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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Somebody stop me. I've done too much. Again.

Yikes. It’s only the first day of December, and I am already overspent. I’m not even talking about the checking account. It’s my energy bank.

(If you live with multiple sclerosis, you know exactly what that means.)

I’m overdrawn.

• Maybe it’s because I have run (at least 3-4 miles a day and often more) on seven of the past ten days.
• Cooking and hosting Thanksgiving this year, and then spending the rest of that weekend pulling out and putting up holiday decorations is likely another contributing factor.
• Darting about town to do a bunch of extra errands for holiday shopping and craft supplies could have drawn me down a bit too.
• Constructing and sewing seven children’s toys for Christmas might have something to do with the spasms my back is now feeling.
• Wrapping presents for a couple dozen extended family members took some wherewithal as well.
• Participating in out-of-the-house evening events on three of the past four nights may bear some blame – even though all of these were fun, and I wouldn’t have missed them.
• Looking forward to going out for hearty holiday happenings on three of the next four nights might play a part.
• Did I mention I had to play a little catch-up to meet my end-of-month writing quotas?

Are you getting tired, just reading all that?

Please don’t misunderstand. None of these are negatives. I willingly signed on for all of these endeavors and actually enjoyed doing them.

I love the Christmas season.

But I’m a little spent.

That’s how MS works. It’s an up-and-down, back-and-forth, give-and-take sort of life. It’s nearly impossible to predict how much energy will be available on any given day, but we know we are supposed to manage that resource wisely and try not to run out before the end of each day.

Only it doesn’t always work that way. Especially during the holiday season, when so much fun is there to be had.

I think it’s time to pull back from the front lines and plug into the things that recharge me – at least for an hour or two.

Know the feeling?

I’ll be back, once I get my gusto restored.

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 Koala in Tree - Pixabay

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Thanksgiving Greetings 2015 from Kicking MS to the Curb

Happy Thanksgiving to all US readers, and goodwill to all. Even with MS, we have many reasons for gratitude. Personally, I find the dreaded MS MonSter actually stands as a reminder for appreciation of every step I am able to take, every activity I am able to continue, and every moment that is relatively pain-free. I no longer take those experiences for granted.

Hope you enjoy a peaceful and pleasant Thanksgiving with your own loved ones.

I am grateful for much - not the least, the opportunity to share fabulous food with beloved family members. I plan to dig in heartily, but I hope to avoid any MS-migraine-inducing MSG-filled items and to pace myself to avert a holiday-overload energy crash. Who's with me on that?

Do you have an MS-related New Year’s Resolution?

Happy New Year, MSers and friends. Who’s making New Year’s Resolutions? And do they have anything to do with living and coping with multiple sclerosis?

Hey, if you battle the MonSter daily, then pretty much everything you do has something to do with MS.

With this idea in mind, I asked several MSers about New Year’s Resolutions. Here are some of the answers I received.

1. Brandy, of Idaho, opted to “decrease the inflammatory foods and exercise/yoga 3 times a week.” She also indicated she planned to create a new fitness/motivation-oriented Facebook group in 2015.

2. Diane, of Massachusetts, claimed this admirable goal: “to exercise and make myself stronger.”

3. Eddie, of Pennsylvania, made a dietary resolution. “I’ve gotta stop eating or drinking anything with artificial sweeteners or lots of preservatives,” he said.

4. Kat, of New York, replied thusly: “This year I need to remember to take advantage of the days I feel good! And to move more.”

5. Katie, of Rhode Island, said, “I am making a resolution to learn how to say no. Overdoing things for others is my downfall. I need to take care of myself first for a change.”

6. Lisa, of Minnesota, pointed to stress reduction for 2015. “I am looking for ways to cut out stuff that causes extra anxiety and frustration, which only add to MS flare-ups,” she attested.

7. Maizie, of Colorado, valued vitamins and good nutrition. “I’m gonna try to remember to take my Vitamin D and eat well all year. That’s harder than it sounds.”

8. Patty, of West Virginia, piped up about exercise. She said, “My New Year’s Resolution is to walk at least 7 miles each week, if I can swing it.”

9. Ricky, of Kansas, answered this way: “I promise I will do what my Neuro and wife tells me to and not do more than MS will allow me to do. Ok I'll try to do a little better.”

10. Robin, of Florida, indicated she planned “to sleep in more.”

 

11. William, of Oregon, said, “I hope to stop using MS drugs. The side effects are annoying.”

12. Yvette, of Arizona, claimed a New Year’s resolution aimed at her career. “I am looking for a job that actually stays within the regular work week, instead of adding tons of unpaid and exhausting overtime,” she replied.

What is your MS-related New Year’s Resolution this time around?

Image/s:

Created by this user,

including adapted public domain artwork

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How do you manage MS for the holiday season?

Here’s an equation every MSer knows all too well:

Stress + Fatigue = Likely MS flare-up

Ugh! We get it.

The holiday season is filled with excitement and festivities and tons of activity. It’s filled with baking and crafting and shopping and wrapping and reveling. It’s filled with family delights … and maybe some family drama.

And the December calendar overflows, although our energy levels may not. As anyone living with multiple sclerosis knows, the energy bank account can be immediately and unexpectedly overdrawn. We can go from enthusiasm to inertia, full to empty, and plugged in to zapped in a heartbeat.

Geez. I love the holiday season. But I can almost feel the vision in one eye blurring and the same old head-spinning vertigo setting in – just at the thought.
And my right ankle is tingling again. (I am not even kidding.)

How do you minimize MS symptom overload during the busy holiday season?

This takes a conscious and deliberate effort. Like a determined accountant, counting every expenditure, we carefully evaluate each errand, project, and invitation before committing.

Sometimes holiday invitations are no picnic for an MSer.

Sure, it’s lovely to be asked to a seasonal fete. But juggling a bunch of social and volunteer commitments during the holiday season can be daunting for anyone with multiple sclerosis. Let’s say it again: fatigue and stress are troubling with MS. The appointment book takes some smart management for anyone with a chronic medical condition.

Even when we do accept a task or decide to participate in a holiday season event, we often choose to take it in smaller pieces. Perhaps we linger only a short time at a boisterous Christmas party. Maybe we offer to help pass a few appetizers, but we bow out of the after-party cleanup. It isn’t that we aren’t willing to pitch in. It’s just that we can pretty much count on being wiped out afterwards.

If we are smart, we will try to clear the calendar for the day after a big party, a long holiday concert, or a whirlwind Christmas shopping trip. We know we will likely need to re-gather our energies and faculties afterwards.

Is holiday shopping a pleasure, a panic, or a pain for the MSer?

And, to be honest, we may benefit from reining in long, drawn-out holiday gift hunting in the first place. Many of us make lists and pick out the lion’s share of gifts online or in mail-order catalogs and have presents sent directly to recipients, whenever possible. Hey, all those holiday season free shipping offers are a big plus!

Here’s another help. Why not take someone along for holiday shopping? Another driver, merchandise browser and sorter, gift list checker, shopping cart pusher, and post-purchase bag carrier can be a big plus.

Are holiday crafts a stress buster, or do they foster MS flare-ups?

Lots of MSers, like other folks, enjoy making crafts for the holiday season. Maybe we started working on Christmas projects back in July. If not, will making handcrafted décor and gifts end up costing us plenty in last-minute holiday fatigue and stress?

As for holiday decorating, those pre-lit artificial Christmas trees really do simplify things a lot. 

What about wrapping?

MS can wreak havoc on once-nimble fingers, which used to make fancy and neat gift wrapping a snap. Gift bags to the rescue, especially for local giving!

Hosting holiday events takes some self-protecting savvy for the MSer.

Maybe we bake two or three kinds of holiday treats, instead of the 10 or 12 we used to make. We might even choose to whip up a few batches of delicious bars, rather than the labor-intensive rolled cut-out cookies we made in our pre-MS days.

If it’s our turns to host the holiday gatherings, more than a few of us will allow others to bring dishes. We may opt for simpler menus, including items we can prepare ahead of time, rather than on-the-spot heavy prep fare. We might serve a buffet, rather than a multi-course plated meal, which requires lots of table serving and clearing.

When it comes to living with multiple sclerosis, it’s all about managing our energy levels and staving off extra stress. Aren’t fatigue and stress the MonSter’s primary food groups?

Image/s:

Created by this user,

including adapted public domain artwork

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