Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Editor's Note: Oops, the carnival may be a week late, but some material is timeless. My apologies for the delay. By the way, if you have posts you'd like to share in next week's Carnival, please send me the links.
by MBD of Move in Circles
He was surfing the net after dinner. I sat on the couch with my pen and legal pad and said, “Are you up for being interviewed tonight?”
“Excuse me?" He looks up and sees that I'm serious. "No, not really.”
“Okay, but we’ll do it anyway, k? You’re never going to be up for it so we might as well just do it now.”
"I guess.”
“So can I go ahead with my first question?”
Long pause, then he replies, “Hey, I think we should open up a new savings account.”
Me, not willing to change the subject,“So, first question: do I ever annoy you?”
“Sure. When you interview me about stuff.”
What’s the most difficult part about living with MS?
Not being able to walk. Kind of inconvenient.
There’s a lot about MS that people don’t know about. What are some of the things about your disease in particular, since every case of MS is different, that your friends and family may not know?
- Heat is my kryptonite. Any relief from heat is like a power-up on Super Mario Brothers. Like getting in a cold pool in the summer, it’s a complete recharge.
- I wear a toe separator daily because my toes clench up and it's hard to walk around on curled up toes.
- I've been constipated for 4 years. Try that on for size. You can quote me on that. You can print that. [Laughing]. Which also has its benefits: you use less toilet paper.
- I get fatigued very easily. I'm tired frequently throughout the day. I could take a nap at any second of the day. Except for at night when I want to sleep. I go months at a time without sleeping through the night.
- I hurt myself every time I get into the shower. I can’t lift my leg up and over the bathtub, so I slam my shin into it every time.
- It’s also difficult for me to climb in and out of bed because I can’t lift my legs up.
- I use a cane on a daily basis, I use a walker sometimes—that’s very new—and I use a wheelchair for long-distance things that would be impossible for me to do otherwise—like exploring New York during our vacation.
- I don’t have much balance. Even when just standing still. I could fall over with a strong gust of wind…which is where my walker comes in handy.
- I take 7 pills a day.
- And I just can’t go somewhere spontaneously. There’s a lot to think about beforehand—like where’s the nearest restroom? Will there be stairs? Is it worth expending all of that energy? You have to think ahead.
Why don't you sleep through the night?
Because I wake up to use the restroom. Four different times. An interrupted sleep is not a restful one.
Other than your trouble with walking, what are one or two other symptoms that are the most bothersome?
Having to go to the bathroom frequently. And twitching.
For those that don’t know, explain a little more about your bathroom and twitching problems.
My brain just doesn't communicate smoothly with my bladder, so it doesn't empty fully, or quickly, and the process just doesn't work like it's supposed to. And the twitching and muscle spasms are caused because the myelin (insulation) on my nerves is frayed. It’s like a sparking or frayed wire, which causes my legs to twitch and spasm. During inconvenient times. Like when I’m trying to sleep.
What’s the best part about having MS? If there is any?
It gives me perspective on life. It helps me to empathize with people and to learn to put myself in other people's shoes. And it has helped me to become more patient, since I am literally forced to go slower.
What are some daily tasks that you dread?
Walking to and from the car. Walking anywhere, actually. Handling sharp objects or hot items in the kitchen.
Do you dread tasks like getting dressed, or getting in the shower?
No, I've gotten over that.
So mostly the big things then?
Yeah. Also walking from the couch to the stereo to turn it off, that’s hard because there’s nothing to hold on to. In general I also dread doing anything out of my comfort zone...anything that would throw me off. I have a routine, for example, always using the bathroom right before I leave the house, and I feel more comfortable going through those routines. I like to know what I'm going to do and anything that would put me off my course is problematic. I need to know what's in front of me.
Do you think that people have a good idea about the daily struggles you go through?
No. It's an accomplishment every day that I get up and live my life. Everything I do—going to work, coming back, getting back up to the apartment is a huge accomplishment for me. Including small tasks that you'd otherwise take for granted. Like, I think about falling when I'm brushing my teeth or with a Q-tip in my ear.
A Q-tip? Seriously?
Yeah. Seriously. And preparing food for myself is a struggle. Walking back and forth from the stove to the fridge or counter, carrying ingredients, with the ever-present thought of falling with food, or with hot stuff and sharp objects.
For those of us without MS, is there a way you can describe what you feel like physically so that we can try to imagine how you feel?
As far as the walking, I think I've pinned it down to comparing it to trying to walk around with cement blocks on your feet that never come off. And you have to go the bathroom—fast—but you've got these cement blocks on your feet. Also, just in general, picture your body not responding to anything that you tell it to do.
If there is one thing you could do on a daily basis that you can’t do now because of your MS, and one thing in general you could do, what would it be?
A daily thing would be, I would run. Even though I hate running.
And even though we hate runners?
Yeah. [We don't actually hate runners, we're just jealous of them].
What about a one time thing?
Learn to surf.
Cause you love the ocean?
Yeah.
What can others do to make life easier for you?
I never mind when people open doors for me. Don't ask me what's the matter with my leg though.
Yeah, but isn't that just a human reaction of curiosity? Isn't that your opportunity to educate people and raise awareness about MS?
Yeah. But I don't always feel like doing that.
Okay, what else?
Don't feel sorry for me, don't treat me any different. Don't ask me if I want a piggy back ride. I know people are trying to help move me, but literally the logistics of the piggy back ride don't make sense for me. I can't jump to get on your back, my legs don't bend to wrap around you, my legs just hang there. It doesn't feel good. It's annoying.
We know you are affected physically by MS, but do you feel the effects of MS emotionally or mentally as well?
Well, not being able to walk kind of messes with your head. That’s a big thing to wrap your head around. Also, people stare at me, and not just because I’m really really really good looking.
How do you feel when people stare at you?
I can’t blame them. You see somebody walking around funny like Frankenstein, as I've been told, you think, “that sucks” or “that's weird.” It's just human nature.
Have you felt that MS has held you back from accomplishing anything these past 4 ½ years since you’ve been diagnosed?
I've wanted to swim in the ocean the couple of times we've been at the ocean, but haven’t been able to cause my legs won’t move. But with your help at least I've been able to get into the ocean. I don’t like not being able to go on walks with you or riding bikes with you.
So mostly physical things?
Yeah. Being a little restricted at events, concerts, baseball games. Even though we've turned that into a good thing with handicap seating.
Are you happy?
Probably happier than I’ve ever been. No, definitely happier than I've ever been.
How do you manage to be so happy despite all of the obstacles you face daily?
Mostly the weed. Joking. Obviously because of you. You not letting me be defeated or down. And just being able to appreciate all of the good things that I do have that make not being able to walk seem minor.
There is a real connection between MS and depression, like any other illness. Are you depressed or have you ever been?
No, I get frustrated. Looking back, early on, maybe I was. I don't necessarily know, but I know mentally and emotionally I'm in a much better place than I was early on in my diagnosis. I don't know how much going through chemo had to do with that. I think it did have to do with getting chemo and how poorly I felt from that. And how up and down I had been physically.
What was the hardest thing about chemo?
Feeling like shit all the time. You just felt terrible.
Any good things about chemo?
I felt fraudulent going into the hospital for my treatments because you're surrounded by people who are literally dying; and I'm just in there because, “oh, I can't walk that good.” It's humbling. Once again, it makes you see there are a lot of people in the world suffering and some of those people don't have any support. It makes you think that you have it pretty good.
Have you ever felt angry or resentful that you were dealt this hand in life?
I was pretty angry for a while. The first couple of years. I suppose I was angry at God and didn’t ever want to go to church.
What about now?
I think I've reached the point of acceptance. There's no point in being angry; it's a lot more fun to be happy.
Do you feel that you have a relationship with God now?
Yeah. I mean, I think I always had before, but I've rekindled that romance. [Laughing]. One time, two times, three times my Savior. [South Park reference].
How has MS affected our marriage, if you think it has at all?
I feel a lot of guilt. To be honest, it's as much your disease as it is mine. I feel like I hold you back in doing things. At the same time, I feel like we've been through a lot of difficult things together and I know I can count on you for anything. We have more of an intimacy. I feel like we've become closer because of it. I feel bad because you've sacrificed for me. You spent your days at chemo with me when you should have been studying.
Do you ever feel like you ever use MS as an excuse not to do something you just plain don't want to do?
My philosophy is that I don't ever want to say, "I can't," but I know I haven't necessarily followed through with that. But I always keep that in my mind. And that's something that I'm always working on. There is one thing—maybe with Saverio—sometimes I’ll tell him I can't go solve a mystery with him because I can’t walk, but maybe, maybe, if I dug down I could muster up some energy and make it. But you know I'm trying to live my life by my favorite quote, “A ship in harbor is safe, but that is not what ships are built for.” But it took a long time to get here. In the past I might not even try.
Is it easier or harder for you now to cope with your disease than it was when you were first diagnosed?
Easier.
Even though you're worse off physically now than you were then?
Yeah. Maybe because you know now that you're gong to struggle and you lessen your expectations. You just learn how to cope. It's not as new; it's frustration but you just get used to it and adapt.
What are your biggest fears related to MS?
Falling down in front of a moving car and getting run over. Falling while holding a knife. Dropping boiling water on myself. Remember the hot gravy incident? And hitting my head on cement during a fall.
Do you fall frequently?
Lately I’ve had a couple more falls than usual.
Are you ever scared that one day you'll be wheelchair bound?
No. Because I had four years to think about that possibility and since I already have a wheelchair for stuff, it's something that you prepare yourself for. At this point I'm not going to think that I'm going to end up in a wheelchair. I'm going to hope that I don't. It's not a fact that it will happen. It's possible, probably probable, but not a fact.
What are your hopes and dreams?
I'd like to go on some fun adventurous vacations with you. Anywhere with a beach, more baseball road trips, Napa Valley. I'd like to just live a fun life.
Is there anything that you have accomplished in the 4+ years since your diagnosis that you may not have thought possible?
I got married. And went on an epic baseball stadium road trip. And swam in the ocean...kind of. Kind of.
Am I annoying you now?
No. I love you.
Alessandro was diagnosed with Multiple Sclerosis in August 2007…two years after we met and 1 year, 364 days after I knew I would marry him. This is the first of what I hope will be several blog posts, which will touch upon his life with MS and the trials, tribulations and triumphs that come along with it. We’ve got lots of ideas and stories to tell…it’s just a matter of organizing our thoughts. Thanks for anyone who reads and who is interested in our story.
This concludes the 108th edition of the
Carnival. The next
Carnival of MS Bloggers will be hosted here on March 1, 2012. Please remember to submit a post (via
email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 28, 2012.
Thank you.
