As anyone who has read my blog or knows me personally is aware, my MS symptoms are numerous and affect most aspects of my daily life. Because progressive (stupidest term for a degenerative disease) MS doesn't hsvr many treatment options, I rely heavily upon pharmacology to allow me to move with as little assistance as necessary. I do tend to rely on my friend Citizen (as in Cane) when walking, but for the most part I don't rely on much additional assistance. This is due to a combination of medications such as Butrans (10mcg/hr transdermal pain patch), Soma 350mg twice daily, Roxycodone 10mg, and two different strengths of Ambien to help me sleep.
As I have mentioned before, I rarely feel any effects from these medications, and often wonder if they are actually working at all. Due to this, my doctor changed my pain patch from Butrans to Fentanyl (12mcg/hr). The Butrans patch was good for 7 days unlike the Fentanyl patch which was only good for 3 days and was the size of a dime.
When my doctor made this change, I did noticd that I had much more "breakthrough pain" than I did with the Butrans and I was yawning much more. I had more trouble keeping the constant spasms at bay and could not make it through the day without the spasms and constant muscle contractions that render me rather useless appearing more and more. Again I felt as if yet another medication wasn't doing it's job.
One Friday night I realized that I was completely out of my Fentanyl and my Roxycodone. Unfortunately, I realized this at 2am when my body had many movements going on and none of them were coordinated by my brain. Try and remember how you were during puberty (ie. Walking into things, bumping into things, no coordination) or how Stevie Wonder would look if his wife suddenly moved all the furniture around in their house.
I took my Soma (500mg at the time) as well as 40mg of Ambien, sat down in the shower with the hot water massaging my extremities, and also took 40mg of my Flexeril (backup medication for when I am not able to take narcotic medications) as well as repeatedly attempted to pace around my living room hoping to get the meds circulating. In spite of all this, I felt no relief of my symptoms, however I did learn that at 3am, I can provide worlds of laughter to my wife and uncertain fear in my dog (rest his soul).
I tried my best to handle my situation as quietly as possible so as to not awake my wife.who had work early in the morning, but apparently my complete lack of balance, coordination between limbs, and constant falling caused her to awaken enough to see my plight and observe the humor that MS can bring at such an early hour in the morning. After what must have been my 3rd or 4th faceplant onto the bed after falling over myself, I heard her start to giggle. For those that know me, I DO have a sense of humor, however I also get very upset when I am vulnerable. So, with this knowledge she must have been trying very hard to keep her laughter hidden in fear of me becoming angry. However, after stumbling around the house like a newborn Bambie on that frozen lake, even I had to submit to the hysterical image that was me at this given moment in time.
You are now picturing Bambie on the lake with Thumper as his limbs flail in every which direction as he struggles to find balance. Now, replace Bambie with me. This is what my wife was watching unfold before her eyes. You may also be aware that both my wife and I have been in fire/rescue for a number of years, and as such have come across many stumbling drunks who have required assistance getting around due to their alcoholic coordination issues. Apparently, as I was later informed, I made many of them appear sober compares to my movements in my living room on this particular evening.
Although I was practically in tears due to the fact that I have never felt so out of control when it comes to my body, I was able to see the humor of the situation and imagine seeing myself through another's eyes. Granted, this is a part of me that I refuse to allow others to see and why I rely on my medications, I didn't feel as embarrassed sharing this event with my wife. After all, "for better or worse" and this was definitely the worst that it has been.
I finally passed out around 7am, and the minute my doctor's office opened my wife was on the pbone with them to get an immediate refill of all my prescriptions. By 3pm I was able to have meaningful movements again and was back to my normal MS self. However, we did continue to reminisce and laugh about this event over the next few days as we mentally pictured my Bambie-like self stumbling and falling all over the house.
It is times like these that I realize my medications do seem to be working, that the disease has more of a hold on me than I lead others to perceive, and that laughing at yourself with your spouse (or significant other) can make a completely shitty situation a little more tolerable regardless of what time of day it is. I like to pretend at times that this isn't my life, but merely something like it.
Sunday, July 28, 2013
Late night laughs
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