While Living With MS, Good Planning Is Key to Avoiding Chaos
“Without leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning.” ― Gloria Steinem
For as long as I can remember, my father has always had a saying: “Perfect planning prevents piss-poor performance.”
Much to my husband’s frustration, though, I’m still learning how to implement this in our day-to-day lives following my diagnosis of relapsing-remitting multiple sclerosis a few years ago. The problem is that it’s not intrinsic in my mind yet, as much as you’d think it would be by now.
Several things fall under this category, in which my mind subconsciously reverts to life before MS. An example is going to the bathroom in the middle of the night while I’m half asleep and my brain hasn’t yet processed that I can’t sit up in bed, move, or walk the way I used to.
Planning is another example. I still instinctively hold myself to the same standards as before. I’m not quite used to the fact that I must allow myself more time before leaving the house or preparing for a trip. It must be a conscious thought, otherwise I’ll forget, or perhaps I’m simply too fatigued for the conscious thought to appear.
After returning from a vacation we took two weeks ago, I’ve been thinking more about planning. Leading up to the trip, I left my suitcase open on the living room couch, a tactic that had both pros and cons. I wanted to be prepared, and leaving the suitcase on the couch meant that any clean washing I wanted to take with us could simply be deposited in the suitcase without having to go upstairs, put the clothes in the wardrobe, and then bring them back down later.
Of course, distributing the packing over several days also meant that I forgot what I had packed! At least my clothes were in the same place, even if they weren’t properly folded and packed until the day we left. The main benefit was that it helped me to manage my fatigue, which was a good thing for going on a busy trip.
Medication was the next thing on my list. I have previously explained why I choose not to take medications for the majority of my symptoms, and with Lemtrada (alemtuzumab) being my current disease-modifying therapy of choice, I don’t take many daily prescriptions. The main ones are amantadine for fatigue and baclofen for spasticity, the latter of which I use as little as possible because it exacerbates weakness.
I confirmed that I had enough amantadine for the week, based on the highest dose I’ve been prescribed. In hindsight, I should’ve ordered my next prescription to collect upon our return, but you live and learn.
Then came mobility aids. We had planned to go to Monkey World in Dorset, U.K., during the week, and I wanted to use my scooter instead of renting one, because I know how mine works. This meant we had to pack it tightly into our small car, ensure that it was fully charged, and remember to bring the key and charger. (I’d forgotten the key once before.) We also needed my wheelchair for a boat trip that couldn’t accommodate my scooter. Added to that was our luggage and our dog. It was a tight squeeze!
In terms of leaving our house, we had to make sure our windows were locked, our garbage bins were left out for collection, and any food that would go bad was disposed of. Oh, and we had to drop off the cats off at the cattery. Needless to say, the morning we left was manic.
I hoped that my planning meant I hadn’t forgotten anything, especially the things I had to pack at the last minute, including makeup, toiletries, and a hairdryer.
Then came the planning for our week away from home, which included accessibility concerns at our intended destinations.
Just writing all of this down has made me more tired than actually living it, which I think means I managed to get it right at the time. We did forget to bring one thing home afterward — my scooter charger. So I’ve been housebound since we returned. Hopefully, it’ll soon arrive in the mail.
I realize now that planning must be a conscious thought process for me, and I’m still not perfect at it. My wonderful husband picks up the slack, though, when I haven’t considered everything. Chronic illness certainly makes spontaneity difficult!
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