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)


Heading off three midnight medication mistakes

No one likes getting out of bed in the middle of the night to take medication, but sometimes this simply cannot be avoided. It can be a necessary evil, especially for anyone living with the troublesome symptoms that often come with a chronic medical condition like multiple sclerosis. At such times, however, it’s easy to make a mistake that can lead to even bigger headaches or health problems.

Not long ago, I woke up with a pounding headache in the wee hours of the night. I staggered into the bathroom, opened the medicine cabinet, and reached for the ibuprofen bottle. But I took two off-brand Excedrin. Oops! Each tablet contains 65 mg of caffeine. The headache improved, but I was pretty much awake for the day at that point. And I was dragging for the whole day.

Consider these three common midnight medication mistakes and how they might be prevented.

1. Taking the wrong medication

This is a very common error. It’s particularly easy to make this mistake when buying generic or store-brand over-the-counter medications or prescription drugs. The bottles look pretty much the same.

Sure, tablets or capsules may differ in shape or color, but that can be sort of hard to tell when one is fumbling in the dark or a dim nightlight with bleary half-awake vision.

Here’s a quick fix. Why not write on medication containers in large letters with a permanent marker?

2. Taking the wrong dosages of medication

It’s easy to forget how many tablets to take, when one rises for relief medications in the middle of the night. Is it two antihistamines or one? How many ounces of cough syrup? And is it every four hours or every six? At what time was the last dose?

Placing a little notepad or small spiral notebook and a pen in the medicine cabinet or by the nightstand can be a lifesaver – perhaps literally AND figuratively.

3. Taking the right medication wrongly

Certain medicines must be taken with extra water. Others should be accompanied by food. Still more cannot be taken along with other drugs. This is important to know – and to know well – before a midnight crisis arises.

And what happens if one takes Tylenol (acetaminophen) along with a multi-symptom cold or allergy medication that already contains the same ingredient?

Again, simply handwriting such warnings with a permanent marker can offer on-the-spot reminders of such details.

These tips are ideal for preventing overnight mistakes with medications that are taken only on an as-needed basis. For medications taken regularly, a daily pill dispenser can be handy. In our family, we call it the “smutwoofs,” which is a silly play on words for the letters that mark each day’s compartment (S-M-T-W-T-F-S).

 Public domain artwork

Feel free to follow on Google Plus and Twitter.  You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest as well.


15 things never to say to anyone with multiple sclerosis

Individuals living with multiple sclerosis battle all sorts of symptoms, but perhaps one of the most frustrating aspects of this serious medical condition can be the misdirected (or even unwittingly mean) comments lobbed by those who simply do not understand MS at all.

MS is a chronic, potentially progressively disabling condition affecting the central nervous system. So far, no cure exists. MS has been called an invisible disease, because it may be difficult for onlookers to perceive that a person is actually sick. What’s more, a person battling MS may seem particularly capable one day and be altogether wiped out the next. It’s unpredictable, uncanny, and unfathomable sometimes.

Perhaps that’s why many people seem to be dumbfounded, confused, or simply clueless about what to say to someone with MS. Even the most well-meaning individuals can trample the boundaries of appropriateness, leading to awkwardness, hurt, or potential ill will.

What are the worst comments folks may make, while talking with MSers?

Here are 15 things it’s better not to say to anyone with MS.

Perhaps surprisingly, people have actually come out with these zingers. Trust me on that one. I’ve heard ‘em all (or statements like them). Maybe you’ve heard some of these as well.

  1. “You were fine yesterday. I saw you biking (or climbing stairs, running, skiing, water-skiing, or whatever).”
  2. “Well, stand back. Don’t give it to me!”
  3. “You should give up diet soda (or fast food, prepared foods, gluten, red meat, or whatever).”
  4. “You just need a little exercise. That’ll take care of your stiffness, aches, and fatigue.”
  5. “Have you tried meditation (or dietary changes, herbal remedies, massage therapy, yoga, or whatever)?”
  6. “At least you don’t have cancer. Did you hear who just died from that?”
  7. “But you look so good. You don’t look sick at all.”
  8. “You have MS? My Aunt Betty’s next-door neighbor’s second cousin died from that.”
  9. “Are you taking your meds?”
  10. “You really need to get out more. Let’s go shopping (or to the amusement park, downtown, or another loud, crowded place).”
  11. “Haven’t they found a cure for MS yet?”
  12. “You should do the MS run (or bike or swim or whatever).”
  13. “I know just how you feel. I have rheumatoid arthritis (or allergies, arthritis, bunions, insomnia, or whatever).”
  14. “It’s OK. You’ll feel much better tomorrow.”
  15. “So why aren’t you in a wheelchair?”

And possibly, many of these comments apply to other invisible diseases besides MS. These might include asthma, chronic fatigue syndrome, celiac disease, Crohn’s, epilepsy, fibromyalgia, IBS, lupus, lyme disease, narcolepsy, and many more conditions which can be hard for onlookers to recognize outright.

Generally, pat answers don’t fit. Snap judgments aren’t the ticket. And unsolicited advice pretty much slams the long-time expensive medical advice, treatments, therapies, and personal effort most MSers have already invested in battling the dreaded MS MonSter. If it were that easy, we probably would already have tried it.

Compassion and understanding are key, even if the right words evade those who care.

 Public domain artwork

Feel free to follow on Google Plus and Twitter.  You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest as well.


Is pain in vain or just a drain?

I like to say I’m kicking MS to the curb, and often that seems to feel pretty appropriate. But the temptation to take credit for small victories is very real – until something trips me up, and I hurt in the ways only fellow MSers can fully understand. I reel. I stumble. I fall flat. I ache. I go numb in random places. I feel sudden jabs of crazy agony that come and go with a mind of their own. And I face a host of other multiple sclerosis medical oddities, nuisances, and (yes) pain.

Maybe you know the feeling.

The past month has been a spot-on example of this for me. As earlier posts recounted, I tumbled in a recent trail event and broke my arm/wrist in a couple of spots. During the same stretch of time, I had a positive biopsy, which led to an outpatient surgery.  And my neuro ordered a CNS CT scan, which had to be tabled (pun intended) when the radiology tech insisted I’d need a contrast dye injection to which I am anaphylactically allergic.

(Trust me: I’ve been down that road before, and it wasn’t pretty.)


Enough of the self-serving organ recital. I could go on, but I’ll leave it right there. If you live with MS, you know the drill.  Let’s just say stuff hurts.

The point is pain.

Pain drains us. It saps our strength, commands our energies, and dares to drag our dispositions into the dumps. But it can also be a compass reset, especially when we are racing along merrily in seemingly self-sufficient overdrive.

The Chronicles of Narnia author and renowned Christian theologian C.S. Lewis (1898-1963), who also wrote The Problem of Pain, said this about suffering: 

“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”

I’m not deaf, at least not in the physical sense. I’ve been blind (from MS), but not deaf. Still, I can be deaf in the figurative sense. Or my noisy life can drown out the most important voice of all.

See, that’s the gift I’ve found from living with a chronic and often unpleasant medical condition.

I’m not happy about having M.S. But I am grateful for the ways a merciful God meets me in moments of agony or distress to offer company and comfort and consolation. I am thankful for His much-needed reminder that every breath and every heartbeat and every step comes from His grace (for MSers and non-MSers alike).

Because without pain, I might just think I’m too busy and too strong and too invincible to notice my own need or to hear His answer. And, if anyone understands pain, He surely does.

Here’s another thing about pain. It can also alert us to the suffering others face, which is almost always worse than our own. (Checkpoint needed.)

Follow-up:  The arm is healing. The cast has been replaced by a removable brace.  I can wash both my hands and even wear a winter jacket again. The (ouch!) physical therapy part of the process has begun. I can almost type with both hands. The cancer surgery seems to have gotten it all. And the headache medicine is beginning to work again.

Best of all, although I’ve been slugging it out (one-handed) with the MS MonSter throughout the holiday season and well into the midwinter mopes, I should be up and running in no time, instead of simply climbing the walls. OK, maybe a month.

Pain isn’t always permanent, thank God.
 Public domain artwork

Feel free to follow on Google Plus and Twitter.  You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest as well.
Related Posts Plugin for WordPress, Blogger...