MS Needs to Check My Calendar First
Sometimes I just get annoyed with symptoms of MS that jump up out of nowhere. After living with this disease for more than 9 years (most likely 14 or more), I have become intimately acquainted with my particular MS symptoms. There’s the numbness in my limbs and occasional pain on the side of my face.
Leg weakness is an issue which gets significantly worse when I’m fatigued or overheated. I remember the time in Las Vegas when Rob and I were walking back to our hotel after the tram service had closed. We really should have hailed a cab. We stopped so many times for me to sit and it seemed to take hours to get back. But at least my “crazy, drunk legs” fit right in with the crowd in the hotel casinos.
During the summers, my brain tends to go all mush just like my legs. Heat really becomes the enemy at times. With the crazy winter we’ve had (including snow showers just a few days ago in DC), I’m really hoping for at least a bit of springtime before we jump straight to the heat and humidity of the summer.
But the symptom which seems to be more intrusive when it arises is spasticity!! I remember the first time I experienced a serious attack of spasticity; it prevented me from being able to stand entirely straight. It felt like my hamstrings had suddenly gotten shorter and I had no choice but to keep my knees bent.
Then there’s the spasticity that causes my calf muscles (primarily the outside ones) to knot up into hard rocks which sit just below and to the side of my knees. This type of spasm is particularly difficult since it doesn’t respond to gentle stretching as the hamstrings may and these spasms are different than typical “charlie horses.”
Knotted calf muscles have been the source of tears on more than one occasion due to the severe pain. Thankfully, this particular MS symptom is not an omnipresent one. It comes and goes. Last year it had gotten so bad at one point, however, that I questioned what else we could do about it. My nurse practitioner prescribed a low dose of diazepam (brand, Valium) for when it becomes tear-inducingly-painful.
A couple of days ago, I began experiencing one of these spasticity/spasm attacks. At first, I increased my nightly baclofen dose. That didn’t work. Then I dug around in my prescription drawer (yes, the top drawer of my nightstand is significantly occupied by vitamin and prescription bottles) to locate the diazepam. I took one before bed and then another in the morning. Rinse and repeat.
Today, my leg is to the point where I can actually stretch the muscle out a bit. Whoohoo! The knots are not entirely gone, but at least I can rub them without wanting to cry. Maybe they are even soft enough that Rob could help rub out the remaining tension without me involuntarily kicking and repeating the words - ouch, ouch, ouch - over and over again. We can test that presumption a little later.
Although I’m still not used to the idea of using a benzodiazepine medication for muscle relaxation, I have to admit that it has been very helpful. A side bonus...I feel more relaxed in general as well.
Now I can more effectively focus on the immediate tasks at hand, such as practicing and rehearsing piano music to accompany almost 20 students at the solo festivals occurring this month, planning a trip to Boston and another to New York City in a couple of weeks, reviewing material for a client, and sitting down to write a post or two.
MS is not on my list of “things to do” so it can just keep itself out of the limelight. I’ve got more important matters which require my attention, thank you very much. Now if only MS would always check our calendars before intruding upon our plans. That would be very considerate.
Got that MS? Check with me first before you decide to tie me up in knots. Much appreciated.
Have you ever experienced any of the following financial struggles due to your MS?