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

 

Image/s:  Public domain image.

 

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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?

 

Image/s:  Adapted from public domain image. Word cloud generated by this user.

 

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Thermostat wars and MS

 

 It’s midwinter, and that means the thermostat wars are in full swing. In our house, it's one of life’s ups and downs. There may be a chill in the air, but our house is hot – way-ay too hot. And it’s turning up the heat on a daily debate.

He turns the heat up.

I turn it down. 

He turns it up. 

I turn it down.

 

You get the picture.

 I’ve explained the ins and outs of Uhthoff’s Syndrome, the medically proven perils of overheating that face those of us living with multiple sclerosis. I’ve even printed out scientific papers documenting this. I’m pretty sure I’m talking to a wall (like the wall on which our home thermostat is mounted).

 He cranks it up to the mid-70s (F). I dial it back to 68 (F). It’s endless.

 Some medical experts say 68 (F) is the ideal home temperature for someone with MS. That’s about 20 (C). 

I must admit: I’m growing a bit hot under the collar over it. (One might say it's getting out of control.)

 

Nope, I’m not nitpicking. This is a real thing.

 You could say I'm venting, and that may be true. Or possibly, I'm simply letting off steam. But MS heat intolerance is factual.

 In fact, before neurologists grew so fond of magnetic resonance imaging and lumbar punctures (spinal taps), they used to put patients into hot baths to diagnose multiple sclerosis. Those who experienced worsened symptoms in this steamy setting were tagged as MSers.

 Heat sensitivity is why MSers try not to sit near heating output vents in restaurants. It’s the reason we choose the beds farthest from the heating units in hotel rooms. It’s why we don’t find high-temperature baths, steamy saunas, and hot tubs to be particularly inviting. It also explains why we open kitchen windows while baking or cooking and why lots of us sleep with fans all year round.

 To a person with MS, a slight increase in body temperature can bring on a whole host of unpleasant symptoms. It’s a real nightmare.

 It may be difficult to help a non-MSer understand our symptoms, because these manifestations of MS frequently come and go. They are unpredictable and hard for even us to fathom sometimes.

 

We’re not making this stuff up.

 One of the curiosities of this crazy condition is the way it jumbles our own internal thermostats. We can feel hot when everyone else is cold. And vice versa. We may be peeling off sweaters, while others are reaching for their coats.

 Even so, a genuine elevation of heat (even a small one) sets the worst of MS in motion.

 

What happens when the house is too hot?

 For me (and many other MSers), my world begins to whirl (from vertigo). My vision blurs. My color perception dulls. Various body parts grow numb or pins-and-needles tingly. Fatigue attacks like a beast. Even my speech can be affected. (Some MSers experience tremors, absentmindedness or even incontinence as part of this well-known heat intolerance.)

 

It’s no fun.

 It can be a sub-zero winter day, and I’ll step outside for a moment of relief. When I cool off, the symptoms usually subside, as long as I don’t heat up again.

 

What about cold temperatures?

 Now don’t get me started about what extreme cold temperatures (or sudden temperature shifts in either direction) do to the MSer. Those days of uber-frosty air conditioning are coming, along with their own set of related MS symptoms flare-ups.

 Meanwhile, I think I’ll go check that thermostat again.

 

Related items:

·        Cooking with MS: It's all about timing

·        Life with MS: Sometimes you feel like toasting, but other times you're just toast.

·        My shower looks like a crime scene

·        Remember hot showers? Not with MS.

·        Remember when bathing didn’t make you blind?

·        With MS, a hot flash may not be a hot flash at all.

 

 Image/s: public domain photo/s

 

Feel free to follow on Twitter. Please visit my Amazon author page as well.

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