16 simple tips for hosting guests while battling MS

 

Living with multiple sclerosis can be stressful enough by itself, and the idea of hosting company may feel like the proverbial last straw. Maybe that’s why MSers might be reluctant even to offer. And that’s not unreasonable, considering how suddenly a flare-up can sideline us. It’s hard to commit to taking on extra tasks or responsibilities when we cannot predict when or how quickly our bodies will betray us without warning.

 At the same time, anyone with a long-term and potentially debilitating medical condition can quickly feel lonely, isolated, and out of touch with others. We may even sense that it’s our turn to have the family, circle or friends, or office mates over for a luncheon, cocktail party, barbecue, or other gathering.

 

 What can the MSer do to de-stress the prospect of hosting guests? Here are several suggestions. Maybe you can add more (in the comments). 

1. Choose a date that fits easily into your own schedule. Try to keep your calendar clearer than usual right before and after the event.
2. Plan to host during your best part of the day, when your own energy is likely to be at its strongest.
3. Invite another person to co-host, if that works with your guest list.
4. Keep the menu simple. There’s a reason potlucks are so popular.
5. Look into catering and take-out options, if those could fit the bill.
6. Complete as much of the food preparation in the days leading up to the event, so you can pace yourself. Consider what items you might make and freeze in advance.
7. Try to get plenty of rest ahead of the event, including an early bedtime the night before.
8. Check the thermostat in your home. Turning it down a notch or two may help to prevent you from overheating, especially with extra people around generating extra heat and excitement. We all know what heating up does to MSers.
9. Be sure to take your regular medications. You might even take your rescue medication, just in case, if you are concerned about sudden symptoms (like a headache, GI issue, or anxiety attack) cropping up.
10. Pick out a no-fuss comfortable outfit to wear for the occasion.
11. Go barefoot (in your own home) or in your stocking feet. Or at least, wear comfy no-slip shoes.
12. Step away for mini-breaks, as needed, after guests have arrived. Even an extra restroom break or a moment in the garage or fresh air can help you to relax a moment and clear your head.
13. Allow guests to pitch in and help, especially if they offer. Don’t try to do it all alone.
14. Remember to drink plenty of water and to eat something, instead of simply serving others. Hunger and dehydration are no-no’s for anyone, but particular for MSers.
15. Avoid the alcohol and any food triggers you might have while you are hosting. (For example, chocolate can be a migraine trigger. High-fiber foods can set off any GI issues, common to MSers.)
16. Sit down whenever you can. Let the dirty dishes pile up in the kitchen sink, while you take a breather and enjoy your guests.

 If the idea of hosting company (even family) in your own home still sounds overwhelming, remember this mantra: 

Go out to eat instead.

 You can always put out the proverbial welcome mat without actually having people come into your home.

 Dining out usually costs a bit more than having a meal at home. But it may be worth it. And you can always ask for separate checks, if that seems appropriate with the present company. After all, the main point is gathering with colleagues, friends, or loved ones. It’s probably more about the people than the venue.

 

Hosting guests is a treat. But it shouldn’t have to be a trigger to an MS exacerbation.

  

Related items:

·        Despite MS, sometimes we just have to take it to the limit

·        Learning to plan down-days

·        Managing chronic illness can mean redefining goals

·        MS comorbidities: Welcome to the party!

·        MS is like the cancellation disease.

·        That’s not the kind of hug anybody really wants

 

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Can infirmity be a blessing?

 

I met a woman in a wheelchair yesterday. And she’s a miracle. Her cheerful attitude and upbeat outlook inspired me more than I knew I needed.

 

 This lady was diagnosed with multiple sclerosis almost 50 years ago. She’s battled the beast ever since.

 MS research has come a long way in the past five decades. Back then, when this dear new friend was diagnosed, doctors had very little to offer her. None of today’s disease-modifying treatments were available. Physicians could only address some of the MS symptoms, as they arose.

 This sweet lady is basically bedridden. Her husband, recently retired from a lifelong career, cares for her daily needs and more. He’s a marvel.

 

 The two of them came out to address a monthly fellowship group to which I belong. Their appearance required herculean efforts on both their parts. They said they rose at 6 am to prepare for the event. They said she almost never leaves their home.)

 As they spoke, recounting their story, sheer joy fairly seeped from their pores. He said it was the greatest blessing of his life to care for his beloved wife, feeding and dressing and assisting her in every way. She sang his praises as well. Honestly, they were adorable.

 After their brief presentation, I was able to slip across the room and introduce myself to her. I leaned down by her and told her I shared the same diagnosis. She looked up at me with a contagious smile and a light in her eyes. Yes, despite her physical limitations, this woman jumped at the opportunity to encourage someone else.

 I thanked her for coming and said I hoped she would not be overly exhausted by the effort.

 “Honey,” she answered. “I’ll be done in tomorrow, but it’s worth it.”

 Seriously, I’d been feeling a little cranky that morning. I’d had a few unexpected inconveniences that cluttered my progress before the meeting. I arrived just in the nick of time, struggling a bit to show up with a chipper attitude.

 

Boy, was I missing something!

 Then I heard this lovely couple’s story.

 I do not know why MS has crippled her and left me still standing with nearly full physical faculties. I cannot explain why she is restricted to her bed and sometimes her wheelchair, while I'm out hiking and biking and participating in nearly every activity I choose.

 People often tell me I’m staving off MS with all of my exercising. They claim to be astounded when I run a race or log the year’s number in annual miles. Sure, pursuing physical fitness can make us healthy in all sort of ways. But MS can still sideline anyone, seemingly randomly, no matter how much we try to fight it.

 Other claim that a solid faith can keep MS at bay. I believe in faith. But I also know extremely faith-filled people (like my new friend) who have been attacked viciously by MS. And my faith seems feeble next to hers (if it’s even fair to compare). I know God is able to heal and sustain anybody. But I cannot begin to understand why some still struggle immeasurably, while others seem to face simpler challenges.

 I cannot tell you why MS boxes in some people and allows others to keep on going in all sorts of physical ways.

 But I can earnestly tell you that this dear lady is still going strong, even if it’s from her own bed. And I am both impressed and inspired.

 That’s hope.

 I don’t know if infirmity can be a blessing. But she surely is.

 

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• Tuning in sometimes clears the clutter for an MSer
• You have MS? I know someone who has that.

 

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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:

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• 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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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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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.

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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