If you've ever been so sick or so tired that the thought of doing anything beyond brushing your teeth and throwing on some clothing makes you want to weep, then you have some idea of how MS-fatigue feels. A friend of mine said it was like sinking into quicksand. I used to think of it as a heavy, dark curtain falling over me, forcing me to stop whatever I was doing and rest. Regardless of the metaphor used to describe it, MS-fatigue is both unrelenting and overwhelming.
It's been six years since the Big Exacerbation hit, six years of gimpy legs, canes, ever-more limited physical capabilities and fatigue, fatigue, FATIGUE. Fatigue is my appointment secretary. It dictates what I can and can't do every day, whether I can manage to exercise and go to the grocery store in one morning or whether I'll need to spend all day doing nothing but checking email, watching DVDs and sleeping. On a 'good' day, I can manage 40 minutes on my trusty Theracycle, a drive to New Seasons for groceries and maybe even a light chore or two before I have to collapse and sleep. But I still haven't adapted to this way of living, not even after six years, not really. Because I still want so very much to live my old, 'normal' life, the one where I could do pretty much whatever I set my mind to do. Change jobs? Sure. Change careers? Absolutely! Move across the country and start a new life on the West Coast? Hell, why not? Travel to China - alone - for work, in the early 1990's, before China had truly opened up to western visitors? You betcha!
Now? It doesn't matter one teeny, tiny bit what I want to do, or how much I will myself to do it, because my new Appointment Secretary controls what I'm able to do, regardless of what I want to do.
So why am I whining about this issue again today? Because I'm trying to recover at least some of my energy after a week-long visit from my beloved son and his sweetie, who spent their spring break week with us. I LOVE having my son nearby. I love being able to talk with him, to hear what new things he's into, to see him so in love with his sweetie and, best of all, to hug him whenever I feel like it (he's very tolerant of my need for hugs, which I appreciate). He and Emily are extremely undemanding visitors, asking for little more than visits to the Japanese and Chinese Gardens, access to cats, and an adequate supply of Diet Pepsi. But I'm determined to make the visit something good, something special, and I always end up doing too much, resting too little and running on empty, energy-wise, when they leave. This visit, I was too damned exhausted to sit in the car when David drove them to the airport, so I stayed home and rested instead. This damned MS Appointment Secretary made it impossible for me to spend an extra half hour with my son even though I desperately wanted to grab that extra time with him before he left.
And I've been more limp than the proverbial wet noodle ever since. I sleep eight or nine hours at night - deep, uninterrupted sleep - and I'm too tired to do anything requiring energy within an hour of waking. I'm too tired to cook (last night, I made a tossed salad and that was exhausting). I'm still running on empty, three days after they went back to Minneapolis (three lazy days spent doing nothing) and I'm not quite sure how to fill that energy tank back up.
Maybe I should end this post and rest a while, huh? Or even better, maybe I should figure out what my limits really are.