Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

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Monday

Zoning Out - Facing MS symptoms from A to Z



Yesterday, I rode in a car through a raging thunderstorm. The clouds were so low to the road that they blocked most of the visibility. The driver had to follow the brake lights of the vehicle in front of us for several miles until we had passed through the stormy area.

Cruising through the foggy stretch was disorienting and uncomfortable. It took all of the focus the driver had, just to keep our car moving forward safely and on-route. Even so, it was a struggle to focus and stay on course.



Sometimes multiple sclerosis feels sort of like that.

People call it “brain fog.” Similar symptoms can accompany other medical conditions.

Folks report attention issues, focus problems, memory challenges, and multi-tasking difficulties with chemotherapy, chronic fatigue syndrome, chronic stress, depression, exposure to toxins, long periods of physical inactivity, lupus, menopause, nutritional deficiencies, pregnancy, sleep deprivation, when taking certain medications, and during the grieving process after a loved one’s death.

Anyone can zone out a bit when overtired, overburdened, or overloaded. MS just tends to tip the scales in that direction much of the time.

Despite our earnest efforts to pay attention (especially when we’re viewing programs and presentations or when someone is speaking to us), we may zone out for a moment. We might miss a piece of something a person just said, take a few extra moments to answer a question, or forget an appointment.

Sensory overload can do that to us. So can MS fatigue, pain, or any number of other MS-related symptoms that interrupt our daily functioning and ability to concentrate.

MSers join the countless crowds who keep daily calendars, to-do lists, and other reminders, just in case they zone out. We might ask others to help us remember something important (although we cringe at the idea of inviting nagging). We set up notes on our smart phones.

And we try like heck to stay in the zone.



Note to loved ones: Beware of telling an MSer that he or she has brain fog or is zoning out. It’s much safer, more tactful, and wiser to let us tell you about it, if we feel like sharing.

Images:
Word cloud generated by Kicking MS to the Curb - All rights reserved
Series title graphic adapted from public domain artwork.



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Yuckies - Facing MS symptoms from A to Z

Multiple sclerosis can give a person the yuckies.

It’s not just that icky metallic after-taste that comes with mid-exacerbation steroid treatments. It’s not the, um, unpleasant and potentially embarrassing personal and private problems that some MSers face. And it’s more than the queasy, woozy, bluesy feeling that goes along with the nearly ever-present vertigo of MS.



MS just feels yucky a lot of the time.

“Where does it hurt?” someone might ask. We may not have specific answers (although we may).

“Are you sick again?” another might query. “Maybe it’s the flu.” But it’s probably not influenza, allergies, food poisoning, or typhoid fever. It’s just life with MS, always running in the background.

The MS yuckies are not like depression or grief. They’re more like riding a tandem bicycle and pedaling hard, while the other person is simply sitting there like dead weight. Add a significant headwind, a light rain, a bit of midsummer humidity, three or four blaring radios (tuned to different stations), a pair of fogged-up glasses, a charley horse in one leg, a too-tight belt tucked up around the rib cage, and some stomach upset – now you’re beginning to get the picture.



And, unless the MS yuckies turn into a full-blown exacerbation, then they just feel like a reasonably difficult day with MS. Sure, some of us have days when we can keep up with fit folks. But we also have times that feel … well … yucky.

Maybe we’ll bounce back again tomorrow or the next day or next week.

Images:
Word cloud generated by Kicking MS to the Curb - All rights reserved
Series title graphic adapted from public domain artwork.



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You are invited to join the Kicking MS to the Curb

Sunday

ParoXysms - Facing MS symptoms from A to Z




Extreme and unpleasant, paroxysms tend to be part and parcel of life for many folks with multiple sclerosis.



What are paroxysms? Basically, these are sudden attacks or increases of certain symptoms. Paroxysms of MS might include

  • balance problems
  • extreme fatigue
  • itching, burning, or numbness in seemingly random spots
  • lack of coordination (especially dropping things)
  • loss of bladder or bowel control
  • mood swings
  • muscle contractions
  • sharp pains (especially in the neck or back or on one side of the face)
  • spasticity
  • speech difficulties (especially slurred words)
  • swallowing problems
  • tingling or twitching
  • vision problems
  • and more.

One of the most cryptic and seemingly inexplicable paroxysmal symptoms of MS is the onset of sudden body temperature fluctuations. Somewhat similar to menopausal hot flashes (but not likely to be hormonal in nature), these make the MSer feel as if his or her internal thermostat is altogether out of whack. The person may be hot, clammy, and sweating one moment – and shivering with cold soon afterwards. This may be wholly unrelated to the actual conditions around him or her.

Often, these sudden episodes are short-lived, although that may not always be the case. Such instances may be soon repeated, or they may return at some surprise occasion. Some MSers claim paroxysmal symptoms usually herald the pending arrival of MS exacerbations.



Images:
Word cloud generated by Kicking MS to the Curb - All rights reserved
Series title graphic adapted from public domain artwork.



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Thursday

Weakness - Facing MS symptoms from A to Z



Whoa, baby. I could write the book on this multiple sclerosis symptom sometimes. Like this week! At other times, I fight the MS MonSter pretty well. (Any MSer knows this dichotomy.)

Like many MS warriors, I have had to educate friends and loved ones (as well as myself) about this weird weariness phenomenon. It’s really hard to grasp, because the proverbial bar seems to move at its own every whim.

When it hits, it's not basic fatigue. This is can-no-longer-make-your-body-work-properly weakness. It's not that we cannot lift weights. It's that we already feel like we're bogged down.



Have you ever heard of the Spoons Theory? The idea, which seems to have been formulated by Christine Miserandino, suggests each person with any number of disabilities is given a handful of spoons each day. The spoons represent personal energy. The day’s exertions (of all sorts) cost spoons. But there’s a catch: No one knows how many spoons he or she has received on any given day. At some point, they simply run out.

My MS neurologist likens this idea to an energy bank. It’s impossible to look inside and determine the current balance.

That’s what happens with MS. We can go from 50 mph to zero in nothing flat.

I wish my horse could read. I’m not even kidding! Maybe then she’d understand why some days can bring her to the barn, brush and saddle her and ride her till we’re both happy-tired and glowing. And then on other days, I am totally toast-tired within minutes of flopping into the saddle.

Often, I enjoy going to the gym to workout. I lift and press and do other weight exercises. But when MS weakness strikes, I may need to ask someone to crank open my water bottle, lift a bag of groceries, or carry a laundry basket upstairs. On the worst days, I might not even carry two empty plates across the room at once.

It’s crazy. It’s weird. And it’s wearying.


Images:
Word cloud generated by Kicking MS to the Curb - All rights reserved
Series title graphic adapted from public domain artwork.



Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.
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