An MS’er looks at the 80’s
How do you describe an obnoxious, crazy, ridiculous, sometimes painful MS symptom that can’t be described? You revert back to your childhood. Or, your cousin’s…
I was a child of the 80’s.
Actually, that’s a lie. I was an incredibly awkward pre-teen of the 80’s and then a very shy and insecure teen of the 80’s. Thank God for the music or I might never have made it.
But, I had a male cousin who was a child of the 80’s and I remember that I had a fondness for one of his boy toys.
(No hidden meaning implied- I’m talking about one of his favorite, actual toys.)
It was this doll called Stretch Armstrong. He was a brawny dude made of rubber and you could stretch him in a million ways. You could stretch his head. You could stretch his arms or his legs. You could stretch his torso.
And, if you had friends visiting, and they all grabbed onto one of his limbs, you could stretch all of him at once.
Even though I was too old for it I liked to stretch him. Who knows why? I was even weirder then than I am now.
I’d been thinking about Stretch Armstrong a lot this summer while the heat and humidity consumed me, especially at bedtime. You see, I have these super uncomfortable feelings in my legs that I can’t explain. I’ve spent hours at night lamenting over them. How can I explain them to my doctor if I can’t even explain them to myself?
Then it came to me! They are like Stephen’s Stretch Armstrong doll!
Picture me lying miserably and trying to sleep. My legs feel like they need to be stretched as far as possible and perhaps even that won’t take the sensations away. The only relief MIGHT come from a giant kid and his giant cousin with the bad 80’s haircut pulling each of my legs as far as they possibly can. If I can turn myself into stretch deSousa, perhaps I could finally get some rest.
I was trying unsuccessfully to describe this sensation to another cousin who happened to be starting her first year of college where she will be studying nursing and she said what I had was Restless Leg Syndrome.
How could that possibly be? When I’m lying awake at night trying to stretch myself, (oh giant kids, come visit me any time please,) the TV is on and I see all these commercials for Restless Leg Syndrome. On TV it is defined as a creepy, crawly feeling.
MS and I have had our issues with creepy crawly. Is it a coincidence that the summer brings heat, humidity and BUGS? I constantly see bugs out of the corner of my eye and start batting at them only to realize that either my MS brain or the MS lesion on my optic nerve are making them up.
Except when they aren’t and I get the creepy crawlies over my whole body as I hunt for a fly swatter that may or may not be swatting at real bugs.
No, I didn’t recognize my leg crazy as RLS.
I did equate it with multiple sclerosis though and as the summer dragged on they increased from so obnoxious I can’t sleep to so painful I may never want to sleep again. At those times I pictured stretch deSousa, the toy version of me, being stretched so far that I was actually tied in a knot like a pretzel, which only made me want some of Auntie Anne’s cinnamon sugar pretzels. Not that they would help but they would at least taste good.
Unfortunately, and who knows why, Auntie Anne’s isn’t open at three AM.
After telling my doctor about my summer difficulties we decided it was time for a four-day infusion of Solemedrol. In other words, steroids baby, steroids.
I didn’t disagree but had some concerns.
Just because I felt like Stretch Armstrong didn’t mean I wanted to look like him. Have you seen how jacked he is? I don’t think that’s from stretching. I think it’s from all the roids he got at the toy factory.
But I had done the steroids nine years before when I was first diagnosed and they weren’t a problem.
Not the case when stretch deSousa was hanging out in the infusion room. What a grouchy, miserable, roid filled monster they turned me into. The first night consisted of no sleep and my body hurting as if I was ten different pretzels all tied up with each other. And not even good pretzels, the stale bar room kind.
The second and third nights my neck and head hurt beyond belief as if some majorly roid infused giant kid with fake Mr. T chains was pulling on my stretch head. Where the heck is a Ghostbuster when you need one?
By day 4 the pain modified to just aches. The week was done and I was spent and drained. All I wanted to do was rest. Just put me in a toy box, preferably on top of a Teddy Ruxpin and not on one of Steve’s many Transformers or action figures, and let me sleep.
Thing was, rested and no longer aching I did feel better. I didn’t become a he-woman from all those roids coursing around my body, and, for some very unfair reason, my fat didn’t turn into muscle. But I felt better.
And, it turns out, my young nursing student cousin was right; feeling like a combination of Stretch Armstrong and a delicious pretzel ARE indicative of RLS. I looked it up and it is described as a “disorder of the nervous system- just like MS!”
But then, how come the steroids worked?
Who knows?
Blame it on roid rage or on the toys of the 80’s. Or on MS itself.
I’m just happy to be feeling better and eager to get back to my regular routine. The 80’s are over my friends and I say good riddance!
So what if the roids didn’t turn me into She-Ra?
Maybe If I start eating healthy again my next doll incantation will be a Cabbage Patch Kid.
Or Strawberry Shortcake….
Blogger’s Note- I just discovered a mistake in this post. It’s not crucial but it doesn’t explain another aspect of MS crazy. I know my exact diagnosis date- will never forget it actually- 12/17/09. So above when I referred to 9 years ago, that was wrong. See, with MS I just can’t do simple math. I know 9 years is wrong but I can’t tell you how long ago I was diagnosed. Excuse me, I’m going to go ask a first grader to figure it out for me.
Where to start?!? Great post on so many fronts: The inability to describe exactly what those “weird feelings” are. (See https://rickconti.wordpress.com/2012/10/13/feelings-nothing-more-than-feelings/) The use of torture regimens to treat MS. (See https://rickconti.wordpress.com/2014/11/15/ms-and-torture/ ) The overlap of MS symptoms with those of countless other conditions, such as RLS, Lyme, and just plain gettin’ old. (I can’t think of one of my posts to plug for this topic.)
Sister, you could have milked six or seven good posts from this one! I applaud your restraint. Which is more than I can say for myself, shameless huckster that I am.
Thank you so much my friend- I really appreciate it! I’ll check out your posts too- especially the torture one!
never say good riddance to the 80’s those were some of the best years of my life and lets not forget one of my favorite bands Motley Crue was huge back then….. My grandpa had RLS and I know it was awful he would sleep in the livingroom so he wouldn’t wake up nana…I am glad that your feeling better now and able to get some sleep,your going to need all your energy for our next Ladies night.
Totally dude!
You explained perfectly what my RLS feels like. I sit or lie there and stretch as much as I can to try and squeeze the feeling out of my legs. The RLS drug makes me too sleepy the day after I take it to use, so I walk around and wait for my pain meds to take effect.
Lorri, I had no idea. I really did think RLS involved very different situations. Leave to a teen not even in college yet to figure it out for me! So sorry you are in this club too my friend….
Know the doll well and so sorry the nasty MS made you feel that way. I have only done steroids on diagnosis and made me even crazier than usual so I get it but it is in the past and you are better now so YAY! As for the bugs, well we must have the same ones here in VA!
Right now it’s the stink bugs who are hanging around. You can’t squash em or you’ll pay with the stink and the idea of flushing them skeeves me out. Don’t know why, like I said, I’m weird. So I try to collect them on a newspaper and put them outside where they promptly find the magic entry into my house again! Ahhhh, bring on the cold of autumn-please. It’s been in the mid-seventies all week here.
Hey, Yvonne! Great post! I graduated high school in 1988, so I love the 80’s, too! B| Sorry about the RLS. I’ve cared for many patients with it & it looks miserable! I can’t personally relate to you on this level, except when I got IV Benadryl, I had similar symptoms to RLS & I thought I would go berserk! You know being a nosy RN, I have to ask questions, give medical information, or both! 😉 Have you ever had a sleep study done? Most people think sleep studies are just to check for sleep apnea, but that isn’t so. Sleep studies are done for all types of reasons, can diagnose many ailments & give the (reputable) doctor great insight into how to treat them. I have talked with many MS’ers who also have RLS…lucky us! O.o
Thank you so much Susan! I’ve never done a sleep study. I can’t imagine how I would ever be able to fall asleep during a sleep study. I’m not trying to be funny- I really don’t think I could. Between all those things hooked up to me and knowing people were watching me sleep and/or taping, I don’t think I would ever fall asleep.
Wish I was a Stretch Armstrong most days. I am stretching constantly but the tightness never seems to go away. It is relentless.
Great post describing what we go through! Keep fighting.
Relentless fits the bill my friend. Thank you so much!
I just found this website tonight looking for ways to feel better besides the meds and the physical therapy stuff (PT is supposed to help?!-jk) Anyway I thought that the misery my legs were causing me was RLS…nope it turned out to be MS. Like I said I’m glad I found this site. My philosophy is: Laughter is the road to longevity! And Shemp is my all time favorite stooge!
Thank you so much Erick! I’m so glad you checked out my website and that it made you smile! I tried to send a private message to thank you but it didn’t go through. Hoping the drugs are starting to help and that you may be feeling a bit better. Please come visit the site again soon.
Hello Yvonne
I just came across your MS article about being a nightmare movie. I totally can relate I sometime I think to myself what the heck has happened to me and how have I gotten through the past 20 years without losing my mind. Some days are normal and some days I just want to lay in bed all day and watch Ferris Bueller’s Day off dvd and not be bothered and just turn my cell phone off just to get some peace. It made me laugh when you said something about getting the kitchen clean first and at the end you mentioned finishing the dishes when the sun was going down. Lol Om Gosh, I can start cleaning the kitchen and laundry around 7am and next thing i know I’m watching a YouTube video while I’m cleaning up my closet & the next thing I know I need to get in the shower and get out of my robe before my husband comes home by 4:30 and I’m exhausted from running around in circles all day and normally I have no idea what I’m going to make for dinner, after I cook I try my hardest to get the kitchen cleaned by 8pm and get in bed around 9:30 and takes at least a hours to get to sleep and then get up and it starts all over again. So I think the appropriate name of my movie would be Groundhog Day, I say ……Groundhog Day because whenever I talk to somebody or run into somebody it’s the same conversation and questions about how are you feeling blah blah blah , how are you ? You look so good bla bla bla….you don’t even look like you’re sick that’s the one thing that gets under my skin. I feel like people just need to be more sensitive , and not jump to conclusions when you see somebody like me , maybe limping or my balance is off and I grab on to something and they look at me like I’m drunk, I’m surprised the police haven’t been called on me over the years in a parking lot at Homegoods.
So I have come to a conclusion we really need a sense of humor to be able to cope with the general population unaware of chronic diseases. And I don’t even blame People for not understand because honestly I was 26 and when they told me I had ms and I had no idea what the heck they just told me………multiple sclerosis!!
I couldn’t even spell it lol, I asked is there a pill for that ?? 😂lol at the time Avonex was just coming out.
ya gonna laugh at the whole thing and hope for the best and pray that someday there’s a cure or at least figure out what’s the cause.
Sincerely, Jennifer from NC
Thank you so much for sharing Jennifer- I really appreciate it! And Groundhog Day as an MS movie is perfect! Can’t believe I didn’t think of it myself… Thank you too for checking out my website- I hope you’ll come back again. We are in this together my friend!