Multiple sclerosis can really get you down. You can almost plan on it. That’s why plenty of long-time MSers recommend planning down-days.
What are down-days?
These are those days when we lighten our calendars on
purpose. We might stay home and pursue low-stress calming activities. Maybe we
do some simple crafting, read a book, binge a favorite TV series, or even take
a nap.
This isn’t slacking.
We’re recharging our batteries, stepping away from stresses, and setting ourselves up for future activities and responsibilities. Essentially, we are becoming better stewards of our own bodies, particularly with MS playing non-stop in the background. Even when we aren’t enduring a full-blown exacerbation, most of us still combat symptoms. And the possibility of a flare-up always lurks nearby.
Down-days are extra important for the MSer. Even while we are stepping back for rest, we are still at war with this crazy disease.
When are down-days most needed?
Personally, I have found that I can pretty much count on needed a down-day (or more) after a busy week or a full weekend.
Here’s an example. Last weekend, I went to an evening movie with a friend on Friday. I participated in a choral music festival on Saturday afternoon and evening, followed by chugging my way home (solo) in a blizzard. Sunday I vended at a saddle and tack sale. All this came after a full week that included some important meetings, plus a couple of medical appointments and a funeral for a friend.
These were all worthwhile activities with people I appreciate.
Still, it was no surprise that I was completely trashed on Monday. MS had me whirling with vertigo. My head throbbed with migraine. Various muscles were cramping, and that weird tingly nerve pain came alive again. Worst of all, the classic MS fatigue was at full peak.
Fortunately, I was able to clear most of my calendar for Monday and part of Tuesday. That need was easy to anticipate.
Occasionally, life becomes complex enough that we can’t just simplify our schedules. We know we’ll be overwhelmed by a few overdone days. But we go ahead and slug things out the best we can anyway. That’s when down-days become especially essential, if we can just hold on long enough to reach them.
Down-days are easier when they are planned.
Ask anyone battling MS, and you’ll hear that it’s a whole lot simpler to set aside preventative rest days than to wait till the MonSter sidelines us with serious symptoms.
Forgive me for preaching to the mirror again.
I’m still not so good at this. It’s hard to sit out of amusing, interesting, or exciting events. It’s tough to turn down projects. It’s disappointing to miss out on fun gatherings. Deliberately declining any of these isn’t easy. But it’s important.
People with invisible illnesses like to talk about the Spoons Theory. Basically, this holds that each of us starts each day with a handful of spoons. The spoons represent the energy we possess for that day. We never know how many, and this varies with each day. When the spoons are done, so are we. The trick is to pay attention and budget those spoons wisely.
It’s a challenge. It’s hard to say no – even to ourselves.
With this in mind, it stands to reason that planning frequent down-days can help to set us up to greet upcoming days with a few more spoons.
People will struggle to understand our need for down-days.
MS is known as an invisible disease, because it can be difficult for onlookers to notice. (Other invisible diseases include chronic fatigue syndrome, Crohn’s, diabetes, fibromyalgia, lupus, Lyme, migraines, narcolepsy, rheumatoid arthritis, and more.) As a result, many folks may have difficulty understanding or commiserating with MSers, even during flare-ups. What’s more, people may not comprehend why we might suddenly bow out of a social commitment, cancel a business meeting, opt out of a trip, or decline an invitation.
They may suspect we are merely making excuses. Some will even say so.
Whether folks get the picture or not, we have to find ways to manage our lives with MS.
Sometimes we just have to step away, whether we plan it or not.
By dedicating portions of our future scheduling to down-days, we hope to set ourselves up to manage MS triggers ahead of time. Fatigue and stress are universal precipitants for MS symptom aggravations. And down-days help to stave those off.
Remind me again.
The tricky part is that we tend to want to make the most of our best days. When we feel pretty good (as in, when our worst MS symptoms are not raging), we like to pack all of the projects, errands, outings, and other highlights into our schedules. But when we overdo it, we almost always pay the price later.
Down-days can help to keep the MS warrior up and running.
Related items:
· Can MS show you how strong you really are?
· Excuses: Ever played the MS card?
· Life with MS: Sometimes you feel like toasting, but other times you're just toast.
· Maybe it's one of those imMeaSurable Mondays
· Nerve pain feels like coming apart at the seams
· Somebody stop me. I've done too much. Again.
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