It’s been a long time ago now, but our family used to have a dog when I was growing up.  I was in 4-H and one of the adults involved had an overnight doggie daycare that not only offered kennel services but also training and handling classes.  So when she said she would hold obedience lessons as a course through 4-H, I thought it sounded fun and signed up with our little dachshund named Fozzy.  

It was a good thing Fozzy was cute because we weren’t too far into the first lesson before it became abundantly clear that he didn’t have much going on upstairs. Initially, the trainer thought it must have been me doing something wrong, I was probably no more than 13 years old.  I remember her coming over and taking the leash to do some one-on-one coaching with me while everyone else worked on SIT and STAY using pavlovian conditioning. However, she couldn’t get Fozzy to understand either and eventually gave the leash back to me and advised me to “just do the best you can”.  

Fozzy and I worked hard together for weeks trying to master SIT and STAY before finally finding some success.  Unfortunately, once he eventually got it and we moved on to another command, he started getting it confused with SIT and STAY and we were right back to square one.  Over and over we practiced but to no avail. We finally gave up on trying to learn a third command and went back to relearning the first two. Sadly, Fozzy and I never successfully graduated from doggie obedience school.

All the same, SIT and STAY ended up being pretty useful things to know.  Screaming SIT kept Fozzy from running into the street when a car came down the road.  STAY helped us break him of slipping out of his collar and running around like a crazy chicken with us following in hot pursuit all over the neighborhood every time we took him outside to do his business.

Little did I realize then just how hard it would be for me as an adult to conquer these two seemingly easy commands. The absolute hardest thing for me to do since this ordeal of living with MS started has turned out to be the only thing Fozzy ever successfully mastered.  I unequivocally and categorically have an impaired capacity, coupled with what I strongly suspect to be a willful disdain, for learning how to merely SIT and STAY. Time and time again I push and push and push my body WAY too far until my legs enforce a coup and SIT and STAY are obtained by browbeating me into submission rather than a graceful acquiescence on my own part. When I see a project that needs to be done, everything in my brain sort of snaps and I cannot make myself quit until it’s been accomplished.  My world is so upside down with MS that this crazy disease has even found a way to punish me for having a driven, solid work ethic!! (Well, that’s how I see it anyway. My hubby simply thinks I’m deranged when this happens 😉.)

Once again, I found myself at this all too familiar crossroads yesterday.  As I was moving and sorting through boxes in the garage looking for the birdseed I knew had to be out there somewhere, I heard the firm voice of reason saying, “Woman, stop! You are getting too tired. SIT and STAY in a chair for awhile or else your legs are going to give you fits of spasms and you’ll battle with obscene levels of fatigue for days.”  However, at the exact same time, I could hear my own placid but neurotic voice whispering, “There’s just a little bit more to do. You’re almost done. Keep going.” Which voice did I ultimately end up listening to? Well, I’ll give you a hint. As it turns out, Fozzy was smarter than me.

Freedom, My Old Friend!

Crushed on the couch because I got dressed. My legs are telephone poles, it’s going to take a Mack-Truck to move them. Each arm is a 500 lb bar-bell. The remote is just a couple inches away. My brain keeps saying “reach out and get it” but nothing happens. I can’t sit up, I can’t even raise my head. It takes all my energy to blink my eyes. My mouth is open, too slack to close and it takes all my concentration to muster enough energy to swallow. One hour down, now three. I can hear. I can see. I know I am breathing. I can’t feed myself, maybe in the next hour. My chin itches but I don’t care, I’m too tired to scratch it. It’s four hours now. I think I can move my hands. Yes, but my fingers aren’t strong enough to push the buttons on the remote. Maybe 30 more minutes will do the trick. It was all noise before but now I can make out the words from the music playing on TV. I like this song, I don’t need to change the channel. Todd pulls me up so I can sit. Easy does it. Just enough energy to feed myself. The drink is too heavy to lift, but I can sip through a straw. I have to lie back down to rest. Two more hours pass but at least I can follow the plot of the show Todd’s watching.

MS Fatigue is not the same as being tired. You are tired when you expend a lot of energy, like overworking in the garden, or when you don’t get enough sleep, such as pulling an all-night study session before a test. MS Fatigue has nothing to do with sleep or overwork, it is present no matter what, and it is so oppressive no amount of will-power or positive thinking exerts any difference over it. It takes you and holds you prisoner in a nearly unresponsive stupor, virtually catatonic. Sometimes the excessive, paralyzing, worst form of fatigue enters and exits daily. Other times, it comes and goes like a distant relative you only see on holidays or special occasions. I hate it. I don’t have the vocabulary to explain it. I dread every time it visits. It doesn’t wait for invitations, it just shows up and demands an audience. I’ve been under it’s stern, cruel rod of chastisement more times than I can count. It doesn’t get any easier, BUT I know it won’t last forever. It will eventually ease and, though it may seem reluctant at first, let go of it’s vise-gripping, soul sucking, strangle of me and let me breath the air of freedom again.

(Inhale) Freedom, (exhale) my old friend!

Drop Everything! #ThisIsMS Awareness Week

If I had to have a bumper sticker permanently affixed to my back, it would probably say, “Don’t follow in my footsteps, I bump into walls.” Actually, I don’t just “bump” into them, I tend to fall into them. Lately, I also lean on them when I walk to help keep my balance, but that’s neither here nor there. “I’m not drunk, I have Multiple Sclerosis” or “My bruises and scars tell a story, the story of my MS” are two common sayings in the MS community. Clumsiness and coordination issues are typical problems with MS. I noticed mine started about 8 or 9 years ago, but they gained momentum from 2017 onward and have really spiked in the past five months.

After I dropped the coffee can a week or so ago and was cleaning up millions of grounds from the kitchen floor, I got to thinking I should document all the things I drop in a single day. Since it is #MSAwarenessWeek , I thought it was as good of a time as any to share something MS related from my typical day.

So, the following are pictures of all the things I dropped that day, starting with the milk I got out to add to my coffee that morning. We ended up having to go old school and open the container like kids do from school milk cartons. When the carton fell, it somehow managed to tear the plastic rim of the pour spout away from the surrounding cardboard.

Next, I tried to make a fruit smoothie for breakfast. By the time I had finished there was probably only half of the yogurt left in the container because I dropped it…twice!

I really do try to be careful, but klutziness just happens wherever I go! {sigh} I’d like to say my gawkiness happens most when I am distracted or multi-tasking, and that I can control it by just focusing a bit more, but that’s not true. It does occur more often when I am tired, although it hits on less tired days, too.

I did eventually manage to finish making and eating the smoothie and moved on to taking my daily fiber gummies. I try to eat a healthy, balanced diet, but MS has a way of creeping into absolutely every part of life. When you can’t walk or exercise every day and you have to take medication to manage muscle spasms and excessive spasticity, it’s hard to keep your gut moving. I imagine you can work out the rest. Anyway, this peach flavored goo never made it to my mouth.

The rest of the day progressed in a somewhat graceful manner, but I decided to err on the side of caution when making dinner. Todd bought me these handy-dandy, cut-resistant gloves a few years ago to keep my digits safe. I thought they were a good idea, too. The P.A.s at urgent care were starting to check me over more closely and asking questions about my well-being after stitching me up on two separate occasions for knife wounds.

I’d made quite a large batch of beef stew that night and divided it up between a few single serving containers to put in the freezer and a larger container to keep some for dinner the next night. Thankfully, there was just a little bit left in this bowl before I ham-fisted stew all over the cooktop.

Despite the messy kitchen episodes, it had been a decent day in other rooms of the house. I frequently drop my toothbrush as I’m brushing my teeth and fling toothpaste all over the mirror, counter, sink, my clothes, and my face. I usually drop the TV remote at least once a day, but had managed okay this day. However, after dinner I decided to do a little reading. I dropped the book not once, not twice, but three times.

I officially became old eight years ago when I noticed I had to take my glasses off to read. I do have bifocals, but I usually prefer to read without them. As a result, I take my glasses on and off several times during the day. I dropped these exactly five times during the course of the day, which was about 40% of the time I messed with them. Two of these were during the time I was reading.

Before I went to bed that night I helped Todd fold the laundry. My P.J. bottoms ended up on the floor two times before Todd grabbed them from my hands and folded them up and put them away. I was really getting tired by then, and I think he knew they would end up crumpled on the floor a couple more times, so he saved me the effort and did it himself.

The National Multiple Sclerosis Society wrote the following for the first sentence describing MS Awareness Week 2019, “Every day, people living with MS do whatever it takes to move their lives forward despite the challenges.” Even though I’ve only been writing my blog for a little over a month, I’ve described my disease course and symptoms in several of my posts. Clumsiness and coordination problems are just a small part of my daily challenges. I encourage you to check out the National Multiple Sclerosis Society’s website this week and consider making a donation. Or, if you would rather wait, Todd will be riding for me in the MS 150 this fall. He will be signing up soon and you can donate to his team in my honor. They are so much closer to finding a cure now than when I was diagnosed 29 years ago, I think it is possible I will live to see them find out what causes it and possibly even a cure.