I’ve struggled with how to write this. I have attempted it now for two days on several occasions but the words just weren’t there. I’ve had 2 persistent questions I can trace the first origins of to the fall of 2001. Although I’d had three full blown flair-ups of my MS over the previous 11 years after my diagnosis, all the symptoms disappeared after the relapses and I couldn’t tell any discernible difference physically between before and after they took place. But 2001 marked a change. After the dust from my relapse that year had settled, I noticed I fatigued more easily and quickly than usual (the number 1 symptom of most MSers). I also began to have some issues with my bladder (also a highly common symptom) and my coordination was just not like it had been before. That’s when the seeds of “What’s going to happen to me in the future?” and “Am I going to have to stop working?” first started stewing in my mind.
Well, from 2001 onward to the present time, I have had 1-2 exacerbations a year with the exception of 2007 and last year, 2018. My symptoms have been typical for MS and, with regard to walking, the following have come, gone, and some have stayed: poor balance and coordination, muscle cramps related to too much muscle tone in my calves and thighs, tingling, heaviness in my legs, the feeling of pins and needles in my legs and feet, total numbness making it nearly impossible to know if I have moved my legs, and a total inability to walk at all. Other parts of my body have been affected, too. I’ve had numbness, the feeling of pins and needles, tingling, and heaviness in my arms, face, and torso as well as problems with dizziness, coordination, bladder and bowel dysfunction, and word finding problems. But worse than all of these has been the fatigue related to MS. The fatigue is unique and is caused by all the damage done along the nerve tract over the years to the myelin, or coating that wraps the nerves to help the signal move along quickly, just like the insulation around a wire that carries electricity. When myelin is destroyed, the signal from the brain to the different parts of the body can’t get through very well, or sometimes at all. Your body has to work extra hard to make the signal get to the parts of your body that have been affected. All this extra work requires energy. Your nervous system can’t work without electrical impulses so it will use however much energy it needs to get the job done. Of course, no one has a limitless well of energy. Therefore, when the majority of your energy store is being used up just to communicate signals in your body necessary to function, it leaves a very shallow pool from which to draw from to do everything else.
It’s very hard to describe the fatigue of MS. It doesn’t have anything to do with how much sleep I get or how much I rest during the day. Sometimes I wake up after a good night’s sleep and, first thing in the day, the fatigue is so great I can hardly hold my head up and I can feel the energy ebbing away just by blinking my eyes. Other days I wake up and seem to have energy to walk and go about my activities but then, WHAM! In a matter of seconds fatigue hits and I have to stop immediately and rest for hours in order to recover enough energy just to sit up again or to walk across the room.
Over the course of my professional years working as a speech language pathologist (SLP), I have had to make accommodations for my MS in order to continue doing my job. First, I had to stop working with little kids because they just required too much energy and would wear me out quickly. Next, I had to stop travelling so much while working in a private practice because driving made me tired. This was followed by having to change jobs to one where I didn’t have to travel at all, then I started using a scooter at work, twice I had to reduce my hours, and finally I took medical retirement 2 1/2 years ago . Since then, I have worked at a local university 2, six hour days per week, in the fall and spring semesters, supervising graduate students in the clinic as they learned how to do therapy.
I just resigned my position at the university this past Friday. I had been struggling with another down turn of my MS since October, 2018 which ultimately culminated in a full-blown exacerbation mid-January, forcing me to miss the first two weeks of the semester as I took and then recovered from huge doses of IV steroids. I returned to work 2 weeks ago but I knew pretty quickly the last hurrah had come. The energy required to get dressed and ready to go, drive, walk in the building, meet with my students, observe their sessions, edit their documentation, get back to my car, and drive home left me absolutely bankrupt of energy. The other 5 days of the week when I wasn’t working had to be spent trying to recoup enough energy to make it back to do 2 more days the next week. I could barely walk independently, get in and out of the bath/shower safely on my own, make it to the toilet… and my other symptoms, such as poor balance, clumsiness, word finding issues, et cetra were worsening.
So, within the space of just a few months, both of the questions I started wondering about way back in 2001 have finally found an answer. As I’ve mentioned in another post, my neurologist and I think I’ve walked to the edge of Relapsing Remitting MS and am staring at the prospect of Secondary Progressive MS a lot more closely than what feels comfortable. I guess that answers the question of what my future is going to look like. I’m so thankful it’s taken 29 years for that answer to come. The 2nd question came to it’s ultimate, final answer Friday.
It’s hard, but not unexpected. I’m sad, but not devastated. I’m still trying to get my head wrapped around it all.
But this is not the end of everything and it isn’t the end of my fight with MS. I’m still alive and I’ll lay out my battle plans in the next installment of this 2 part story.
To the praise of His glory,