A Day in the Life of an MSer

“What do you do all day?”

February 27, 2012

I don’t work.  I’m on long-term disability.  So from time to time, the question is asked of me, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you are currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them the basics: I rest intermittently, exercise or swim, walk my dog, read, get on the computer and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can open up a can of worms.  For example, there are the people who want to give advice about all kinds of things, which
can get annoying if they really do not understand MS.  And then there are the “one-uppers”; they really are more interested telling a personal story that is far worse than your situation.

But once in a while over the years, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair, I usually “look so good” and am smiling and perky.  I keep busy, do things and accomplish things without complaining.  It’s like they’re implying I shouldn’t be collecting checks from the government.

So what do I do all day?  Okay, it is time to get specific.  As most MSers prefer, I do things on my own as much as possible to strive to maintain my independence.

  • I’m in bed at least eight to nine hours a night but actually only get six-eight hours of broken sleep because of bathroom,muscle and insomnia problems.
  • In the morning, it takes me at least an hour to shower and dress myself.  In the winter when I have to put on socks and shoes, add another fifteen minutes.  It exhausts me and then I need to rest.
  • Every time I use the bathroom, it takes at least ten-fifteen minutes.  I self-cath, so by the time I wash my hands and everything else, do my thing, cleanup, etc. it’s
    quite time-consuming and exhausting.
  • I exercise or swim everyday to keep my musclesstretched, strong and toned.  Afterwards, I need to rest.
  • I take my dog for a walk on my scooter to get out a bit and give him exercise.  That’s another hour.
  • By now, almost 2/3 of my 24-hr day is gone.  Add in eating, reading the mail and
    newspaper, going on the computer…
  • Now, factor in doctors.  At least annually, I have to see a neurologist,
    internist, urologist, gynecologist, dermatologist, dentist, and ophthalmologist.
    In between, stuff happens that require more visits such as a urinary tract
    infection, allergies or a relapse.  More doctors, time, and fatigue. Recently, I developed a urinary tract problem and within a two-week period, I was in an office or lab getting a test on five different days.
  • After all those basics of personal care are dealt with there are other things that need to be done, like taking care of insurance forms or claims (BIG headache here!)  and paying bills.

When trying to do all this, the inevitable happens.  My stiff hands will drop a jar of olives or an open box of Cheerios on the floor.  Stress levels go up, exacerbating fatigue and all the other symptoms.  Uh-oh, the bladder is now starting to leak and clothes have to be changed.

Now it’s time for a timeout.  Then begin again on other things on my to-do-list.

We folks with MS have to deal with things like the fatigue, depression, numbness, and so many other invisible symptoms that make life complicated, exhausting and more time-consuming to accomplish things.  It doesn’t matter whether we are in a wheelchair or not. There are kids to raise, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is tough  enough.  Throw in MS and the time and energy it takes to do a task double or triples. So often, many things can’t get done, get done differently, or don’t get done at all.

THAT is the life of an MSer.

Acquaintances, some friends and even some family who read my book after I published it were stunned, to say the least. Some comments:  “OMG—I had no idea…”, “what an eye-opener”, “If I would have known…”

But how do you explain all this?  Should you try?  Do they really want to know?

Again, you are the judge.

If you want to someone to know but don’t want to explain, just hand them a copy of this article.

Author, MS Counselor/Volunteer

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