Wind Quest

Think back to when you were eight years old. What did you consider awesome back then? And how does that compare to what you consider awesome now?

Certain words or phrases take on different meanings as one journeys through life. I started thinking about this the other day, when I told my wife I needed to find my second wind

When I was in high school, having a second wind usually referred to finding the energy to struggle through another two-a-day football practice that dominated my month of August.

In college, finding a second wind might have been referenced when I forced myself to stay awake while studying for Finals.

Years later, married and striving for success in my career, what defined discovering a second wind had once again transformed. I often left home at 7 a.m. for work and didn’t return until around 10 p.m. I was tired from a long day at the office, followed by an evening class in graduate school, but I still needed to muster up the energy to study for a couple hours before starting the cycle again the following day.

TROLLING FOR ENERGY

Fast forward to 2015, more specifically a few days ago, when I uttered the phrase second wind to my wife. I was using it to describe the energy I was hoping to find to go take part in a family activity. But unlike in years past, I wasn’t exhausted from studying late into the night, or running wind sprints in the unforgiving heat of August.

Instead, I was lying in bed, tired from taking a shower and shaving my face...and was struggling to find the strength to get up and go to lunch with my family.

In that moment it dawned on me, the phrase second wind, describes pretty much every moment of every day for most of us living with multiple sclerosis.

On any day, by mid-morning, I’ve already had to dig deep for a 4th or 5th wind. And although I’ve never tracked it, I’d wager that most days involve at least a dozen instances of finding yet another wind.

My wife understands this, as do our children…to the extent that children can process the struggles with my health and energy level.

At times, it can be hard to accept – I miss what it feels like to have energy in reserve. In my best moments, I’m present and able to focus on the moment at hand until I’m stung by a sudden waive of fatigue. I can literally feel the energy leave my body.

I can almost envision a troll-like figure, waddling up to me, laughing hysterically – exposing its decaying teeth. It wears a shirt that obnoxiously reads, “Mojo Stealer” and it merrily sticks a needle in me to sap out all of my energy.

AWESOME SAUCE

Vincent

Thirty years ago, the list of things I considered awesome probably included slimy bugs, the Atari 2600 and the movie Ghostbusters.

Life has changed a lot since then…and in 2045, I’m sure I’ll look back with fondness on the silly things I considered awesome in 2015.  

With a few exceptions, of course. For example, you know what would be awesome

  • …waking up one morning and not already being tired
  • …spending time with my children without struggling to keep my eyes open
  • …standing, for more than a few minutes, without feeling shooting pains in legs 
  • …actually looking forward to a holiday celebration or one of my children’s birthdays, instead of fearing I won’t have the energy to enjoy it
  • …losing the guilt I have from seeing my wife do more to support our family because of my disease
  • …having a day – even just half a day – go by that doesn’t require me to find a second wind

Those definitions of awesome will stand the test of time. 

Unfortunately, I’m getting tired just thinking about it, so please excuse me while I go fetch myself another wind. It’s going to be awesome!

 

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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com.

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    31 Comments

  • Chantelle   Aug 13, 2015 12:37 PM
    I could not help the tears as they rolled down my face, wow! This is exactly what I tried to verbalize to the Social Security worker who called me last week and asked "so what are you able to do on a day to day basis with MS?" I couldn't help but be honest, "not much of anything." As a single mother my 14 year old daughter has taken on the majority of the everyday responsilbties that used to tackle with a couple of hours. I'm grateful for her as I read your article she does what your spouse does & had been for the last 10 years of her young life. I often feel like a burden but she never gives me any reason to feel that way, she to understands when I have to take a break in the middle of preparing meals, she is such an angel as all family & friends are that deal with loved ones who live with MS everyday. Thank you for breaking down what seems so hard to explain at times.
  • Patricia   Aug 13, 2015 12:39 PM
    You described my MS struggles to a "T" except that my energy bandit opens little faucets on the soles of my feet and the energy in my body drains faster than Niagra Falls can flow! It can happen in a millisecond and sometimes It is a battle not to fall face-first into my dinner plate! Even with all that goes on with MS, there are some much nastier diseases out there that I am glad to have escaped.
  • kerri   Aug 13, 2015 1:10 PM
    I managed a second wime today and baked some cakes with my kids. Felt fantastic. Two hours later though my legs dont want to work and i just want to sleep. I keep thinking positive.fingers crossed One day we will all be cured. Nobody can try to understand ms unless they have it you have no idea. X
  • dakota   Aug 13, 2015 1:15 PM
    Yes! Having just gotten back from a vacation in Galveston, TX at the beach, this has been on my mind a lot. I hated feeling like I was wasting precious time by having to sit things out or take a nap now and then. My husband and my 12 year old son understand, but it was more like I was letting myself down. My body was limiting the amount of fun I could have. I have so much energy and feel so healthy when I'm actually IN the ocean, but the process of getting out and trekking back up to the beach house would leave me so drained I'd need help rinsing off and dressing. I couldn't even get in one last dip on our last day there because the day before had been a heavier surf day and my "wind" hadn't come back. If I could just *blink* myself down to the shore I'd have been great, but walking through sand dunes was completely draining. Not to mention the toll extreme humidity and heat took. However, I did have a secret weapon this trip that I didn't have last time.. my intrathecal morphine pump. It was a godsend! I don't know how I survived the last decade of having MS without it!
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    udean1978  Aug 13, 2015 1:59 PM
    I love you comment I made may they day,because I lying here in bed trying to decide whether to go to get some ice cream or go for a stroll in my chair
  • Belynda   Aug 13, 2015 2:08 PM
    Very touching story. My five-year doesn't understand that I'm not well, but he's always there to remind his sister, who's four, that Mommy needs her nap.
  • Leanne   Aug 13, 2015 2:12 PM
    Try fambyra for legs, given me a new lease of life.
  • Connie Hunt   Aug 13, 2015 2:36 PM
    When I reached the point of fatigue that it was an effort to even breathe I always said,"It's like someone pulled my plug and drained everything else." It was years before I had to retire early but toward the end I was actually working IN my wheelchair.

    There is one difference with us however. My 'friends' never visited to see if I needed anything or called to see how I was. That was 7 years ago. That hurts. Perhaps they were uncomfortable seeing me in a w/c. I'll never know I guess.
  • Timothy Marlow MD   Aug 13, 2015 3:29 PM
    I feel you brethren. Very well written.
  • Christine   Aug 13, 2015 3:51 PM
    These are exactly the words I would use to describe myself, with one exception. I was diagnosed with MS in 1983 and am 52 years old. I was never blessed with children. I used to long for that life and grieve for what I was missing. As my MS has worsened over the last 8 years, I understand and "accept" what God's plan has been. I have 11 nieces and nephews for whom I am so very thankful!
  • SmartyPants   Aug 13, 2015 4:30 PM
    Your story rang through, it took me back to my childhood and made me mindful of what was important to me back then and made me ponder the different stages of our lives. Thanks for taking me back and giving me the strength to keep going. Your words touched many of us. Keep on blogging you do make a difference. And think about the countless others who read the story and didn't comment. We are out there reading your every word. Ever think about writing a book about your life?
  • anne marinelli   Aug 13, 2015 6:57 PM
    So well said......it is so hard to articulate what MS makes you feel like....you said it perfectly ...I remember my neurologist saying to me the two main reasons people with MS leave the workforce are crippling fatigue and cognitive issues.......I left my corporate accounting position for exactly those reasons......the problem with fatigue is it's a hidden disability.......no one sees it yet it robs us of so much of our lives
  • Susan   Aug 13, 2015 7:07 PM
    Dear Michael, Your message was inspirational! Our daughter, 3 children, married, living in Houston, TX was diagnosed this past Christmas. Thank you for your blog and your vivid description of your days. Your "sharing" has given me MY second wind. Thank you.
  • Amanda   Aug 13, 2015 7:16 PM
    Thank u for sharing , I too have been diagnosed with MS.
  • Jennifer Avitia   Aug 13, 2015 7:37 PM
    Wow.... Incredible, heartfelt insight into MS and unbelievable writing !! How strong you guys truly are .
  • Dr D Hall MBChB   Aug 13, 2015 8:39 PM
    pretty well describes my life Giving up Practice was tough too,but I guess you ay have had similar experience
    David Hall
  • lisagrunwald  Aug 13, 2015 8:44 PM
    What would be truly awesome is if non-MSers could all read this and thereby GET what MS fatigue is really like. And not just that endless need for a second, third, and fourth wind, but the frustration of trying to explain that just because you did THIS doesn't mean you have anything left for doing THAT. Thank you for writing this.
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    evamarsh  Aug 14, 2015 8:37 AM
    The summer I was 8 I began to experience strange symptoms that were explained away, I was told to run outside and play - everything will be fine! and indeed the symptoms were gone in a few days or weeks. When I was 16, I lost the sight of both eyes, and I played in the yard with my dog. My sight returned in a few months. The doctor said I did too much reading! At 22 I was immobile from the neck down and doctors said I didn't have long and would never recover - it was MS!! I recovered and found research that explained how myelin repairs with movement. I am now 71, mobile and active - recovered from all symptoms and still trying to share the research the system ignores. evamarsh.net
  • Terry   Aug 14, 2015 10:00 AM
    I am 52 and have just been diagnosed with MS.. but they are not sure what kind.. am going for the lumbar puncture in three weeks.. my issues are spasitity, weakness/balance in walking, and the exhaustion! I am also dealing with the 2nd and 3rd and 4th wind thing..and wake up exhausted.. been wondering why that is.. and was thinking I needed a new bed.. but now -- this is because of the MS? ugh.. still working full time, but may need to see if I can work from home one day per week... wish me luck
  • Kim S   Aug 14, 2015 10:40 AM
    Wow, you are so spot on with all of that! I really relate to worrying about family events or even vacations, not knowing if I'll be able to handle or enjoy them! Thank you for reminding me I'm not the only one going through this!
  • Kristi   Aug 14, 2015 12:15 PM
    I'm almost a year into my diagnosis and having had a "superwoman" mentality all my life, this has been a real shock. In my previous career, I spent 22 years in our local media, 14 of those years hosting and producing my own television show. There is absolutely no way I could do that now. I have 4 kids, three teen boys and a 10 year old girl. Fighting a headache and nausea yesterday, I had to do a massive grocery store trip because, well, 3 teenage boys who do their best to eat their weight in food daily. It took me two hours at the store and a full 45 minutes at home to unload and organize. I was completely spent, just done, and had to lay down. I wasn't able to function anymore. My husband is amazing, I couldn't do this without him. But in sheltering my kids from the toll this disease is taking on me, I am doing more harm to myself. I write this from bed, because I am still here. I have got to find a way, without being fatalistic and scaring them, to get my kids to share more of the load. They are used to living with "superwoman", but "superwoman" had left the building...
  • Tony Dinsmore   Aug 14, 2015 1:57 PM
    I have had ms for 20 years now. What was robbed from me was my work,logging,carpentry,hunting and most importantly my wife left me after 291/2 years.Now I face this alone
  • Catherine   Aug 14, 2015 3:18 PM
    I'm a month into my diagnosis and I feel like a huge weight has been lifted off my shoulders knowing I finally know what is wrong with me. I've just turned 25 and have been told I've had ms for quite some time. I start my first proper job in September after qualifying as a teacher, I can shake the feeling that my ms will defeat and make it very difficult for me. I'm currently on holiday and apart from feeling utterly exhausted I feel happy and healthy, my boyfriend and friends are so helpful and understand that I can't join in with all the water sports and other things as I just don't have the energy. It is very difficult accepting that my ms limits the amount of fun I can have due to me feeling absolutely exhausted. But I just keep pushing forward as my dad is very poorly and I must help take care of him whilst caring for my own health and ensuring I get enough sleep.
  • Sally   Aug 14, 2015 4:18 PM
    I have never been able to properly explain how I feel, but you have just done it for me and put it in words perfectly and for that I truly thank you :-) when someone next asks me how I feel, I will say to read this. All the very best to you and your family.
  • Wayne Johnson   Aug 15, 2015 1:34 PM
    Thank you
    It clearly defines how I feel most every day.
  • Denise_A_  Aug 16, 2015 1:14 PM
    What a wonderful description of how it feels on most days since I have had MS. Unfortunately, most people do not understand how it feels or why I cannot do all I was able to do even a year ago. I am no longer able to work and since I live alone and am in a wheelchair now all the time I have to hire people to do a lot of what I once could do. And I have lost so much independence, not the least of which is my ability to drive. I moved from Manhattan, where there was great public transportation to Long Island, where there is almost none. I am currently advocating for better transportation for the disabled but feel guilty when I cannot do as much as I know needs to be done or when I cannot make a meeting.
    Do people ever say to you that you need to accept your illness? Remember all the achievements you used to have? Don't be so down about yourself,you are still doing a lot? I just want to tell them that what I want to do is get down on the floor with my two grandsons and play a game, or pick them up and take them to the beach or a park. Or I want to wake up one morning, take a shower, and not spend the rest of the day in bed, when I know there is so much I should be doing. I know I cannot be the me I was before 1998, when I was vice president of a university and in a loving relationship, living in NYC, walking all over the place and enjoying the energy and life all around me. I don't even want that. I just want to be me, the me I am now and not fall asleep in the middle of a day being me. Or have my 7 year old grandson want to know why I can't play with him and his brother or why my legs don't work. He remembers when they still did,just 4 years ago.
    Thank you Michael, you summarized a lot of my feelings in a wonderful and clear way, and encouraged me to write to you about those feelings. Wishing you energy and pleasant days!
  • Jean   Aug 17, 2015 6:39 PM
    This is so me lately. Get up, take a shower and take a nap. Energy comes and goes, seems to mostly go. My brain says, go to the pool, my body says, the walk is too far and having to walk back is too much. So frustrating.
  • Tully   Aug 27, 2015 1:10 AM
    This was the first blog I came across, I've been attempting to focus all day, a dozen trips into the kitchen for my reading glasses only when I get there I've forgotten why & then distracted to something else & before I realise it I'm chasing my tail more times than our Springer Spaniel. I'm not sure where you are now, that was 7 years ago. I have 10 spots on one side 15 on the other, periventricular, subcortical etc & tick on all the symptom boxes. Only I'm a single parent & I'm failing at my job terribly & needed to find answers somewhere to explain why I'm losing my mind.
  • lm333  Sep 9, 2015 6:13 PM
    Hi Michael,
    Enjoyed your blog very much! I can SO relate. :-)
    What would be awesome for me would be to have one day as my former self (pre-MS).
    I know I am dreaming...., but that would be awesome. :-)

    Lisa
  • Avatar
    butterflies4life  Sep 14, 2015 11:58 AM
    I to am in the same emotional state of mind. I wake daily to find myself frustrated that I am no longer the woman I once was. It hurts to know that I am no longer able to get up on a whim and get the family moving or take care of the grandchildren like I dreamed of. It breaks my heart to know that my goals and dreams are no longer reachable. That the me I once was is no longer there. I want me back, where did I go. Your story brought me to my knees and made me realize that I am not alone in this fight. I when I cry out to God, it's not just me he hears. He hears us all. Our pain may all be different but our suffering is the same. Thank you so much for your story it made me finally cry out and give me the much needed strength I have been fighting for.
    Sincerely
    Brigette Roark-Schulz
  • Laura   Oct 12, 2015 9:35 PM
    I just received my lastest MS Connection finally because it was forwarded from IN to San Antonio to me. We just moved here, and your article on claustrophobia hit home with me. When I read further postings you made, I could relate to a lot. I too was diagnosed in 2008 (with symptoms much earlier), and just had my second child before being diagnosed. I've never posted on a blog like this and am only doing so because your putting yourself out there was helpful to read, knowing others are going thru the same things. Since you're in San Antonio, if you know of a good support group I'd love a contact. I usually participate in MS Walks and would love to know info if you or anyone has that info. Thanks & best wishes!