I keep thinking, thinking, thinking (wishing?)…If I would just get up and DO more...(you know, the blame game, the one that fools one into believing “I have more control, more power” than I do)…yes IF…THEN… I could somehow DO more all day long, like other people…like physically abled people. Maybe I'm not trying hard enough. Maybe if I pushed harder I could build up my endurance and my legs would eventually stop shaking and buckling and dropping me to the floor...maybe my legs and back would stop cramping, maybe my head would not twist from side to side as though possessed by a dybbuk; "no" or up and down "yes". Maybe if I really tried I could retrain my brain not to become disarthric when tired (sometimes for days after the onset), or lose my balance and stumble looking to those unfamiliar with neurological diseases like a person who is quite inebriated (even though these are the things that always happen when we push too hard in physical therapy and also completely randomly and unexpectedly at home when I've done absolutely nothing but rest.) Yes the MAYBES attached themselves to the IF....THEN's...a nearly unstoppable locomotive. Maybe I can stay on THIS medicine…maybe my senior neurologist will say I’ve still got time on this drug, it’s keeping new lesions at bay after all. She MIGHT say the danger of staying on for another year while a higher risk for developing PML, is still worth the benefit. I've had the JC virus all along, so far have not developed it...she really might think that's the best plan. So what if my response to Tysabri isn't as spectacular as it is for some patients (some people feel more energized and their walking improves, my walking has gotten worse). There are risks with every single other drug therapy too.
There it was, the reality I had chosen (until now) not to think about...the reality of "I just don't have any idea what she will recommend or what I will choose given her suggestions". The wishes and worries grew louder and louder and louder in my head. They are very hard to tame, to simply be with, when I give them that amount of attention, so I tried again to release the tightness around my blue heart…to feel it, see it, hear the words and let them slide by, breathe, let them go. I meditated in the darkness that eventually lightened to a flat, gray expanse outside my window, inside my mind.
Through my tears I told him how sorry I was, sorry that this was his life too, sorry because this illness is not mine alone. And he stood there silently, allowing me to just pour out my heart until I was empty of words and tears. I felt such sorrow for him, for the girls. Sorrow mingled with gratitude for this man who has never once complained, who is ever present, who cares for me, compassionately lifts me up when I fall, carries me when I cannot walk, prepares meals for me, for the children, for himself, works hard to provide a home for us, who has been my best friend and confidante for nearly 25 years. The sadness receded, the love rushed in like high tide.
Sometimes I think my life resembles that of a cat, although they nap and I don't. I'm awake all day, and my mind is active, creative, inquisitive, engaged, busy. My muscles are reasonably strong all things considered, and I still have been able to maintain fair flexibility, but they do not work well in concert because my nerve conduction is poor, and they seem to work against each other instead of with each other, therefore I feel incredibly caged by fatigue when I try to DO much of anything that includes walking or standing for longer than a few minutes sustained.
Doctors and OT’s and PT’s recommend, “pacing” myself. Completely logical, but HOW can a person ration off their daily supply of energy when it is never the same supply, day-to-day, moment-to-moment??? (Ok admittedly, I should have known that going from tub to laundry was asking too much of my body with out resting in between.) My physical therapist knows me so well at this point that he can usually tell by my gait as I walk into the gym with my walker how much to push me…but sometimes he can’t, sometimes we go too far and I leave in a wheelchair, and Gordon piggy-backs me up the steps to bed.
It is impossible to describe the density of this kind of fatigue to anyone who has not experienced it, except to say; the weight of it has me waiting for bursts of energy (again visualize a cat) and then wading back through the thickness, for that is what it feels like, when my nerves are over taxed; wading through something thick, heavy, immobilizing, like mud or quicksand. I cannot lift my feet off the floor without assistance when fatigue mysteriously creeps in. I either lift my feet and drop them down hard like Frankenstein's monster or shuffle along awkwardly, legs quaking. Without something to grab hold of I fall. With rest, I can start again...but it all depends on the day, the phase of the moon, the alignment of the stars, the temperature in San Diego, the barometric pressure in London, how many people are at home on our street at the same time, the number of buttons on my shirt (if my shirt HAS buttons that day), what we will be having for dinner in the evening (even if it is now morning)...I think you see my point.