While Living With MS, Good Planning Is Key to Avoiding Chaos

Beth Ullah avatar

by Beth Ullah |

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“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.

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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!


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Fred Johnston avatar

Fred Johnston

I recommend buying a spare charger at Amazon, and a spare key to keep in your wallet for $5 at nearest mobility store!

Fred

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Leanne Broughton avatar

Leanne Broughton

I always forget something despite the fact that I having a list that I am constantly refering to. We do a week every summer in which we self cater in a cabin we have been going to for years so I know what they have and I need to bring. There are no longer children going but we seem to have less room in the car. This year add a walker and a wheelchair.

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Bonnie avatar

Bonnie

Thanks Beth! Your description of planning is on-point with my experience as well. I assume my previous planning skills will just turn on like they used to. It is difficult to navigate relationships with this sort of hindrance as well. I am not as "responsible" as I used to be. I am not as "dependable" as I used to be. This can be difficult for the people in my life to understand. It's a struggle to know that I can and might disappoint the people I love when I am not the wife or mother I used to be. Thank you again for this article.

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