Tag Archives: zombies

Too Many Steves

Multiple Sclerosis in the dating world

 

*****The names of the males in this blog post have been changed in order to protect my reputation****

I was talking to friends about the need to change some names while editing my book. I told them that one of the names I had to change was that of my most recent boyfriend, who was also one of the two loves of my life.

(Is it ok to have two loves of your life, maybe three? Especially if one was your very first love way back in high school and into your early twenties. There is that love of my life and the most recent guy and “one who got away” guy. That’s all. Just those three with some problem guys, no way guys, and “what on Earth was I thinking” guys in between.)

 

Anyway, let’s call this guy, the recent one, John. Since I haven’t talked to John in a while and so could not get his permission to use his real name in my book, I had to change it. I changed it to Steve, thinking Steve was a good name. I told my friends that I came up with the name Steve as I had always had a little crush on a guy named Steve Smith.

“But isn’t it weird to give John the same name of a guy you dated?” Serena asked.

“I didn’t date Steve Smith,” I replied. “I just had a crush on him.”

“No, not Steve Smith. But you dated Steve Jones. Remember Steve Jones???”

Serena was right. Not only had I dated Steve Jones but I had actually lived with him for a bit. My MS brain completely forgot about a total relationship. It wasn’t a terrible relationship either. It was actually a fun time in my life. How could I have forgotten all about Steve Jones?

 

This was very concerning. Memory loss with multiple sclerosis is very common. But forgetting an entire relationship was on a whole other level. MS has contributed to making my dating life pretty much non-existent. If it starts erasing memories of the social life I used to have, then what will I do???

Being single is one thing, but having always been single, especially if you weren’t? That is just way too much.

People ask why MS has affected my dating life. The simple answer is the fatigue. No matter what people say, dating takes work and work is exhausting. And since I am already pretty fatigued all the time, I feel like a zombie.

 

I’m not picky but I am not sure that it would be good idea to date someone who wants to date a zombie.

Who do zombies date anyway? Not vampires. Zombies don’t have much blood and what little blood they do have is filled with interferon and other meds. Not a good match for a vampire.

A werewolf? Do zombies date werewolves? That seems pretty hairy to me.

 

On and on the thinking goes and just like that, I am even more exhausted just thinking about dating.

But in case you think I am bailing on this dating thing too early, let me give you an example. I was invited to a social gathering, a party if you will. With my first glass of wine in hand I started talking to a guy as it turned out we had something in common. We talked about what we had in common. Then I realized we were talking!

I didn’t know this guy’s story. He was about my age but was he single? Nice?

I started to think too much. My legs started to hurt from standing there talking to the guy. I started to panic and with only two sips of wine, the panic was not subsiding. Should I continue to stand there and gulp down wine while I attempted to continue this conversation?

 

It seemed too much. Getting ready for the party had been tiring enough. What I really wanted was a nap. I couldn’t take the stress. And since stress is not good for MS, I ran away from the guy into the lawn chair in the middle of my safety net- ie, the people who had invited me to this shindig in the first place.

Fortunately, the chair happened to be right near the table holding all the wine.

Then I proceeded to beat myself up for running away and hence, just gawked at the guy during the whole rest of the event. That, of course, made him think I was a weirdo. I prefer the term zombie.

Fast forward several weeks and I get invited to another shindig. I find a table with friends and high chairs. I am mostly through my glass of wine when I realize that a guy I recognize from my party days happens to be standing directly behind me.

This was a somewhat fancy event and I was dressed up a bit and had actually put on some make up. Girly girl make up, not zombie cover up.

 

I was sitting, felt giddy with the wine and decided I would not repeat my mistake from the last social event. I re-introduced myself and the guy and I chatted for quite a while. He was there alone and I wasn’t panicking. I could do this chatting/flirting thing.

Someone called to him and he moved away. Eventually I moved away from the area as well and then it was time for my friends and me to leave. I didn’t talk to him again but felt confident that I had taken a step forward, moved out of my “destined to be single forever” shell.

Then I caught a glimpse of my reflection in the car rearview mirror and realized I had a bit of pesto from one of the appetizers stuck in my teeth. That made me re-analyze the whole pesto added conversation and I got tired all over again. I’m sure the wine didn’t help. I went home and, you guessed it, took a nap.

So you see, dating is very fatigue inducing and stressful to me and my MS. I don’t really mind being single as I have had a pretty fun and interesting social life in the past. Which is why I need to remember it and why forgetting Steve was very traumatic!

Luckily, I had Serena to remind me. That’s what friends are for.

At least until I find me a zombie.

I will name him Steve.

***I take this blog writing gig very seriously and always try to research what I am writing about. Turns out, there is a dating site for zombies! Who knew? If you know a single zombie looking for love please direct them to ZombieHarmony. Their tagline is “because the apocalypse doesn’t have to be lonely…”

 

***Further research shows that the site is no longer active. Guess all the zombies have been matched.  Damn.

***For observant readers interested in my future book, you read right. I am editing away. The goal is for the published (still unnamed) work to be released just after the New Year. If the apocalypse doesn’t get me first…

 

 

 

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!

Stormy, Sleepy Sandy

An MS’er weathers the hurricane

This week’s post is in no way designed to make light of the recent hurricane that has brought havoc to parts of the East Coast. My prayers and well wishes go out to those who have lost loved ones, those whose homes are destroyed and/or those who are forced to live in horrific conditions while the clean up takes place. The post is only meant to do what I do- take a very serious issue, discuss it in a different way, and then make fun of something. What is being made fun of this week is me and, as always, multiple sclerosis.

I was ready for the approaching storm. When you have a whole week of newscasts giving you hourly updates, even the most fatigued MS’er has time to prepare. I had candles, flashlights, batteries, provisions, drinking water, and water to use for the basics as, if the power went out, so did my faucet water supply.

Where I live on the Massachusetts coast we weren’t expecting a direct hit. We were told however, that since the storm was so huge, we should plan on extensive and long term power outages. I had a good book, I could deal.

On Sunday, as the winds started up, I panicked at the notion that I may not have matches for the candles. What good are candles without something to light them with? I checked, found the matches and hunkered down.

The winds increased and the expectation was that the worst would be Monday. So, on Monday, I decided to get up early to take a shower first thing (might be days before I could take another one, better get super clean now) and have my precious morning cup of tea before the power went out.

I got up, did both and then immediately fell asleep for an hour and a half. I only woke up because the tea had gone right through me and my bladder was screaming for help. I still had power.

My to do list was outrageous and since there was power, I should get something done while I still could. But the exhaustion was out of control. I was afraid to turn on my computer for fear of losing everything I was working on when the outage came. In my brain fog I didn’t appreciate the fact that the laptop has a battery, and thus I would have plenty of time to save everything before losing anything.

 

I watched the winds increase. They were getting fierce. I shuffled around, read a bit and managed to find just enough energy to make my bed. This was important as everyone knows that when the end of days come, those with made beds will be spared.

I made lunch. Then fell asleep again. Then made another cup of tea and fell asleep, waking again to my bladder alarm clock.

As fatigue and cognitive difficulties are my worst MS symptoms, I was used to being tired and used to the recurring brain fog. But this was unlike anything I had ever experienced before.

Just before 8PM I felt confident that we might not lose power after all and settled down for Dancing with the Stars. As the opening music began, the lights went out. Considering the seriousness of the storm, missing my favorite show was not an issue. I took a flashlight and book to bed and promptly fell asleep.

By the next morning, the power was back on and I awoke thinking I should see how the rest of the world weathered Sandy. I drank my tea while I watched the news and saw that parts of the Coast were in a catastrophic condition. I shed a tear and prayed a prayer for the people suffering. Then I fell asleep again. And again, awoke to a screaming bladder and repeated the exhaustion and fog of the day before.

What is this? Is it a flare? Is it my own emotions wiping me out as I thought of other people and their struggles? Did preparing for the storm take a mental toll? Was it the aging thing again?

I was reminded of the theory I had developed back when my 89 year old grandmother had moved in with her 91 year old brother. I would often spend the weekend and once, after returning home very late from a date and having my uncle open the door for me (he was not waiting up specifically for me, he was just up,) I realized that it wasn’t that the elderly go to bed early, nap a lot, and then get up early. It is actually that they are on a two hour on, two hour off, sleep cycle; at least in my family.

Both my grandmother and my uncle would be awake for two hours, sleep for two hours, and then wake again and repeat 24/7. Is this what was happening to me??? Had MS finally turned me into my grandmother?

It didn’t help that during these days I was also super hungry all the time. And by that I mean really hungry; hungry, hungry hippo hungry. With my sweet tooth, my junk food tooth, my salty tooth and my everything processed tooth, I could usually find room to snack. But these few days I was hungry for anything. It would have been a great time to have veggies in the house but with the threat of power loss, I hadn’t bought any. (All you super healthy people who are thinking ‘you could have bought veggies that you eat raw’ you can just go chomp on a carrot!)

Wednesday came and I still felt the same way-on a permanent sleep cycle, starving no matter what kind of healthy or unhealthy thing I consumed cycle, super achy, super spacey, oblivious, etc. Even breathing seemed to be too tiring a chore.

I called Laurie who has had MS a lot longer than me and who has a friend who has had MS a lot longer than her, and she mentioned her friend had mentioned something about barometric pressure. Say what?

I hung up and took another nap. But with a slight bit of energy on Thursday, I looked it up.

Barometric pressure describes how heavy the air is. That normally wouldn’t mean anything but I looked it up some more and Googled MS and barometric pressure. Turns out, when the air is heavy, it is like it is working against you and weighing you down. Every normal effort you make, you make under this extra weight of heavy air. It is like carrying a baby elephant around your shoulders as you try to go about your day.

Phew… what a relief. With MS, the fatigue and brain fog will likely be constant companions. But good to know I can blame Sandy for this slow, sluggish, narcoleptic, useless, brain dead start to the week.

Lucky for me, that the pressure stayed lousy right through Halloween. No special costume required-my costume was that of an MS zombie. An MS zombie with a whole supply of candles, flashlights and batteries…..

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net

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