MS can be a ticket to de-stress

 

Life with multiple sclerosis can be exhausting. Add the occasional (or frequent) sudden onslaught of MS-related fatigue of biblical proportions, and it’s almost unimaginable.

 High-energy people may find it difficult to empathize or understand what the MSer means, when he or she describes a titanic tiredness that saps all strength and sends energy and motivation limping away.

 Physicians may call this lassitude, and it's a hallmark of MS. It’s physical and mental weariness, a crippling sluggishness. And it can come on suddenly, seemingly without warning.

 One thing we know for sure – MS hits us the most when we are tired and stressed.

 

Maybe it’s time to let MS be our ticket to de-stress and recharge.

 Here are a few strategies for minimizing the stress that can aggravate and increase the fatigue that goes with MS (and that can leave the MSer extra vulnerable to a full-blown flare-up).

1. Clutter is confusing and chaotic. Simply clearing off a kitchen counter, putting away clean laundry, or tossing out junk mail helps remove stressors.
   

2. Multitasking can be unmanageable. Efficiency is lauded as a virtue, but too much multitasking can send our minds awhirl and our energy away.
   

3. Tackling to-do lists reduces stress. Sometimes it helps to make to-do lists and then knock off one task at a time. By listing even the smallest chores, we can gain satisfaction with each completion. At the end of the day, we can review what’s done and feel a bit of accomplishment. If MS has us homebound, sidelined, or otherwise restricted, this strategy can be extra important.
   

4. Realistic goals are our reality. Sure, we like to stretch ourselves, often past our own limits. But setting more reachable objectives can be rewarding and simplifying. The net result is often less stress. The tricky thing is, MS can change our energy resources spontaneously and unpredictability. (Ever heard of The Spoon Theory? We never know how many we’ll have in a day.)
   

5. Learning to say “no” is life-changing. Boundaries can be a new best friend to the MS warrior. They don’t come easily, because we tend to want to volunteer and participate and be active helpers. That’s one way we get worn out extra quickly, so we have to choose carefully when to say “Yes,” if someone asks.
   

6. Granting ourselves permission to rest is powerful. Stopping our self-expected activities isn’t easy. Who doesn’t want to feel productive and useful? Yet those living with MS may need more rest than those whose myelin isn’t threatened and compromised? We may need to curl up with a book, stretch out under a blanket, or even catch a catnap to regather ourselves and avoid the overdoing that can invite MS to wreak its havoc on us again.

 Self-management is tough, especially with the ever looming challenging that the MS MonSter brings to our lives. And it’s not like we want to cop out of life, escape all responsibilities, and sit idly by. But it’s critical to be deliberate about our mental and physical exertions, if we are to reduce stresses and build ourselves to battle the dreaded beast as best as we can.

 Preaching to the mirror here. I know. Remind me again … soon.

 

Related items:

• Can MS show you how strong you really are?
• Excuses: Ever played the MS card?
• Learning to plan down-days
• Life with MS: Sometimes you feel like toasting, but other times you're just toast.
• Somebody stop me. I've done too much. Again.
• Stress brings MS to excess

 

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HELP is a four-letter word with invisible illness.

Living with an invisible illness (such as multiple sclerosis, fibromyalgia, lupus, Crohn’s, chronic fatigue, or any of the variety of others) takes guts. Those of us who battle such conditions daily often seem to have a certain amount of independent spirit and spunk. That’s important, as it keeps us fighting.

 

But it also makes it tougher for us to ask for help, even when we need it.

 Consider a holiday like Thanksgiving, for example. Have you ever tried hosting a large family gathering, only to find the angry hidden beast of invisible illness attacks in a frenzy, sapping energy and making even routine daily tasks a whole lot harder?

 Maybe we’ve all been there.

 Or perhaps the occasion isn’t marked by a full-scale exacerbation, and we feel pretty good. So we do and overdo. We work and overwork. We keep going and going and going.

 

Eventually we run out of gas, even if it’s the next day.

 Again we chastise ourselves, “Why didn’t I ask for help?”

 And we know it’s because “help” is a four-letter word with invisible illness. We are reluctant to enlist assistance. We may even reject help when it’s offered, claiming we can do it ourselves. We might have pleaded for help before and been denied, so we’ve stopped asking.

 

Color me thankful today.

 A few members of my own family have really clued in lately, especially in the past year or so. After a long time of relatively smooth sailing (as far as MS is concerned), I started experiencing a ramping up of some difficult symptoms. My energy and activity levels dropped dramatically. Like any other invisible illness battler, I wanted to keep on doing life in all the ways I always had.

 For years, I’d been like the Little Red Hen in the well-known children’s story, offering to do it all myself.

 But how refreshing it was to find these special people stepping in and stepping up. This year, they insisted on coming over and cooking Thanksgiving dinner – right in my house. Sure, I did some assisting, but they did all of the heavy lifting, proverbially and practically speaking. It was amazing, and we all had a blast, sharing my little kitchen to pull the whole thing together.

 Maybe I should have invited such help long before now. But you know, “help” is a four-letter word with invisible illness. We hate to ask.

 

Related items:

• Cooking with MS: It's all about timing
• Hold on! Having MS, I'm thankful for ...
• How do you manage MS for the holiday season?
• Learning to plan down-days
• Mama’s not faking … or bellyaching.
• Should you tell people you have MS?
• What if a spouse urges an MSer to file for disability?
• Who goes with you to your MS appointments?

 

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MS comorbidities: Welcome to the party!

 Multiple sclerosis is a wacky disease. Ask anyone battling it. The constellation of possible MS symptoms is baffling to contemplate. Experientially, MS brings a host of surprises, as the MSer’s body seems to betray him or her in all sorts of surprising (and seemingly unrelated) ways. 

 

 Vision disturbances can crop up. A limb may go numb for a while or longer. Incontinence may sink in. Spasticity might strike. Walking can become difficult. Vertigo could stop by for a spin. Fatigue might suddenly become overwhelming.

Once diagnosed, we find it’s easy to blame all sorts of health complaints on MS. On the other hand, MSers can be prone to several other illnesses and complications. That’s called comorbidity.

 

What are the most frequently found comorbidities with MS?

Here’s a garden variety:

• anxiety
• arthritis
• asthmatic bronchitis
• cardiovascular disease
• chronic lung disease
• cognitive/memory issues
• deep vein thrombosis
• depression
• diabetes
• high cholesterol
• inflammatory bowel disease
• migraines
  
• obesity
• psoriasis
• sleep issues
• stroke
• thyroid disorders
• urinary tract infections
• and more.

 In many instances, medical experts aren’t altogether sure whether MS causes a certain comorbidity or vice-versa. For example, MS can cause a person to live a more sedentary lifestyle, which could lead to (or aggravate) blood pressure issues, diabetes, heart or lung disease, obesity, and other ailments.

 Additionally, comorbidities may arise together, perhaps randomly. And lots of medical conditions share symptoms, so it may be difficult to pinpoint whether a symptom stems from MS or from an existing comorbidity. 

Comorbidities can also delay and complicate a person’s initial diagnosis of MS, as symptoms of other conditions may mask MS’ appearance. They can also make MS treatment more difficult to manage and may even set the stage for MS to progress faster in some patients.

 It’s a crazy world out there, especially with the less-than-pleasant bonus of comorbidities with MS.

Related items:

• Ain't nothin' pseudo about a pseudo-exacerbation.
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• Managing chronic illness can mean redefining goals.
• Maybe MS has taught me something, after all.
• MS is like the cancellation disease.

 

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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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Self-advocacy: When therapy is not therapeutic

 

Multiple sclerosis pits a person against his or her own body – and sometimes against medical experts.

 Ask any of us who battle MS daily, and you’ll likely hear about how our own bodies betray us, as our central nervous systems mutiny against our limbs, eyes, and countless other components. Maybe that’s why it seems extra frustrating when we have to combat false assumptions and unhelpful advice, particularly when it comes from medical professionals we have enlisted to help us.

 

Ouch.

 Recently, my physician sent me for vestibular therapy, explaining that my recurrent (and increasingly severe) vertigo episodes might be traced to benign paroxysmal positional vertigo. Simply described, that’s a condition that arises when inner-ear crystals slip out of place, causing dizziness.

 

That’s not what’s caused my vertigo.

 More than a decade ago, my (now-retired) neurologist/MS specialist attempted the Epley Maneuver on me, simply to rule out BPPV. This little trick involved lying flat (supine) on the exam table, while the practitioner bends and turns my head to one side and then the other.

 

The Epley Maneuver can work wonders for someone with BPPV. But for the MSer, it can wreak havoc.

 Way back when (and again recently), this technique sent me spiraling into vertigo hell for hours.

 

Fast-forward to last week.

 The young physical therapist, apparently specializing in vestibular issues, put me through a full battery of balancing, rolling, and head-turning trials. She set me supine on the flat exam table and tipped the top (head) section downwards by 30 degrees. Adapting the popular 1-10 pain scale, my vertigo went from a 3 to an 8.

 In our initial discussion, I had already explained to her that I needed to elevate my head at least 30 degrees whenever on my back (as for an exam, fitness class floor exercises, or a yoga class). I mentioned that I sleep with two pillows. All of these allowances are vertigo-preventative, as I have demyelination in my cervical spine area.

 Ever determined, however, she put me through the paces.

 Then she concluded that my vertigo was not vestibular-related, but only after I’d endured her full checklist of tests and potentially therapeutic head positions and movements. Even so, she said she recommended repeating the same exercises, intentionally precipitating vertigo, on the chance that might retrain my brain to adjust to vertigo.

 

Um, what?

 Afterwards, I contacted my physician and reported on the experience. I told him I was not inclined (no pun intended) to continue the vestibular therapy, as it only triggered and increased my symptoms and as my vertigo clearly was not vestibular in nature.

 Holy moley. My head is still spinning over this ordeal. But I had to find my way to standing on my own two feet (literally and figuratively) to avert repeat occurrences.

 Phew! They don’t call us MS Warriors for nothing. (At least, perhaps they should.)

 

Related items:

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• MS is like a carnival thrill ride without the thrill
• MS makes me wanna cheer anyone struggling to exercise
• Simple product helps vertigo?
• Who goes with you to your MS appointments?

 

Image/s: 3 Wise Monkeys at Tosho-gu Shrine, Nikko, Japan, by Ray in Manila - CCA lic.

 

 

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MS episode: Is it a relapse, a new lesion, or what?

 

“So you don’t have MS anymore?” a close friend asked, after my latest scans showed no new changes.

 Not long after that, one-eye blurriness and various limb tingling and dizziness suddenly hit me. The MonSter of multiple sclerosis reared his angry head again.

 “We’re not making this up, folks. Even if we do look too good to be sick.” (Raise your hand, if you’ve heard that one.)

 

All together now:  The absence of new lesions doesn’t mean MS has vanished.

 It’s probably an exacerbation. Or it might be a paroxysm. Let’s hope for that one, as it won’t likely last as long. But then, all bets are off, when it comes to the mysterious MS.

 An exacerbation of MS (also known as a relapse, attack or flare-up) is the occurrence of new symptoms or the worsening of old symptoms, according to the National MS Society. Their explanation elaborates on this definition by saying this: “To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. It must also occur in the absence of infection, or other cause. Most exacerbations last from a few days to several weeks or even months.”

 But MSers can also experience something called paroxysms, which are sudden recurrences of spasms, seizures, or other MS symptoms. A frequent example is known as Uhthoff Phenomenon (or Uhthoff Sign or Uhthoff Syndrome), which occurs when overheating (especially a rise in the core body temperature) triggers the MSer’s symptoms, usually until that person is able to cool off. (This is why many MSers choose to wear cooling scarves or vests during hot weather.)

 

Neither an exacerbation nor a parosysmal episode necessarily points to the appearance of new lesions (scarring) in the MSer’s central nervous system.

 Sometimes that’s the case, but the conditions of living with multiple sclerosis often mean that existing damage can already cause reoccurring episodes.

 People who don’t have multiple sclerosis or who are not well-versed in the nature of this chronic condition may struggle to understand this concept.

 

My own primary care physician is a prime example of this type of misunderstanding.

 Recently, I visited my general doc for a basic routine physical, but I also expressed some (likely MS-related) symptomatic complaints. He ordered a brain MRI. It came back as stable and unchanged.

 “Your symptoms aren’t from MS,” he concluded confidently, “because you have no new lesions.” Then he ordered additional non-MS-related testing to address the symptoms.

 No MSer will be surprised to find that the additional testing led nowhere. Clearly, MS was causing the symptoms, which I’d experienced many times before during MS flare-ups.

 

Family members and friends can also be confused by the no-new-lesion concept.

 Yes, any MSer rejoices when a scan shows no new lesions. We love finding no additional CNS damage. At the same time, this doesn’t mean we no longer experience relapse-remitting or ongoing symptoms. It doesn’t promise that our proven triggers can't also set these misfires into motion.

 

 Sure, it’s confusing. Try living it.

 I’m not a doctor, but I play one in my own very-real life. If you’re an MSer, you probably know the feeling.

 

Related items:

• Can't I just blame it all on MS?
• Feet? Feet? Where are my feet?
• MS has made me more body-conscious.
• MS symptoms fire when we’re sick.
• With MS, a hot flash may not be a hot flash at all.

 

 Image/s: Adapted from public domain image/s.

 

 

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You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

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

 

 Image/s: Adapted from public domain image/s.

 

 

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MS makes me wanna cheer anyone struggling to exercise

The gym is sort of a microcosm of society. At least, ours is. I’ve met some of the kindest folks ever at the gym, but I’ve seen plenty of pettiness and a smattering of mean-spiritedness too. Hey, it happens.

Yesterday presented a prime example.

A bunch of us were gathering in one of the workout studios, waiting for exercise class to begin. As we chose our weights, we glanced through a bank of windows, overlooking the lap pool. The lifeguard was chatting with a resting swimmer in one corner. Another swimmer was slogging along in a center lane.

This lady swam so sluggishly that it seemed she was making her way through molasses. Seriously. But she persisted, creeping along in some semblance of the freestyle (crawl) stroke. She barely lifted her right arm out of the water. She dragged her legs along in almost a vertical position.

“Look how slow that lady is!” one onlooker exclaimed.

“Do you think she’s alright?” another asked.

We continued to watch for a few moments, as we stood and stretched a bit to prepare for our own routine. And the swimmer kept going, stroke after agonizing stroke.

“Maybe she has MS,” one of my cohorts suggested.

“Like me,” I said.

Then a familiar thought hit me like a typhoon, as it so often does.

I have no idea if that swimming lady has MS. But that might have been me.

I could be the swimmer who barely makes it to the end of each swimming lap (if I even climb into the pool). I could be the runner who stumbles across the finish line, fully spent. I could be the lady in the wheelchair, who cannot walk independently.

When I remember this, I become more mindful. I realize, once again, that I am grateful for every step I can take. I appreciate that I can even get to the gym and join a workout class. Living with multiple sclerosis, I know my days could be very different than they are.

And I salute the struggling swimmer in the pool – because she is in the pool. She’s out there getting it done, no matter how long it takes her. It doesn’t matter that her swimming is labored and painfully slow. She is faster than anyone who didn’t put on a Speedo that day.

Points for playing, girlfriend!

Remember middle school, when kids mocked those who weren’t so good in gym class?

I surely do! If a kid couldn’t hit the baseball, run a fast 50-yard dash, or shoot a goal in floor hockey, that kid instantly became joke fodder. And if someone accidentally scored a point for the opposing team, it was all over – as in all over the school.

I know. I’ve been there. I was that kid.

And I’m not laughing. I am cheering, especially for the underdogs, who underneath are the genuine champions.

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