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

Just in case: 10 top items to pack for a hospital stay




Hospital stays may be planned or sudden for illness or injury. This is not uncommon for anyone battling multiple sclerosis or another chronic medical condition. A sudden trip to the hospital emergency room can instantly turn into a hospital admission. What essential items might a patient want to have on hand?

Once admitted into the hospital, a patient may find that his or her personal belongings have been bagged and catalogued. In the hospital room, the patient will likely receive the standard-issue open-backed hospital gown. Perhaps a pair of drawstring-waist hospital scrub pants and a thin wrap robe will be included. A nurse or hospital staffer may offer a pair of knit socks with rubbery skid protectors on the soles.

A private or semi-private hospital room may include a bathroom, where soap and a new toothbrush may or may not be found.

Hospital physicians, nurses and other staffers may begin asking the patient countless questions about medical history and care providers. They will likely bombard him or her with mountains of information about the current condition as well. How can a hospital patient keep all of this information organized, if he or she has arrived at the hospital empty-handed?


Adapted by this user from ABSFreePic public domain image.

How can a person prepare ahead of time for an unforeseen hospital admission?

Ideally, the prospective patient grabs the most important items before embarking on a trip to the hospital. Expectant mothers, for example, tend to excel at this sort of planning, stashing these goods in duffel bags, suitcases, or totes and placing them on-the-ready for the big day. Surgical patients with long-standing appointments may be particularly well prepared as well. When a hospital admission is planned, the process is certainly more straightforward.

Even in an emergency, however, it may be possible to grab the most critical personal items before rushing to the hospital. In the very least, it can help to have a list ready, so one can send a friend or family member to pick these up after patient admission to the hospital.

Many of these essential hospital stay items may be purchased in small, travel-sized versions and set aside for a prescheduled in-patient session or just in case.

NOTE: Written by this author, this copyrighted material originally appeared on another publisher’s site. That site no longer exists. This author holds all rights to this content. No republication is allowed without permission.

What are the top 10 personal supplies to have on hand, just in case one might be admitted to the hospital?

Here are the top ten personal supplies to have ready for just such an occasion.

1. Personal care items

An extra toiletries case, a small cosmetics tote, or even a zippered plastic bag may be filled with basic personal care items and stowed for any hospital stay. The bare essentials might include a toothbrush, a small tube of toothpaste, antiperspirant, soap, lotion, disposable razor, brush, and comb. A woman might tuck in a small lipstick, concealer stick, blush, and mascara.

Contact lenses, eyeglasses, hearing aids (with extra batteries), and dentures are musts for those who use them.

Also, hospitals are supposed to be extra clean, but germs are always possible. A tub of antibacterial wipes can be super handy for wiping hands, bed and wall railings, door handles and knobs, TV remotes, and other spots frequently touched by others.

2. Medical information

A current medical insurance card is pretty much a given for a hospital stay. In addition, many individuals maintain lists of their medical providers (including specialists, surgeons, chiropractors, dentists, and others) in a computerized address list or document file. It’s a great idea to keep a printout in a hospital stay bag or to have this information recorded in a note on one’s smart phone or tablet (and give a trusted individual the password, in case one might be unconscious or incapacitated in an emergency). This information will prove invaluable, should one be admitted to the hospital, particularly without warning.

3. Medications list

Any hospital stay bag must include a list of all of the medications one currently takes. This document should list every prescription, each over-the-counter medicine, and all vitamins and dietary supplements. Correct dosages for all items must be noted. Be sure to include a list of any food, environmental or medical allergies. Hospital professionals need to know if the patient reacts adversely to codeine, latex, penicillin, or other contents.

This information may be stored on paper (with a copy tucked into the hospital stay bag) or on a smart phone or tablet. Again, a trusted ally will need the password.

4. Writing materials

A small journal or notebook and a dependable pen or two are critical components of a hospital stay bag. Once admitted to the hospital, the patient (and his or her accompanying friends or family members) is sure to receive instructions from physicians and nurses. Often, patients think of questions to ask these individuals when they reenter the room. Patients generally gather assortments of physicians’, physical therapists’ and other professionals’ telephone numbers or business cards and need a place to keep them.

Having a friend or family member along to take notes can be extra helpful.

5. Clean underwear

If a patient is admitted to the hospital suddenly for even one night, it’s a relief to have packed at least one set of clean, fairly presentable underwear in a hospital stay bag. A real bathrobe and an extra pair of clean socks can be bonuses.

6. Cell phone and charger

Hospital phone bills are steep, with surcharges often added, even for local calls. Most hospitals now allow patients and visitors to use their own personal cellular phones in patient rooms. Of course, cellular phones require charging fairly frequently.

Although the patient will likely already have a cellular phone in a pocket or purse, an extra cell phone charger is a most useful item to include in a hospital stay bag, especially if he or she is admitted and needs to alert and update loved ones.

7. Non-skid slippers

An inexpensive pair of non-skid slippers is a strategic item to include in a hospital stay bag. Basic scuffs or moccasins may be purchased quite economically at discount stores. These can be used during an unplanned hospital stay and discarded before returning home (unless they are machine-washable), so as not to transport any hospital floor germs or dirt to one’s private dwelling.

Many hospital staffers encourage patients to stand and walk, if possible, during their hospital stays. A trusty pair of non-skid slippers can be a big help, particularly if the patient is injured or a bit unsteady on his or her feet for a while.

8. Comfortable stretch athletic clothing

Many hospital patients are required to participate in stress testing, particularly for cardiovascular examinations. Often, patients are instructed to walk or run on electronic treadmills, while they are monitored. For these procedures, patients are urged to wear athletic clothing, such as shorts and tee shirts and rubber-soled gym shoes. A well-prepared hospital patient, even for an unplanned stay, will have an extra set of these items in a hospital stay bag.

9. Reading material

Hospital stays can be boring, particularly if they last more than a day or two. By packing a compact book, Bible, crossword puzzle book, Sudoku book, a deck of playing card, or a few magazines into a hospital stay bag, one can be prepared. A laptop or notebook computer or a tablet can be a portable plus.

10. Favorite photos

Hospital rooms can feel pretty impersonal. If the hospital stay bag includes a small family photo, a framed Scripture verse, or another treasured image, the patient can pull this out to personalize his or her private space a bit during a hospital stay. Here’s another option: Plenty of people store favorite photographs on their smart phones, tablets, or portable computers. That fits the bill nicely.

Don’t take these items on a hospital stay.

Several items should be left at home (or locked in the car), if one must be admitted to the hospital. These include cameras, expensive watches, fancy jewelry, wedding rings, and irreplaceable sentimental items. Try not to take important personal documents (such as checkbooks, credit cards, and passports) along to the hospital. If one is admitted suddenly to the hospital, it is best to leave these essentials with a trusted friend or family member. Most hospital staffs try to look out for patient property, but these items are much safer at home.

Lots of hospitals caution prospective patients about taking cell phones, laptop or notebook computer, tablets, CD players, and other devices along. Hospitals are not likely to claim responsibility, if items go missing. Caution is warranted.

Although it is impossible to prepare fully for an unplanned hospital admission, a few advance steps can make such an emergency a bit less stressful and also considerably more comfortable. Packing an emergency hospital bag ahead of time eases one possible headache that may be associated with a personal medical emergency. At the very least, it helps to have a list of important personal items to snatch up quickly before heading to the hospital.



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MS is like a carnival thrill ride without the thrill.




Oh, baby. Here we go again. Here come the whirls, the spins, the ups and downs, and the twists and turns. I don’t remember buying a ticket for this ride.

It’s not exactly the Ferris Wheel.

Multiple sclerosis warriors know exactly what I’m talking about. We’re the ones who don’t even get in line for the rides at the county fair. We’ve already had more than enough dizziness, sudden drops, and uphill climbs. We don’t need an amusement park attraction to give us those.

Adapted by this user from public domain photo
I might have seen this latest episode coming. It’s just that I sort of stop paying attention when my MS symptoms subside a bit. I jump in with both feet and exert extra efforts each day. I run more miles. I blast through countless projects. I show up for events I might otherwise decline. I knock errand after errand off my ever-growing list.

And I pay for it later.

The cycle is sort of like a merry-go-round gone bad. The floor wobbles. The horses bounce up and down without rhythm. And the whole thing picks up speed and slows suddenly without warning.

Adapted by this user from public domain photo

This is no kids’ stuff.

Today it hit. Again.

I stopped at the stables with highest ambitions of riding my horse better and longer than ever. I pulled on muck boots and trudged out to the paddock to fetch her and lead her back to the barn. I groomed and polished her. I tossed the heavy Western saddle up on her back. I bridled her. And I climbed aboard.

That’s where the MS amusement park ride went off the tracks.

The horse recognized my vulnerability today and began testing my aids. It’s as if she were saying things like:

“I don’t feel like working hard today, and I’m pretty sure you don’t either.”
 “What’s that noise outside the arena door? Something out there’s gonna eat me.”
“Do you really mean to go faster today?”
 “You want me to trot all the way into the arena corners? Ha. Make me.”
“'Whoa?' What does that word mean?”

MS vertigo is a crazy thing.

I am amazed at the adaptability any of us can have, walking around on two feet. If the vertigo doesn’t make me reel too much, I can kind of compensate. Maybe I run one hand along a wall while I walk. I might hang onto the railing on the stairs. Often, I can sort of get by, even if I feel pretty woozy that day (which is often).

Climbing aboard a horse is another story. This means adapting to unpredictable movements made by an independent creature. It’s not like riding a bicycle – or even a carousel horse. The rider’s balance (or lack of balance) influences the live animal underneath him or her. The MS dizziness can increase exponentially. And a well-trained horse is likely to follow the rider’s most subtle weight shifts.

Today, for example, I tried to sit as steadily and evenly as possible in the saddle. I didn’t think I was leaning to one side at all. But my horse veered to the right… then the left … then the … well, you get it.

Public domain photo

Sometimes a straight line is a whole lot more complex than it seems it ought to be. 

Toss in a spell of optic neuritis in one or both eyes, and the whole depth perception thing is gone like the proverbial wind. That takes away the sense of speed. (How fast is this horse going, anyway?)

That’s when the MS warrior feels a lot like an amusement park customer, stepping off a wild ride. Except the MSer can’t just step off the ride at will – or even predict when it will come to a full and complete stop.

Let’s just say my time in the saddle was a whole lot shorter than usual today. But the whirling ride in my head is still going on and on and on.



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Saturday

Is MS gonna make me a germaphobe?



Eek! It’s a germ!

Multiple sclerosis warriors know the drill. We understand that this thing is still incurable, although we hold onto hope that a cure is coming, just around the bend. We have read the research, explaining how MS basically means our bodies are betraying us. Our immune systems like to go into overdrive, attacking us without just cause.

Toss in a real infection, and the sleeping giant that is the immune system rises with a vengeance. Then we can be in real trouble. When we catch a cold, the flu, or another illness, we sort of become sitting ducks for full-blown MS exacerbations.

Image created by this user on text generator.


Germaphobia is a genuine concern for the MSer.

A slight bout with sickness just might toss any of us into MS distress. On the other hand, stress also aggravates MS. That means worrying about germs can be a problem too.

So what do we do about handshakes? (Read: Health and etiquette: Should handshakes be handed off?) How about handling shopping carts at the grocery store? Do we recoil at the idea of touching elevator buttons, sink faucets, doorknobs, stair railings, or light-switches? (Don’t get me started about airplane seats, arm rests, and tray tables.)

Maybe we shudder to think about pressing our fingertips on the control panels of the treadmill, stationary bicycle, or rowing machine at the gym (if we are still fortunate enough to be able to work out).

Personally, I try not to freak out about germs, but I am surely conscious of the possibilities of infection. I wash my hands frequently. I carry a tub of handy cleaning wipes in my car and tuck smaller pouches of them in my gym bag and my handbag. I also keep little tubes of antibacterial hand sanitizer around.

And I pray a lot. Honestly, sometimes I wonder if I pray more about food safety than provisional gratitude, when we say grace before eating. I want to work on that balance, but clearly both prayers are important.

Pixabay public domain photo.

What about mixing with sick people?

I think it’s important for folks to understand that the MSer (and anyone else with an autoimmune issue) is not acting anti-socially when canceling a get-together or declining an invitation. If we telephone or send cards, instead of visiting, when a friend or loved one is hospitalized, it doesn’t mean we care any less.

And, if we show up, we’re not being snobby or stand-offish, if we stand back from the hugging or give you a friendly nod in place of a handshake, especially if you are coughing or sneezing or complaining about illness.

We really just cannot afford to be laid up for days or weeks with an MS relapse after catching whatever you have. We want to be friendly. Most of us honestly desire to reach out. But we have learned (usually the hard way) that we have to guard our health.

Because with MS, our own bodies really are out to get us, especially when we’re under the weather.

This week, for example, I am wrestling with MS-related balance issues, nearly constant vertigo, and intermittent sudden-onset fatigue that knocks me flat several times a day. I don’t have stomach flu or a raging head cold. So far, the flu-ishness is just a matter of stuffy head, all-over achiness, and several county-clearing sneezes each day. But the harbinger is here.

Something’s a-coming. The MS MonSter is not on the porch yet. But something about this whole deal rings a bell.



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