Learning to plan down-days

 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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Should MS treatments stop after age 50?

 

Maybe you’ve heard this: Plenty of multiple sclerosis doctors seem to be halting patients’ disease-modifying treatments at or after age 50. Others point to 60 as the magic age when such prescriptions may cease. The popular theory says the efficacy of such medications commonly diminishes as patients age, while the risks of continuing with the drugs may increase.

 However, recent research also reveals that up to a third of those included in the studies found their MS relapses and related disabilities increased after discontinuing their meds.

 

Holy moley. What’s a middle-aged MSer to do?

 We have to wonder whether this is an efficacy issue (for the medications), an economical one (for insurance companies), an efficiency concern (for medical providers) or perhaps an ethical one (for all of us).

 

We have to be our own advocates.

 Most definitely, each MSer needs to continue to research and learn and question his or her own care and treatment.

 Some of us may be able to stop disease-modifying treatments without suffering for it. After many years of unchanged MRIs (e.g., no new lesions), this may be an option. But this tactic is clearly not for everyone battling multiple sclerosis. Those with the most progressive forms of the disease may be least likely to benefit from such a choice.

 This simply cannot become an across-the-board standard for all MSers, regardless of health challenges, symptoms, and other conditions.

 

It’s not like the medical world can turn us out to pasture, as we age.

 Some 50-somethings (or even 60-somethings, 70-somethings, and beyond) still pursue a wide range of activities and endeavors. We may still have careers in our later years. We juggle multiple responsibilities and chase all sorts of interests.

 

Don’t let them tell you it’s all downhill from here.

 We still have mountains to climb and summits to reach. And if that means we need to continue disease-modifying therapies, then let’s make darn sure those remain available (and insurable) for us.

 

Related items:

·        Ain't nothin' pseudo about a pseudo-exacerbation

·        Beware the MS hiatus hangover

·        Changing meds: Safety tips for tossing leftover drugs

·        Reviewing the four types of multiple sclerosis

 

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Did COVID-19 flip you into an MS flare-up?

 Had COVID-19 yet? Did it lead to an exacerbation (relapse or flare-up) of multiple sclerosis?

You’re not alone in that. Tons of MS warriors can share similar stories of symptoms arising, reappearing, or intensifying after they battled the pandemic virus.

 

It’s the nature of the MS beast.

 The Cleveland Clinic lists MS as an autoimmune disease. That puts MS in a group with such conditions as these (listed on Web MD):

• Chronic inflammatory demyelinating polyneuropathy
• Graves disease
• Guillain-Barre syndrome
• Hashimoto’s thyroiditis
• Inflammatory bowel disease (IBD)
• Multiple sclerosis (MS)
• Myasthenia gravis
• Psoriasis
• Rheumatoid arthritis  
• Systemic lupus erythematosus (lupus)
• Type 1 diabetes mellitus
• Vasculitis

 Other lists also include Addison disease, celiac disease, chronic fatigue syndrome, and more. The Autoimmune Association cites more than 100 autoimmune diseases, while pointing out that it’s not uncommon for individuals to battle clusters of these.

 

Holy moley.

 The National MS Society calls multiple sclerosis “immune-mediated.” That’s how autoimmune diseases generally work their wickedness.

 In short, when the body’s immune system goes into action, it begins fighting infection. But in a person with an autoimmune disease, the immune system doesn’t seem to know when to stop. Essentially, it begins attacking healthy cells, tissues, or body structures. For the MSer, this means the immune system goes after myelin, the protective covering on nerve fibers.

 

And that can cause all kinds of havoc.

 Personally, I had a very mild case of COVID. I’m pretty sure it was the Omicron variant, breaking through the vaccinations I had received. I coughed pretty hard (like a cold’s chest cough) for one night. I had extra hearty headaches for a couple of days. Then it was over.

 

Except it wasn’t.

That’s when MS sent me whirling with its nasty old vertigo for a couple of days, coupled with fairly significant fatigue. My vision blurred in the same eye that first pointed doctors to identify MS via optic neuritis more than a decade ago.

 Ugh.  It was an MS flare-up. Doctors tend to tag such episodes, if they arise at least a month after the last time and persist for at least 24 hours.

 

And then, the whole ordeal truly was over.

 I’m grateful that this whole episode was uncharacteristically brief and that it is in my rear-view mirror. We’ve all heard of so many cases that did not go this way.

 If you have MS and have already come through COVID, how did it go for you?

 Because battle the MS MonSter and illness at the same time is no picnic.

 

Related items:

• Ain’t nothin’ pseudo about a pseudo-exacerbation.
• MS is like a carnival thrill ride without the thrill.
• MS is like the cancellation disease.
• MS symptoms fire when we’re sick.
• Optic neuritis: A look at sudden blindness

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Ever have a surplus of energy with MS?

Fatigue is a hallmark of multiple sclerosis. We get that. Sudden overwhelming exhaustion affects nearly everybody who battles MS.

Yup.

But if you have MS, have you ever experienced a seemingly random day (or even a few hours) of amazingly high energy? Ever surprised yourself with everything you were able to accomplish on a certain day?

That just happened to me. And it’s not the first time.

I’m not complaining. Just puzzled.

Maybe it’s not random at all. It just feels that way.

Once in a blue moon, I get to have a day when my head doesn’t throb or spin. My vision isn’t foggy and color-dim. Nothing hurts (at least too much). And I feel like checking all sorts of things off my never-ending to-do list.

 

It’s only noon, and I’ve already:

• baked a banana bundt cake from scratch
• changed the cat litter box
• cleaned out the refrigerator
• cooked a full breakfast
• loaded and emptied the dishwasher twice
• mended a pair of trousers
• polished the wood furniture
• prepared, published and posted a client newsletter
• refilled my bird feeders
• reorganized my pantry
• run a couple of laundry loads
• switched out the bedsheets
• taken out the trash
• tidied up my craft cupboard
• treated myself to a do-it-yourself facial
• updated a website
• walked the dogs
• wrapped a couple of birthday gifts
• written and mailed all my Christmas thank-you notes

… and I’m not through yet.

What a Saturday morning!

Maybe this is how the non-MS world feels all the time.

Tomorrow I’ll be tired. I’ll wonder what I was possibly thinking to go after so many projects today.

But I’ll still count it as worth the effort.

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MS means I might have the flu for DAYS without knowing it

A nasty midwinter flu is making the rounds around here, and I finally caught it. Only I didn’t realize it for a few days. Finally, once the flu was full-blown, I got the point. 

I know that sounds weird. It’s like I’m not even paying attention, right?

Only I am. But multiple sclerosis throws a wrench into the works, adding confusion to some of our most uncomfortable seasons.

It started with a headache that lasted for a few days straight. But headaches pretty much go with the MS territory for me.

A whirling vertigo spell came along next. But that’s a hallmark of MS for me.

I started feeling hot and cold and hot and cold. Again, that’s sort of standard practice for my life with MS.

Then the sneezing started, sending me honking two or three times in a row. But I get the sneezies sometimes with MS too. (Look it up. It happens.)

The all-over aches and fatigue crept in, right about then. And yes. You got it. I chalked that all up to MS too.

The idea that I might have the flu didn’t hit me for a while. I’d been overtired after not sleeping well for several weeks. My stress bucket was overflowing for a host of reasons. And the midwinter blues were blooming in full force, as the darkest months of the year brought sub-zero temperatures, beckoned blasting blizzards, held back the sun, and made staying home a whole lot easier than going out.

But, yes. Eventually I got the point. I had the flu. It just took me a while to realize what it was and stop blaming the MS MonSter.

Once I did that, I could even count back several days and figure out where I probably caught it. I’d been at a music convention, spending an entire weekend singing with hundreds of other attendees in a crowded hotel ballroom. Singing together meant breathing all over each other. Plenty of laughing, talking, and coughing were also featured. (Enter the flu.)

Two weeks later, I’m finally digging my way out of the sneezing, wheezing, hacking, sniffling, snuffling, sweating, chilling, aching mess. Soon, the flu will flown. Thank God.

Then I’ll be battling the MS MonSter better. You can bet on it.

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