Monday, January 8, 2018

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.) 

32 comments:

Anonymous said...

Bummer, being sick is no fun. My own preference would be to have my Doc put me into an induced coma until the fever passes. Of course my Doc won't do that so I've had to rely on my mother's time tested advice, asprin, cool compresses, alcohol rubs, maybe a bennedrill and sleep, lots and lots of sleep.

AmfAdventures

Dave Bexfield said...

Thanks AMF. A coma would have been fantastic. Never thought I'd say that!

Lyla said...

Thank goodness you survived! I have had the same miserable "cold" that lots of folks seem to have come down with. I can totally relate to waiting for my body to freak out while watching the fever rise. The advice nurse suggested I get up, tidy up my bed, take a shower, put on clean PJs and get back in bed. When you hit 100.4 for 3 days, then you can call us back! :-0

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!

Dave Bexfield said...

Lyla, so nice to hear your story. They say misery loves company. And I do love your company, really. But next time why don't we just grab a cup of coffee? :) Feel better.

James Walsh said...

I have PPMS and have twice been floored with a cold/flu-high temp, MS symptoms gone totally haywire incident. I mean, 2-3 days of only getting out of bed to nearly drag myself or Frankenstein walk the 20 feet to the bathroom. No food, sweating like I was in New Orleans in July, dying.

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.

Dave Bexfield said...

I like that bright spot, James. And that's the only thing I like! BTW, you used the f word. Bad James. Hyphens do not give you a pass.

Anonymous said...

I have always wished I could run a fever but now I'm rather glad I don't. My body temperature tends to drop when I'm sick. It makes it hard to convince a doctor that I'm as sick as I say but I've never had such a horrible experience with getting sick. It's horrible and takes forever to recover but it doesn't make my symptoms worse

Kathy Reagan Young said...

Hey Dave -- Sorry to hear you were ill. I, too, have been sick as a dog this winter. Today marks the 3-week mark of what everyone else termed "a cold." That's what they got. That's what they experienced - and recovered from in a few days. With MS, however, a cold is never just a cold. It developed into an upper respiratory infection and a double ear infection. I still can't hear out of my right ear. MS makes every illness twice as bad - and last twice as long. I have tried fighting it - but the best thing I've found to deal with any type of illness these days is just going to bed. That's it. I have to give in and let it have it's way with me. I hope that my MS doesn't flare because as well all know, MS is a very jealous disease. It doesn't like us paying attention to anything other than IT. I hope you're completely over your sickness now. I'm well on my way - almost there! #FUMS

Ronald Crooker said...

My story is the same, last year it took my wife and both my boys to hall me upstairs to bed when my legs gave out at the bottom of the stairs.

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.

Dave Bexfield said...

Wow, Anon, hadn't heard of that, but nothing related to MS surprises me these days. And Kathy, I am feeling better today, although my temperature went up and I had to take a pause and an Advil. Got in a decent workout later. And Ronald, potentially messing up the tummy when the legs no workie is a recipe, and not a good one, ha. Interesting.

rachael. said...

I have the 3-letter F word. I feel like the 4-letter one. My body hates me when I’m sick, especially when it’s a nasty virus. And especially when I’m already exhausted after 2 weeks of nursing my 6 children through the same. I always get it last and am down the longest. Tips and tricks? None, really. Aside from a superhuman husband and good support system. A beeline for the restroom. And a good show to watch. All so I can lay in bed and let it pass, and let my MS throw everything at me one after the other.

Dave Bexfield said...

Egad, Rachael. Feel better. Even super moms need to temporarily hang up their cape now and again. Rest up for another day.

Pam Newall said...

Oh dear, sorry you were so wiped out. I am now 60 😮 and had the flu proper for the first time in October. Full exacerbation of MS symptoms, needed help to sit up, get to the loo ..absolute rubbish. One day slid off the bed and had to wait for husband to come home to get me up again...got way to familiar with the bedside rug. A big help was glass after glass of ice cubes, and yes aspirin. I got the flu jab after that...Happy New Year Pam X

Dave Bexfield said...

Pam, sorry to hear you and your rug became besties for a time. Sometimes, despite our best efforts, we fall in to the wrong crowd. Literally. (In this case a shaggy one.)

Cindy said...

I also got the dreaded f@& but since I don’t have a lot of MS symptoms all the time it really threw me when my temperature climbed to 103 and I lost the ability to walk unaided. I used cold compresses, ice chips and prayed to survive.

Dave Bexfield said...

I feel ya, Cindy. The first time that happened to me I was blindsided. Now that I know what to expect, I can thankfully freak out earlier as I await that freight train!

Shannon said...

So sorry. Hope you get better soon!I got the flu on the first day of Christmas break (I teach school) and it started letting up a couple of weeks later, but I'm doing good now. This sounds kind of gross, but the thing that helped me the most was a neti pot. it allowed me to breathe and sleep well at night ... at least until the bronchitis set in. Rebuilding now, but grateful to bee amongst the living. I'm not a tv watcher, but the Netflix series "the crown" got me through.... just skip episode 7 in season 2..... the rest is great!

Dave Bexfield said...

Shannon, I will definitely skip that episode. Of course, not having Netflix makes that easier to do. Or a TV in my bedroom to watch such programming when ill. I suppose I could watch it on a tablet, but that is problematic as I don't own a tablet. Too bad my abacus doesn't get WiFi!

Marsha Smith said...

Got the flu the day after Christmas along with my husband. We just move from the bed to the sofa. Tried everything to get rid of it but still fighting hard. Got tickets to go to SHEN YUN for Thursday. Supposed to be a formal event, but I am just going to put on my sweats, strap myself into my wheelchair and go anyway. Not going to miss this after convincing my husband to get these tickets for my Christmas gift. Not going to lose my $300. Don’t care if I don’t meet the dress code, I just want to get out of the house and hopefully feel better going to this show. I will take my mask and box of Kleenex and hope I don’t give this crud to anyone else. My body will then come back home and back to bed. MS and the flu do not work well together but three weeks is enough. I will not give in!!!

Dave Bexfield said...

Marsha, I'm thinking tomorrow afternoon you'll rally and enjoy the performance. Though maybe wear darker sweats instead of your peach ones with the big reflective stripes...

Kerim Aktug said...

I have RRMS and I am going through having a cold right now (thankfully no flu) but I have been having troubles with heat regulation as well as major bladder issues (going every 30min) it sucks as I haven’t had a descent night sleep in about a week which is probably not helping my fatigue.
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.

Dave Bexfield said...

Thanks Kerim. Sleep is challenging when sick, that's for sure. And the rule of drink more fluids just compounds our bathroom issues! But I try.

Pamela said...

Started coughing, dry cough, about 5 days ago, that turned into hard to cough burning in chest and chills. got in the shower and my temperature skyrocketed, at least by the looks of my skin when I got. I face, arms, etc. etc. were bright burning red like I had a sun burn. Then temperature went to 101.5. Staying in bed, drinking bottle after bottle of water. My husband was out of town, hurray, he won't get it. He returned home yesterday evening and this morning my temp returned to normal. This flu was the worst, skin hurt, horrible headache, eyes burning, coughed until my ribs were bruised. Learned a good lesson about getting out of bed when sick, do not walk until you have your footing and something or someone to hang on to. I AM NOW GAINING STRENGTH AND HAPPILY FEELING BETTER! (P.S. hot shower was proabably a bad idea!)

Dave Bexfield said...

Great advice, Pamela. Even though I was careful, I still clunked. Next time no exceptions--I will use every aid available!

EW said...

Avoidance is the best I've found. Become a hermit. Avoid everyone and everything during the late fall and winter! Even a spouse who mingles with plague carriers at work! Ha ha!! Nothing like a typhoid Mary situation.

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.

Dave Bexfield said...

Exactly, EW. I missed a week of biking. The nerve of our disease and colds!

Whitney Shuck said...

I'm glad you're feeling better, Dave! Knock on wood, I haven't gotten sick this year. Last year was a different story. Child of a relative "just had the sniffles" at Thanksgiving, which I found out after he'd given me a big hug and I'd picked him up. That was Saturday. An hour into our five-hour drive home on Sunday, I developed a hacking cough, sore throat and a fever. Long story short, it was five weeks with a fever that included antibiotics, steroids, breathing treatments with a nebulizer and having to sleep sitting up.

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!

Dave Bexfield said...

Thanks Whitney! I've been on a first-name basis with my hand sanitizer for years. I always use the avoidance tactic and friends know well, but when your spouse gets sick, there's not much you can do. (Laura is obviously real careful too.)

Jane Bow said...

Dave, your blogs are such a blessing, thank you! Nice to know others are as paranoid as me about illness.

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.)

Dave Bexfield said...

Jane, this all sounds great except for the singing in the shower part. That would violate my parole agreement.

Anonymous said...

Hi Dave,
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 :-)

Dave Bexfield said...

First visit after 28 years, Anon? Well it's about time! And yeah, Laura is a saint. People keep saying they want to build a monument for her, and I can't disagree. As for colds, I don't get them often, but neither does Laura. We are both hyper vigilant. My white blood count is also regularly low after HSCT, so I'm actually probably more at risk than many MSers.