MS Sucks

Multiple Sclerosis attacks the Rolling Stones

 

It’s not like anyone reading this title is going to be surprised or argue with me.

MS doesn’t suck. What are you TALKING about? You are out of your mind!”

I have known this fact a long time as my sister, who had been living with MS for eight years, filled me in. To make sure there was no confusion, my first neurologist also informed me of this fact.

“I’m not going to lie to you, MS sucks.”

I try to take the suckiness in stride for the most part, hence my blog posts where I beat up on MS by making fun of it. But now MS has gone TOO far!!!

There is so little that makes me cool in this world and MS is seriously threatening my cool nerves and I am mad!

As you know from my prior posts, I am a Rolling Stones fan. Ok, I am technically a Rolling Stones addict. How anyone can not be a fan is one of the great mysterious of the world. These guys have been playing incredible classic rock music for over 50 years!

 

When the Beatles were singing about how all you need is love, yet biting each other’s head off in the studio, Mick and Keith were writing non sappy songs, beating each other up, and then going back to record their non sappy songs for over 5 decades. And like it says in scripture, “and on the eighth day, God created the Rolling Stones.”

So here is my MS problem.  The Stones will be in Boston, within two hours of me, breathing the same salty sea air as me and MS is trying to keep me away!!!

Multiple sclerosis is trying to attack my time with Keith and the boys in several sucky ways. First, the physical factors-can I last a whole 2 hour plus concert without having to run to the rest room a million times? Even if I can narrow my evening bathroom trips to something more normal, say 2-3 times in that span, what songs will I miss? Will I be able to find my way back to my seat?

Speaking of seats, I sit better than I walk and walk better than I stand. But you don’t sit at a Stones concert. It is impossible. How will my legs fare after 2.5 hours of standing in place dancing?

 

On a more serious note, the concert will be painful. As incredible as the music is, my MS can only tolerate certain decibels. OK, if the decibels are filled with classic rock by the icons of classic rock, I can deal. But there is the other noise/din that will continuously assault my nerve frayed brain.

Even the pain that the commotion would cause would be worth it. An MS flare, major pain and exhaustion beyond any I have experienced before would be worth it for the sake of the opportunity to see these guys one last time. (In spite of the six other times I have seen them perform one last time.)

But here is where the real problem lies. My dear friend, a fellow Stones addict-she is even more addicted than me if you can believe it- has been and would be my fellow concert goer. She is not able to drive at night. MS does not allow me to safely drive in the city- too many things coming at me leading to lack of control and major sensory overload. I could drive to the outskirts of Boston and we could take the subway in, but it is highly unlikely that after the concert I will be capable of managing the train and even if I did, unlikely I will be able to drive at that point.

 

My friend and I were trying to sort this out. Most of our priors Stones gigs were chauffeured by her husband. When they first met, he was seriously courting her and a concert was the least he could do to impress.

By the next show, they were newlyweds and were in the bliss of the newly married, eager to share this experience together; with me tagging along of course but I tried to stay out of the way of the mushiness.

Years later, they had a baby and her husband was so grateful for their first healthy child that the least he could do was take her and her friend to the show. Upon the birth of their second child, they desperately needed a night out and Stones were just the thing.

Now, after being married forever, her hubby is less enthusiastic. Perhaps he has forgotten his wedding vows, “I, newly besotted husband, promise to love, honor, and abide by my wife’s Rolling Stones addiction for as long as we both shall live.”

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I will have to remind him.

But until he re-discovers his desire for some more Stones excitement, my friend and I tried to come up with another plan. We talked about the problem the noise/commotion factor would cause me. She asked if ear plugs would help. They would, and I have some clear ones, but their help would be minimal at best.

I thought of who else might be willing to drive us. My dad drives me to my city doctor’s appointments. And he does have good taste in music. Perhaps he wants to go? The image of me enjoying the show with ridiculous ear plugs and being babysat by my dad sent shivers of extreme nerdiness down my spine.

Damn you MS!

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But alas, my dad is not free that night. And frankly, neither are the Stones which is another way MS is trying to keep me from going. Due to MS, I do not have a steady income and 50 years of the best music in the world doesn’t come cheap.

Just when you think you might possibly have MS figured out, it throws you another curve. In the scheme of life with MS and its worst case scenarios, I suppose losing what little cool factor you have isn’t the end of the world. But I will fight it all the way.

If I am not able to make it to the show, that night I will blast Exile on Main Street from my tiny speakers and lift a shot of Jack Daniels to my favorite band.

You don’t think Keith will mind if I use tea instead, do you? Whiskey gives me a killer headache.

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One week after the death of my friend, a fellow MS’er, and just days after the tragedy in Boston, I am in desperate need of a good laugh again. If you are too, I hope the above blog helps. If not, look for some of my blogs live on YouTube by typing in my name. I actually sing in one of them. That should get you laughing for sure!

 

 

Image courtesy of [posterize] / FreeDigitalPhotos.net

Image courtesy of [Tanatat] / FreeDigitalPhotos.net

Image courtesy of [Suat Eman] / FreeDigitalPhotos.net

 

12 responses to “MS Sucks

  1. You nailed it girl! MS Does Suck!!!

  2. Susan Goldberg

    I too have MS and experience it in various degrees of….suckitude. Being a musician and halfway deaf, I have no problem with decibels. But the having to pee constantly, the exhaustion, etc. etc. I can TOTALLY ID with. I avoid lots of situations that would embarrass me – and sometimes that means to just stay home. Sigh. Well, I thought I had something funny to say, but not today, I guess. My work is challenging, exhausting and I can do it infrequently. Best I can do. Cheers. MS sucks.

    • Thank you for checking in Susan, I hope some things in here made you smile… For me, making fun of MS or my life with MS helps me to feel like I am fighting back! Silly probably, but I sometimes feel like I am beating up on a big bully with a big old giggle stick!

  3. I would wear ear plugs no problem. As for your bladder issue, slip into an adult diaper. Heck, most of the Stones are old enough to wear’em, so why not you!

    • The Stones are too cool to wear adult diapers! This has brought a whole new level of MS trauma! Although, according to the TV commercials, they are making Depends cooler now…

  4. Hi, Yvonne!

    Just found your blog through My Odd Sock. Haven’t had much more than a quick look around, but I LOVE the idea of laughing (when appropriate) at MS. Just wanted to let you know that *I* could have written that bit about the bathroom/concerts. What a PIA to always have to worry about that, which I do. I just started taking a drug that’s supposed to curb the urinating-every-15-minutes nonsense…so far, it’s maybe cut it back to every 20 minutes. Sigh.

    Ms. CrankyPants

    p.s. Very sorry about your friend…

    • Thank you so much Ms. CrankyPants! I have seen your posts on My Odd Sock and am thrilled that you have checked out my blog too- you can never laugh too much as far as I am concerned! Welcome and I hope you enjoy. I take similar medication at night to keep me from getting up 20-30 times. Now I only get up about 5-10 times so it helps… It doesn’t help that I am supposed to drink more water but of course, my MS memory only allows me to remember to drink water late aftinernoons. Ah well, one day we will figure it out. And when we do, it will all change,,,,

  5. MS does suck. There are so many things I’d like to do and can’t. What really sucks is Stones concert in Chicago. My boyfriend assumed I couldn’t go so he is going with another women. Yea you are right MS sucks big time. Good Luck to you in your fight.

    • Wow Left Out, that really blows! Why not ask you? Part of my huge frustration in living with MS is when people don’t ask. They just assume what they think they should assume, and then get mad at you if their assumptions are not correct. I hope you told him what’s what! Thank you for checking out my blog and checking in on the Stones connection… Good luck to you too….

  6. The concert we all went to at the then “Sullivan stadium” was awesome remember 13 rows back center stage…. I hope that you both do get to go and no I don’t think keith would mind you having tea instead of whiskey. I haven’t been to a concert in years, but boston is just to much for me to handle especially on a night the kids are here…”can’t always get what you want” 🙁

    • I remember it well! It was my second Stones show and it was VooDoo Lounge and we had no idea how great our seats were until we got there. And it was cold and poured all day but the rain stopped just before we got there and the show was amazing! I have the picture of the three of us in our Stones shirt hanging up. “But if you try sometimes, you just might find, you get what you need….”

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