Sick, With MS
I’m sick, with multiple sclerosis. The comma is
intentional. I have MS and I have a cold. Typing is no fun, sitting up is no
fun, and trying to be funny is no fun. Fortunately, according to Laura, I don’t
have to try to be funny. I just wake up that way with a cowlick. (An aside,
when I was younger I used to warn my haircutter that I had colic, which puzzled
the hell out of them when they started to cut this teenager’s hair. But that’s
how my grandma pronounced “cowlick,” and I didn’t know any better.)
The problem with getting sick when you have MS is
that it gets the immune system revving quickly into redline territory. The flu?
Let’s put that into the Fight Club category. The first rule: you don’t talk
about it. Hell, these days I can’t even think about it. When I got the flu shot
a few months ago—which apparently is only 10 percent effective this season—I
could not move for six hours (kinda scary) and was down for nearly a day. The
real flu? We’re talking ambulance, ER, and a weeklong hospital stay. So let’s
not talk about that, shall we?
For me, temperature is everything. My body freaks
out like that young kid who discovered that Darth Vader was Luke’s father. Or
that baby who lost it over a monkey toy. Lost. It. So the other day, when I
felt my cold coming on and my muscles starting to stiffen, I began to, well,
FREAK OUT. So I got on the horn asap with primary care’s nurse. This is
basically how it went.
Me: My wife is sick and I think I might be getting sick. And I have MS. My body is starting to rebel.
Nurse: Okay, describe your symptoms.
Me: I have a slight cough and my temperature went up from 97 to 98.6 degrees.
Nurse: Go on.
Me: No, that’s all. (Muffled cough.) A cough, like that. No phlegm or anything, just a cough.
Nurse: Well, I can’t triage you, as these symptoms, well, I can’t even input them into my system. A mild cough and normal temperature fall out of that range, sir.
With a bonkers flu season, masks should be mandatory. |
As I was talking to the nurse, I realized what an
idiot I sounded like. I certainly was going to be a topic of conversation at
Happy Hour that night. All I could do was wait for the hammer to fall. Or the
Dave to fall. Just a degree and a half rise in body temperature—probably
unnoticeable in most humans—meant I needed Laura’s help to get off the couch, the
bed, the toilet. A comfort height toilet with grab bars, no less! We brought in
my wheelchair from the garage, unboxed the bedside commode I purchased last
year for just such an occasion (oh joy), and waited. One more tick up in
temperature and I’d be joking with the EMTs as they lugged my lifeless body
into the awaiting ambulance. And by lifeless, I mean rigor mortis. My
spasticity already was raging so badly my legs took huge amounts of effort to
bend. If my temp went over 100 degrees, I might be mistaken for a piece a
plywood, a potentially disastrous combination if I was living in Florida during
hurricane preparations. But I suppose getting boarded over a window might
distract me from my illness, a bonus.
Technically squawking (not chirping) cranes. |
Six days after I started writing this blog (do the
time-lapse, fast forward thing in your head), thankfully, things have simmered
down. When I checked my temperature yesterday morning it was a pleasant 96.8,
the birds were chirping, and a light exercise session with cardio and stretching was in store. Despite
temperatures peaking at a blistering 99.3 degrees, I never resorted to the
portable potty, which I thought at the time would make Laura happy. But in
retrospect, that stubbornness was a hollow victory. Two hard falls early on meant
using my wheelchair full time, and now I plan to see the doc to make sure I
didn’t mess up my knee (I’m optimistic I didn’t, as there is no swelling or
pain).
We all hate getting sick. But getting sick with an
autoimmune disease is a different beast. This is how I handled it. Better than
piss-poor, but definitely not that well. How do you all cope? Any survival
tricks? Post them below! (But please, remember the Fight Club rule and avoid
using the three-letter F word. Just saying you were “sick” is fine.)
Comments
AmfAdventures
Today is the first day in a full week that I am sitting upright after breakfast! All my body wanted was sleep, more sleep and sleeping some more. The kind of sleep that doesn't move anything that was piled around you when you nodded off - including the cat. I have been living off of throat lozenges, ginger ale and herbal tea. I've lost 3 pounds and food still doesn't have much appeal but hopefully the worst is over!
Hopefully someone tosses out this year's batch of flu vaccine -- it certainly didn't do the trick for me!
Each time, my greatest fear was: "What if this is the time that my symptoms have gotten so bad that it's a wheelchair from now on?" It has truly been frightening.
The one bright spot of the last time it hit me really bad, exactly a year ago, is that I lost 10 pounds in three days and it has stayed off.
I take a clove a raw garlic a day and that seems to keep the bogeyman at bay. Chop it up into small pieces let it sit for 10 minutes then slowly "dissolve" it in your mouth with a cup of Green tea and honey. Warning it may take several minutes to do this without messing up your stomach.
The way I cope when I get sick is first give myself a neutral area in the house that has a constant temperature and then make myself a comfy place to lay down to rest. It may sound simple but it sure has been a struggle with the winter weather.
When I can't do that, I use the advice a pediatrician gave me long long ago when my son was sick. Use a q-tip and wipe an antibiotic ointment on the inside of both nostrils to prevent catching crud from other people. He said that was how he avoided getting sick when so many of his patients were. I'm trying it religiously this year. Fingers crossed, so far so good. Once sick things go south quickly for me and there is no advice.
Glad to hear you are feeling better!!! It is especially frustrating to get sick when it is cold enough to shed the cooling vest. I have 5-6 months out of the year to feel like a semi-typical person and curse any kind of winter illness that ruins it.
I missed Christmas (everyone else was in another state!), was out of the gym for six weeks, on reduced weight workouts for longer than that and felt like roadkill for still more time. After figuring out that being really angry about being sick for that long wasn't going to make me better, I did a whole lot of research, started using essential oils, and drinking a super-food juice every day (neuro approved). So far, it's worked for me and I've managed to stop impending doom in its tracks four or five times. I also wash my hands and avoid sick people like the plague. I hope everyone feels better and recovers soon!
I have PPMS and like James Walsh always worry that set-backs are the arrival of Doom. Rarely get sick though, using the hermit technique + vitamin & NAC supplements. If dearly beloved spouse passes on a bug, I use a failsafe routine of neti pot after humming Amazing Grace in the shower (hot on sinuses, helps dislodge congestion; get out before heat nails me.)
This is my first visit to your blog. Sorry to read that you were sick & glad you're feeling "better"...better, being a relative term in the MS world. I love your attitude, way with words and writing style...you could make a career of this LOL. Anyway as to your post today...I've had MS for 28 years so I've been in your situation a few times before. Agreed...not fun, especially when you get the dreaded 1-2 degree temp upgrade...99 degrees, WHAT?? FEVER, oh no!! LOL... Your right, it does sound bizarre to say it...definitely not to live it though, for me..my eyes go first, then the muscle weakness. I have a number of body cooling products that are put in rotation then to help keep the the temp down. Those work for me. The really good thing though, this year (so far) no cold/flu-fingers crossed it stays that way. Question for you though...because of our heightened immune system, it seems like I with my MS don't get sick as often as other "healthy" people I know. Kind of ironic, right? What about you? BTW...your wife seems like a saint :-)