Tag Archives: aliens

MS/PMS MonSter Mash

An MS transformation

I recently joined a Facebook group for people with multiple sclerosis. The group is awesome and if anyone is looking for an online community where you can ask questions, meet other people in circumstances similar to yours, or just joke and vent, I encourage you to look into it. It is called Friends against the MonSter.

When the friend who started it told me about it, I was a little confused about the title. To me, monster is an affectionate term. I think it comes from being a kid.

When I was maybe eight or nine, Monster Mash by Boris Pickett was fun and huge and my favorite book back then was called How to Take Care of Your Monster by Norman Bridwell. Somehow I lost that book and have never found it again. If anyone knows where I can locate it, please let me know.

Several years later, when my nephew Drew was a grouchy baby living with colic, I took to calling him Drewmonster or Monsterbaby– see, total affection. In my messed up brain, for some reason when I think monster I think cute and cuddly. Thus, the name of the FB group didn’t seem appropriate. It is a page for people living with multiple sclerosis and I have yet to find anything cute and cuddly about that.

Vampire, Zombie, Serial Killer, Alien, Ghost, the specific name of frightening creature is frightening, but the word monster just doesn’t scare me.

Now Drew is a grown man and he and his wife have two little boys of their own. Both kids are adorable, and yes, cute and cuddly. One is just a baby and as innocent as a baby can be. The oldest of the two is 21 months and is smart, funny, delightful, and for the most part, happy. Like his dad, he is also stubborn. Upon this discovery I began to rethink the monster term. Something wasn’t clicking and I think I figured it out.

For 99.9% of the time, the child looks like this.

But when he is exhausted and his stubbornness kicks in, he can suddenly and terrifyingly change. I swear, one time I needed to change his diaper and he didn’t want it to be changed. I am still shuddering from the Linda Blair like look he gave me and had nightmares all that evening. I could literally see the transformation from adorable, perfect little boy to a creature I did not recognize.

This transformation reminded me of something but I wasn’t sure what. Eventually I figured out that it reminded me of me! But me when PMS attacks. All you male readers who hate hearing about things like PMS, may want to skip ahead a bit.

Before my family and I left on the trip to visit these amazing kids, I was trying to get things crossed off my to-do-before-I-leave list. As everything I attempted to complete didn’t get completed and were doing me in in their own frustrating way, I suddenly underwent an insidious transformation.

I could feel this ugly scary black cloud envelope me and I began to stomp around my home growling these guttural growls and shooting daggers at anything in my path. My landlord needed to stop by and when I answered the door he must have been frightened by the creature I had become. He backed away from the door saying the thing in the house he needed to check could be checked later and ran to his car.

“Wow, that’s screwed up,” I barked to no one, “why the hell did he come over in the first place??”

Sure enough, six days earlier than expected, my cycle started that evening.

Ok, so PMS can turn me into something scary but who knows what that something is…..

After a plane ride with my mom and sister to the state where the youngest members of our family lived, the transformation happened again. Two days after the arrival, the exhaustion from the long day of flying and headaches from all the noise, overwhelmed me. Then, landscapers showed up to work on the property we were staying at, complete with their machines and loud motors.

Next, somebody ticked me off and (and there was definitely no PMS about it,) the black cloud showed up with a vengeneance. I turned mean and scary, and my family and residents of the neighborhood began to run screaming from me as I approached.

Insane mood swings can be considered a part of MS, so I have been told. What is this blackness born of frustration, aches, and pain? What does it turn us MS’ers into? Where does it come from?

Since it is MS, it is probably unlikely that it will get figured out. But as my young great nephew can turn from cute and cuddly into a monster child in two seconds flat, I realized so can I. Whether it is PMS or MS (put them both together and I can probably take on Godzilla), 99.9 of the time I am still cute and cuddly.

Thus, I now understand why the FB group is called Friends against the MonSter. The monster is our cute and cuddly selves under the influence of the insidious demon that is MS. Or, PMS. Or maybe like my nephew, our stubbornness at getting a diaper change when we are clearly not in the mood for a diaper change….

Post Scripts to this post

1. There are actually several great FB groups I belong to that can help people with MS have a forum to discuss living with chronic illness. The above mentioned is only one of them that I used for this blog because of the great name although it is also a great page. Please contact me if you would like more information about this group or others- [email protected]

 2. While all of the above is/was true, and this blog needed to be written, this was also a place where I could get away with showcasing pictures of some of my nephews. The first picture is Drew during one Halloween and the others are his firstborn.

 3. While I truly hope my blogs are helping others and that is my main and only goal, I still wouldn’t mind a WEGO award! Here is how to nominate me if you think I should be considered.

WEGO Health Activist Awards

 4. Thank you all!

Scary Brain, Scary Movie

Multiple Sclerosis is a Horror Show

It is the afternoon and I am shuffling around my house, trying to focus. I have my lists; all the MS helpful tip books suggest lists. There is the to-do-this-week list. There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list. But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read.

I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead. What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water. I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today? I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.  Figures. Leave it to me to equate my multiple sclerosis to a horror movie. But is The Fog the right horror movie?

I am wandering around lost in my own little world and not feeling quite right- almost zombie like. Yes, zombies, zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it is not The Fog but Night of the Living Dead.


My zombie nephew

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”


My costume before MS

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.

I remember all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants. Yes, Psycho is the movie. That is the one that most describes my MS.

And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging. Yes, Psycho felt right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise?

And here are those weird ear noises again- has my body been taken over by aliens? That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net