pain and discomfort and the idea of adding more food to my system sounded impossible and awful. I was beyond miserable.

I started to dream (or have nightmares, as the case may be) about pooping. All the time, like every night. It was on my mind more often than not when awake as well. Good times, all around. These dreams continued for years, and I still occasionally have them now.

During all this struggle, I learned that I had to develop a "bowel routine." This also took some trial and error, but having a routine became absolutely vital. It still is to this day, though perhaps not as important as it once was. For me, the only shot I have at going #2 is in the morning, after breakfast. Get up, drink something hot (especially coffee, but I'd usually drink coffee plus LOTS of tea), eat something, and sit. Being active, doing anything that couldn't be done while sitting would mean my chance for the day was blown. When my schedule required me to be up and out of the house in the morning, I would be pretty upset about it, because it meant I would be missing out on going to the bathroom. If I missed one day, my chances of being able to go the next day were very low as well, leading to an awful snowball effect. My life came to completely revolve around my bowel routine. I became almost militant about it. The exact steps in my routine have changed a bit over the years, as I've accidentally stumbled across something that works better, or realized that something wasn't really necessary. There are some more details to my bowel habits that I won't go into here, since I promised not be too graphic.

One of the worst things about my constipation saga has been that I often can't feel when I have to go, or when I will be able to go. I wasn't getting the physical clues that people normally get. I learned other ways of knowing when it was time. I've regained some of this awareness physically over the years, but it still isn't a fully functioning system or back to "normal" by any means.

When I took Aubagio for a few months earlier this year, I very much experienced the nausea/diarrhea side effects. It wasn't really true diarrhea, but it was a drastic change, and for the better. Going #2 super regularly (like even more than once a day) and with much more ease was a beautiful side effect. I stopped Aubagio because it realllllly wasn't working for me at all, and to be honest, I was a little sad about losing out on this side effect. Weirdly, though, it hasn't entirely gone away. It's definitely not quite what it was, but my bowels have never gone back to my awful baseline either. A bowel routine is still vital for me, and going first thing in the day is still pretty much my only shot most days, but post-Aubagio, it's generally been easier.

I'm pretty sure that's more than enough talk about poo. Moving right along to urination! Bladder troubles also joined me pretty early in my MS journey. After that first awful doctor's appointment where they pretty much said nothing was wrong but also were very clearly thinking it was maybe MS based on the questions they asked me, things very quickly nosedived. Lots of things got worse, and lots of new symptoms joined the party.

Suddenly I had to pee CONSTANTLY. I'd go to the bathroom, and not even five minutes later I would have to go again. And quickly. I was peeing constantly. Since I was also having trouble walking, hightailing it the bathroom as fast as possible all the time was a bit of a comedy of errors. Time passes, I get diagnosed, I go on steroids, symptoms mostly disappear but then come roaring back, and the cycle of steroids and relapses goes round and round. The bladder problems were usually part of the relapse package. My mom and I still laugh about the time we drove from Michigan to Minnesota to see an MS specialist and had to stop at literally every single rest stop or gas station the entire drive. It usually takes 12 hours, but I'm sure it took quite a bit longer with all those stops!

It wasn't just frequency and urgency, though. I also had major issues with hesitation. I would feel like I reallllly had to go, but then it wouldn't come out. I would just sit there trying, really intensely concentrating. It would usually eventually start in a weak little trickle and then stop and maybe start again. I eventually was taught the trick to gently palpate the bladder, and this would usually make it happen when combined with the intense concentration.

And then there was the not making it in time part. This was a symptom I found more horrifying than any other when I read about MS. It hasn't happened to me a lot, but it has happened. I mentioned urgency before, and this urgency is often very sudden. Like all of a sudden, you have to go, and it has to be NOW. I usually made it in time. There were a handful of times, though, where I didn't exactly. I didn't entirely pee my pants, but I did partially pee my pants on the way to the bathroom. Luckily, this was usually either in the privacy of my own home, or wasn't super obvious and I could leave and change right away.

Only one time have I completely, fully peed my pants. I had just had my oral exam for my Master's degree, a big deal experience. I stopped at home, before going out for lunch with my primary professor. While unlocking the door to my apartment, that out of nowhere GO-TO-THE-BATHROOM-RIGHT-NOW-RIIIIIIIIIIIGHT-NOW feeling appeared. I hadn't even taken two steps into my apartment before I completely wet myself. The bathroom was less than 20 steps from the door, but I couldn't make it. So I went from feeling proud of myself on a big and exciting day, to peeing my pants and cleaning up my pee from the floor. It was not the best moment.

We're not done yet! Nocturia was another big one. Frequency wasn't just an issue during the day. I would also have to get up to go to the bathroom constantly during the night. I wasn't necessarily sleeping well for various other reasons, anyway, but this certainly didn't help. And then there were all the times when I didn't wake up. Yes, that's right folks, as an adult woman I have wet the bed around 10 times. There's nothing like waking up in the middle of the night only to realize what has happened, and then you're too tired/groggy/angry to want to deal with it, but you have to. This has happened twice in hotels, which just made the whole experience even better. I don't share my bed with anyone, but I really related to Honey, I peed the bed.

This has pretty much only happened during periods of stress, when I'm doing way too much and being overtired as a result. This is big part of why I decided to quit my job a few years ago. I still have other jobs, but the most stressful/tiring one is gone, and I don't think I've wet the bed once since then. Hooray!

On the medical response to all this urination stuff, I of course get asked about it and talk about it at every single appointment always. I've had ultrasounds of my bladder. I've been told I will maybe/probably have to add a urologist to my collection of specialists at some point. And of course, I was taught the palpate your bladder trick that I use all the time. I was also once prescribed something to possibly help with the hesitation issue, a drug generally prescribed for men with prostrate issues. My insurance company denied it because I was not a man. The doctor tried to fight for it and was denied. I didn't personally really fight for it because I didn't necessarily know that the drug would work, and I've learned that I have to save my energy for the inevitable insurance battles for the drugs I truly absolutely cannot survive without.

In sum, bowel and bladder problems are very common for people with MS. For this person with MS, they've been a pretty major part of my life for 10 years now, in varying degrees of intensity. Constipation or having a just generally sluggish, not correctly functioning waste system is just part of daily life. And bladder frequency/urgency/hesitation/nocturia/incontinence come and go.

More than you wanted to know? For some of you, probably. Sorry! But it's my life. This is what (my) MS looks like. This is stuff I have to think about and deal with all the time.

Shout out to the people in my life who let me talk about poop a lot, haha. Especially my mom, my sistar, my niece, and a few good friends. And to those among them who know about the necessity of my routine and work to plan around it!

This Week in My Life: Week 27 of 2016

This week sure went by fast. Recovering from an exhausting week is tough for anyone, but add in MS and the crushing fatigue that goes with it, and it feels like an impossible hill to climb. That said, borrowing some of this week's spoons to supplement last week's supply was absolutely worth it. So I'll keep trudging up the hill.

http://thedailyquipple.com/be-a-bright-light/

This week also went by slowly, with the endless nightmare that is the news. My heart/soul/mind is feeling broken and defeated and scared, and I say this knowing full well the place of privilege I speak from, and that there are many for whom the broken hearts and fear and distrust and hopelessness are millions of times worse. How do we cope and move forward with hope and make positive change? It can certainly feel overwhelming and impossible. One thing I've been doing this week (that I know full well isn't the big, magical answer or solution to the huge systemic problems and injustices) is focusing on the little ways I can be the change I want to see. For me, these actions are:

• being KIND always and to everyone
• noticing and celebrating beauty in nature and in humanity and creating some myself (I like the origami tradition of folding peace/hope/etc. "into" the cranes and elephants I fold)
• sharing/liking/signing things in the social media and online spheres that celebrate/promote/maybe-possibly-even-if-in-a-super-tiny-way-help-create-change
• having conversations with people in my life about these issues (a few race-related topics came up naturally last week with my niece and we had a few good little chats)

Will all of these things, even added together, make any difference at all in the big picture? No. But will they make tiny little differences in a few lives? Maybe. And will they maybe, possibly, when combined with all of the other people taking similar steps make lots of little differences that will add up to make a bigger difference? Yes, I have to believe that they will.

The view from here:

Ducks > Geese. By a lot.

What I read this week:

Everyone Brave is Forgiven by Chris Cleave. Another winner from one of my favorite authors.

Coming up:

Last night in bed, I came up with an idea for a new series on the blog. Leading up to my 10 year MS-versary in a few months, I'm going to do a My MS Symptoms 10 "Greatest" Hits countdown. I've had over 10 symptoms over the years, so I'll either try to limit it to the biggest ones for me or I'll combine a few on the list like numbness+tingling. 

I thought this would be a good idea because it would give a more clear picture to those people in my life who have never seen me with any of the visible symptoms, and who even if they are aware of the invisible ones, might not fully get it. This will educate those who want to better understand what I've gone through and continue to go through. I know many of the people in my life want to know more and want to understand, but some of them might not know how to ask about it, or they've tried and I just haven't really shared much.

But this is also the kind of thing I was looking for in the early days of my diagnosis. I wanted to read stories from a real person about what the experience could really be like, as opposed to a cold and clinical paragraph from a book or WebMD. So this will be me pulling back the curtain in a hopefully somewhat helpful and somewhat educational kind of way. And this is also the kind of thing I "enjoy" reading about from others in the MS blogosphere. It helps to make me feel less alone in this MS mess.

I've put this out there, so now I'm forced to follow through. First installment will be coming at you some time this week. I just have to decide what order to go in - chronologically in the order I experienced them or along a scale of severity/impact or some other way?

10 Years Ago This Month...

10 years ago in June, MS was already raging within me. It would take a few more months and things getting significantly worse before I would go to the doctor for the first time. But 10 years ago in June, my right leg was quite numb most of the time. It was an often painful, weird feeling. I play horn and when I played with the bell on my leg, it was agonizing. Sometimes it was less of a numb feeling and more of a pins-and-needles, my leg just fell asleep kind of feeling. Sometimes it wasn't just my right leg and foot, but my right arm and hand crashed the party as well. Again, since I play the horn, I noticed this particularly when playing the horn. I convinced myself that I just now had developed an allergy to nickel silver. I started doing research on how I could deal with this new allergy.

I told myself stories about what it could be. Not catastrophizing worst-case kind of stories, but more like, this-is-totally-normal kind of stories.These weird symptoms seemed to come and go a little bit or rather, sometimes be way less or way more intense. I didn't put it together then that heat was a big factor in swinging things to the worse side.

I eventually started to Google these symptoms, but didn't have a whole lot of luck, in part because I struggled to come up with the right search terms. I had enough trouble describing to myself what was going on. I talked to a few horn friends about the supposed allergy thing. It would still be almost 2 months before I told another person the whole story, when I mentioned to my mom in a by-the-way kind of way as I was preparing to hop in the car to drive 12 hours by myself that "My right leg has been numb for a few months now!" I'm sure she really loved how I chose to deliver that one.

By the end of August and beginning of September, things were very different. I was falling down and having a whole lot of difficulty walking. I eventually went to the doctor and I eventually got a diagnosis. But 10 years ago this month, I was living in semi-blissful ignorance. I, of course, wish now that I had gone in sooner and thus gotten on a drug that worked sooner and prevented so much of the awful damage that was done to my brain and spinal cord during this time. The often severe chronic nerve pain I live with to this day - could that have been prevented if I had recognized sooner that a constantly numb leg might be something to deal with? Probably not, but maybe.

But I'm also a little jealous of 10-years-ago me, who (despite my numb leg) had all kinds of dreams and plans that I thought I could achieve. [Current me, of course, still has dreams and plans, too. They've just changed, by necessity. And my belief that I can achieve them is probably not as strong.] That girl who had no idea of the onslaught of financial and insurance related hell that was soon to fall down upon her for probably the rest of her life. The girl who was just a student, halfway through her Master's degree. The girl who was young and healthy and independent.

Anyway, happy sorta-approximate MS anniversary to me! I'll be celebrating the *official* 10 year anniversary in September when I was diagnosed, but if you want to send gifts now, I'm told that the traditional gifts for a 10 year anniversary are tin/aluminum and the modern gifts are diamond jewelry. I'll accept either, just know that if you give me diamond jewelry I'll almost certainly sell it for cash because diamonds are NOT this girl's best friend. ;-) And, of course, I could use that cash to pay my medical bills.

This Week in My Life: Week 8 of 2016

Update on the car drama:

Took the car to a different place and was told that 1. the part had been put in totally incorrectly by the previous place and that 2. the real problem was something else entirely and that 3. it would cost about $400 to fix. Great. So the total with the part (that maybe wasn't even needed) + a rental car for one day + a new fuel pump + labor, the grand total came to $550. That would have paid for the new tires the car desperately needs, but oh well. At least the car is working again!

The view from here:

book + coffee + blanket = happiness

my mom made me this delicious breakfast burrito

it's looking and feeling a lot like spring out there
not at all typical for a MN february

On the MS:

Various paresthesias have been continuing, and now a more troubling issue has joined them: significant weakness of the left arm. Much like how I enjoyed making faces in the mirror when I had Bell's Palsy, I'm morbidly fascinated by this. Holding both arms above my head, or straight out, or in any position really, my left arm will slowly dip down lower and lower. It started yesterday and doesn't seem any worse today, but is also not any better. I experienced this before during my first awful year of MS struggles, especially difficult because I was trying to finish my master's degree in horn performance at the time and holding my horn up with my left arm was a major challenge. I'm still not sure how I completed my master's recital for this reason alone.

What I read this week:

• Reread my beloved favorite, To Kill a Mockingbird. It's as great as ever. So many dear characters and plenty of tears.
• Crimson Shore. Another thrilling adventure (ending with a massive cliffhanger) with one another beloved character, Special Agent Aloysius Pendergast.
• About three-quarters through Tess Gerritsen's Playing With Fire. This author usually writes medical thrillers, but this book centers around a piece of music for violin. Turns out Gerritsen is some kind of superwoman  - not only is she a doctor and a bestselling author, but she also wrote a 7-minute composition for violin and piano to go with the book. I bought a recording and it's pretty cool to listen to while reading the book since the piece of music is such an essential part of the story.

Good Vibrations

Headline from the awesome Lifehacker blog this week: "Phantom Cellphone Vibration is a  Sign You Need a Tech Break." This is when you feel your cell phone vibrating in your pocket, but when you check it you realize there was no vibration - or even worse, your cell phone isn't even in your pocket! So-called Phantom Cellphone Vibration is not a sign of psychosis, but rather an addiction to technology. The cure - take a break!

Tech Addiction or Something More Sinister??

Or - speaking from experience - I suggest it could also be a sign you have MS. During my early days of violently ignoring a range of symptoms from total limb numbness to constantly having to pee to an insanely itchy itch that could not be scratched to jittery, bouncy, jackhammer legs to falling down, I often felt this so-called Phantom Cellphone Vibration. I assumed I was going crazy. I was eventually diagnosed with MS, which explained most of the symptoms. But I still assumed the Cellphone Vibration phenomenon was a sign of being nutso and/or hyper-aware of the idea of receiving calls. When a few months down the line, I finally saw an MS-specialist neuro as opposed to a garden variety neuro I was stunned, startled, and amazed to discover that this was just another quirky MS trick. The neuro showed me that I had failed to realize the connection between head movement and this vibration experience. No phone calls for me - just Lhermitte's sign!

The Hard Way

Today's HAWMC prompt: Write about a lesson you learned the hard way.

The lesson I learned: Walking is awesome. The carefully coordinated choreography of muscles, tendons, bones, joints. Like magic, step after step, no thought or effort required. It's a joyful, beautiful, soulful act.

As a baby/toddler, the transition to walking was a scary one for me. I just couldn't quite trust it, so I would only walk while pushing around my little green and yellow shopping cart. Eventually, though, I left the cart behind and found my stride. Walking...even running....full speed ahead! It was no longer an issue - just a tool that was there, ready to be called upon at any moment. And a humble tool, never making an issue over the miracle that it was.

So for 24 years, I walked, completely unaware of the awesomeness contained in every step. But then MS stepped in and taught me the lesson the hard way. 

So, now I know. Walking is awesome. I'm lucky in that the gift - the miracle, the magic - that is walking was returned to me after an on-again-off-again year of major walking challenges. Now, most days, I can walk without conscious thought or effort. But I have learned my lesson, and I now acknowledge and treasure my steps through the world.

My dear friends, walking is awesome. If you are able to walk, please join me in celebrating this lesson. As you walk through your life today, please take a moment to really think through the magic that every step is. Pause to acknowledge the blessing it is to be able to walk without having to think through every part of the movement, without straining with effort to move your body from place to place. To think only of wanting to go from here to there and your body following through - it's delicious, isn't it? Try not to take it for granted.

I also recommend reading Kate Wolfe-Jenson's wonderful poem, The Magic of Motion. It captures this "lesson" perfectly.

The Tickle of Doom?

So, there's this tickle-like feeling on my back.

Just a light, fluttery, tickly feeling on a very specific piece of lumbar real estate. In a certain context, this feeling could be downright pleasant. In this one, it is anything but. It's not just that it's in a place that is hard to reach. It's not even that easy access for a scratch or rub wouldn't make a speck of difference. And it's not that it's the middle of the night when I should be sleeping and the sensory distraction isn't exactly welcome.

So, what makes this tickle so very upsetting to me at this moment? Because it is a tickle I know well. The exact same feeling, in the exact same location. The same light fluttery feeling at least a few times a minute that I felt quite often during Year One of MS (aka the awful-horrible-how-did-i-ever-finish-my-masters-degree-while-battling-relapse-after-relapse-and-just-dealing-with-the-scary-terrible-diagnosis year). The same feeling, in fact, that I usually would feel as a warning symptom, before the deluge of more-debilitating symptoms made their presence known. So, you see, a tickle is not just a tickle. It's not just one of the dozens of annoying little sensory issues I deal with in relation to MS. It's that its the symptom that I seem to deeply associate with that scary what-is-coming-next feeling.

After Year One of MS and its eight or so delightful relapses, after starting Tysabri and being relapse-free for 4-ish years, I did very occasionally feel the tickle. And its warning cry brought no following deluge, so my rational mind should be able to accept that this is not necessarily an If-Then kind of situation. And, I do, mostly. But this sensory misfire always takes me back to that scary, dark frame of mind. It always reminds me that there is scarring in my brain and spinal cord. It always reminds me that, warning cry or not, something could be coming next. Lots of things could be coming next. And next could be never, or soon, or later, or now.

Talk about the tickle monster.

5 Things Friday: Symptoms & More!

Who doesn't love a good list? This new series, 5 Things Friday, will just be various lists of 5 things. To make this seem cooler, I even made this:

Now that you're thoroughly convinced on the coolness factor, here we go! Since this is an MS blog, I'll start with an MS-related list. Since we are all not only our disease, I'll also throw in a more general about me kind of list.

Five MS Symptoms I've Experienced

1. numbness
2. assorted paraesthesia: tingling, itching, buzzing, etc.
3. bladder & bowel issues
4. foot drop
5. double vision

(unfortunately, this is not a comprehensive list, but a mere sampling)


Five of my Favorites

1. color: green (much to the dismay of my pink & yellow loving niece who tells me that I should not have green as my favorite color because "it's the color of POISON!")
2. movie: Life is Beautiful
3. music: In terms of genre, classical. If forced to choose favorite composer, probably Beethoven
4. book: I couldn't choose even if you tried to force me, so pleases don't try. It's hard to find a book that I don't like. I end up finding something to like/love in pretty much everything I read.
5. food: Thai. Mexican and Indian are runners up.

There you go. Now you know a few more things about me! Have a wonderful weekend!

Challenge Day 30: a vocab lesson

A bookworm from birth, I've always loved words. I even love all of those long awkward medical words those of us with chronic illness inevitably learn. But the final prompt in the challenge I've sometimes been participating in this month is pretty tough. I'm tasked with creating a new word to describe something in MS life that the current lexicon doesn't cover. One of my primary coping mechanisms has always been humor, so it should be no surprise that this little vocab lesson leans in that direction.

muffins?

muffinitis, noun: a condition causing an individual to misspeak due to mental fogginess from MS or medication, best treated with kindness and giggles

"Please forgive me if I say something unusual. I'm not a moron - it's just my muffinitis acting up."

And the story: I often experience some brain fog and/or fuzziness from medication. Sometimes, this brings on some aphasia. I have a great deal of trouble recalling the simplest of words, or worse, I will replace one word with a totally unrelated word without even noticing. Although on occasion I find this to be quite upsetting, it usually is cause for much mirth. My family and I had quite a laugh on the day I asked, "Where are my muffins??" I first received puzzled looks in return, as no one was aware that I had any muffins or that any muffins were anywhere on the premises that day. I was upset, because I needed those muffins! I explained that I knew that my niece had taken them from me earlier in the day and I hadn't seen them since. Eventually, we figured out that I was, in fact, looking for my slippers.

muffins!

Do you ever experience muffinitis?