The Autumn Redemption

As fall begins, I can’t help but feel somewhat victorious. I survived – or to be more specific, my MS survived another grueling summer.

When I was younger and living on the East Coast, I had bittersweet relationships with the other three seasons. 
  • Autumn always brought changing colors and the start of football season; but it also signaled the start of school, studying, tests – and lots of raking!
  • Winter had excitement from snow, sledding, my birthday and Christmas, but it also had really, really, REALLY cold weather. 
  • Spring ushered in warmer temperatures, wearing shorts, flowers blooming; but unfortunately, it was always accompanied by days and days of rain.
But summer... well, when I was in my teens, there was really no downside to summer. School was out, we played outside until it was dark, pool, went to the amusement parks and had fireworks on July Fourth – I never wanted it to end!

But now, summer has become my own prison, and MS is the cruel, heartless warden.

For many with MS, heat or humidity can worsen symptoms. In some cases, it contributes to new relapses.

During the summer months, I often struggle to find energy to get up off the couch, let alone take part in family adventures.

I take medicine (daily) to help with my energy levels, but it’s not enough.

Without the meds, I can barely keep my eyes open. With them, my eyes squint wearily as my body begs for rest, on a bed, couch, floor, whatever – the location doesn’t matter, as I crave peace, quiet, comfort… and relief.

When I force myself to head outside, my body recoils the moment I encounter the hot, summer air.
I manage any excursions by finding shade, wearing ice packs around my neck to cool my body, bringing cold bottled water wherever I go and not pushing myself physically once the temperature exceeds 85 degrees.

Walks with the family, running errands and other activities are planned for early in the morning or late at night before sunrise and after sunset.

Exposure to the direct sun usually makes me dizzy and sometimes I have to literally lean on my wife to get from point A to point B.

My vision becomes blurry and will remain so until my body finds rest and cools down.

During the summer months, my risk of a relapse is high. The past few summers I’ve been lucky, but not so this year. For many weeks, I was unable to use my left hand for basic functions like tying my shoes, buttoning my shirt or cutting my food.

Did factors other than the heat cause this exacerbation?  Possibly. But the raised temperatures certainly didn’t help.

Mentally and emotionally, I struggle. My body screams rest, but my heart pleads to savor the long summer days with my family. 

My children want to play, go to the pool – be carefree kids, and I don’t want them to remember their summers as worrying about their daddy’s health or feeling like they were punished by my limitations.
My wife loves to eat outside, entertain friends and family, or take our children on new excursions, and I often fear that my body will fail her.

I do feel guilt, but mostly it’s just frustration. I wonder why, why does MS attack the things that matter so dearly to me?

MS is a punishing warden and that never takes a day off, bringing with it symptoms and relapses, no matter the season.

But as autumn approaches, there is an extra pep in my step and glimmer in my eye.  The first day of cooler weather, I have a tradition, much like Andy Dufresne, after escaping prison in “The Shawshank Redemption” – I stand tall, with my hands held high towards the Heavens, and rejoice.

In that moment of triumph, I feel like I’m 16 years old again… and nothing can stop me.
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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 and follow him on Twitter.

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    41 Comments

  • Dave Maskalick   Sep 15, 2017 12:26 PM
    Michael Wentink,

    I have summer memories similar too your own. You are blessed with the woman you love and the children you love. I was diagnosed with progressive MS in 1987, seven years after I married the woman I still love and three years after completing my PhD and starting my research and development career in biotechnology at a pharmaceutical company. I had to take early retirement seventeen years ago. Today I still feel bad that I am a burden but my wife continues to care for me and understands my limitations. I continue, as best as I can, to participate in and contribute to the activities in which we share an interest. We continue to share life’s ups and downs together. I’d wager that you, your wife, and your children will also continue to share life’s ups and downs together too.

    Dave Maskalick
  • Samantha   Sep 15, 2017 5:58 PM
    Michael,

    I just read your whole blog and if I could write like you it would be just like my story, except I didn't work for a fortune 500 hundred company. You have an amazing story that I am sure everyone with MS can relate too. I actually chose the Avonex shot once a week over a pill that would have reminded me everyday that i have MS.
    I have always hated summer and now with fall arriving I am outside as much as possible especially in the winter. Thank you for taking the time to reach out and help us. My MS is invisible and everyone thinks I am ok. What they don't see are the 12 lesions that are hiding deep inside my brain. 2 are on emotions and a huge one on short term memory. I am afraid to ask where the other 9 are. So I take it day by day and hope the others stay dormant. MRI in 2 weeks and I know who you feel when you wait to see if there are more or the same. Either way I know its progressing.
    I will listen and read your blogs as I loved it when you told me about Mad Men and the music to House of Cards. Actually the whole blog was amazing! Thank you for helping me today and I agree we should have some way to great other MS people like AA does! I just give big hugs to people as we all need to feel loved.
  • Avatar
    clembrey  Sep 18, 2017 1:38 PM
    This was my first summer with MS. I received my diagnosis in July, and had it confirmed in August. Reading your thoughts gives me an uplifting feeling knowing that this coming fall will bring me more opportunities to enjoy outside activities with friends and family.
  • Shawne   Sep 21, 2017 5:35 PM
    Yes Yes Yes! Summer used to be fun. No more. I highly recommend purchasing a cooling vest. There are many styles to choose from. If you quality financially, MSAA will send you one for free. For the fashion forward women our there, I made a newspaper pattern from my cooling vest, and sewed some stylish ones with great looking fabrics. I wear one to all appointments in too hot doctors offices, too hot homes, and it gets me through times I have to go out in the summer for short periods of time. I can not tolerate any temps over 70 now, so I love fall, winter and spring and hunker down in my AC during the summer.

    Some folks with MS do not realize how much temperatures affect functioning so thanks for writing your blog. Helpful
  • Cynthia J Jones   Sep 21, 2017 5:44 PM
    Thanks for this article. I can relate to what you have written. I feel the same way.
    Diagnosed in May of this year. A real shock to me that I would even come down with this type of demon. It has turned my world upside down because I used to be so active and on the go. Not now. My world has come to almost a complete stop.
  • Leah Godsey   Sep 21, 2017 6:59 PM
    I enjoyed and sympathize with your post. I dread summer for 9 solid months and feel a new surge of life when the weather cools. Then there's the added benefit of football which I love!! I'll watch anybody - pro or college just because I love the sport. I've recently had to stop working, (I am a counselor) due to the stress and all the lovely symptoms that accompany. But I'm learning a new normal and that is ok for now.
    Enjoy reading your thoughts,
    Leah
  • Tany Goeres   Sep 21, 2017 7:10 PM
    I feel the same way, Im feeling a bad relapse now. But usually feel pretty good in the fall. For the last 6 years once the weather temperature is over 80 degrees in the summer I end up with a fever where my head is 101 all summer. I can't go outside until evening and even then I have to get my head cold wet to regain a functional level
  • Rick Peery   Sep 21, 2017 7:24 PM
    i understand i had to sell home i spent several years owning .because of the heat i used to love
  • Carolyn Stevenson   Sep 21, 2017 7:44 PM
    I can absolutely relate. I was diagnosed 5 yrs ago. I'm still learning. My last relapse was 2 years ago until July of this year where another relapse left me on the couch after work and leaving me very exhausted along with a lot of symptoms. I gained 25 pounds which I could not afford to do. Without being able to go to the gym and exercising in a pool those pounds came on quickly. Thank God for my neurologist who will have me on IV IG therapy which is my miracle drug as steroids don't help me. These infusions take my symptoms away and let me feel like myself again instead of feeling hopeless, useless and guilty. I'm glad you posted your story. Not like I want anyone to ever feel like I do but it helps me cope with disease and know there are others out there who get this awful disease process. People who don't have it just don't understand how quickly symptoms can come and go.
    God bless! Looking forward to reading other stories.
  • Avatar
    Michael Wentink  Sep 21, 2017 8:00 PM
    Thank you all for your wonderful comments! Please keep them coming and feel free to share my stories with others and follow me on twitter at https://twitter.com/mjwentink

    And happy Autumn to everyone! :)
  • Jane Pease   Sep 21, 2017 8:06 PM
    Michael, you write well. At 81, I've lived 34 summers with MS. Bring widowed and living alone, much of my time is spent indoors. I have so many limitations, and my share of falls, but am now able to say "no" and rest whenever I need to. Age has its privileges. Fall in Ohio has always been special to me. God bless and keep you, Jane
  • Tamara   Sep 21, 2017 9:20 PM
    Michael, I enjoyed reading your story. I'm 55 and was diagnosed in 1999. Living in Alaska for 15 years was easy, however now that I reside in Golden, Colorado, I have to use my head almost every day throughout the long hot summers. I found a job working in the early (cool) hours and late afternoon-evening hours. As a former running athlete, I know it is really hard to not exercise in the summer, and have found ways around it. 1) I swim 3 times a week at a recreation center 2) I don't exceed 1 1/2 hours on a hike, and I start my route at the break of dawn. I bring ski poles for extra balance. 3) I bike along the paths that hug the rivers, under the shade of cottonwood trees 4) If I feel like taking a nap, and I have the time, I do. I occasionally trip, so I focus on placing one foot down solidly before setting down the other foot. The other morning I had parked at the school in front of a cinder track. I couldn't take my eyes off of it, and I just broke away from my "ropes" and tried to sprint all out. I didn't get too far, as my nerve conductivity wasn't responding, and slowed to a walk. As soon as my feet were "under" me again, on the back stretch, I sprinted again! The cool air really does wonders for us with MS! Stay alert and enjoy every day!
  • Donna   Sep 21, 2017 9:59 PM
    I so loved your blog and the word's you used , prison for summer and warden for MS. That is it , summer is horrible I take at least four showers a day just to get my body temperature down and my muscles knot up and the pain of that brings tears to my eyes. Then you have people look at you and have no understanding of what you feel . Sometimes I wish there was some visible abnormality so others would be like oh I can see how that would hurt or how that would be exhausting. Frustration builds and I get angry at my MS. I so appreciate everything thing that you have said and the wonderful way you have written it.
    Some times I wish I had a T-shirt that says
    I HAVE MS
    I Can't Take The Heat
    I Stumble and often Fall
    I Forget and Can't Process what you say alot of The Time.
    I Love The cold I am at My best at 60 degrees.

    I think the T-shirt would be less exhausting than telling people all the time.
    Thank you again for the blog and by the way Shawshank Redemption is one of my favorite movies
    Have a wonderful winter.
  • Elizabeth Hazelmyer   Sep 21, 2017 10:49 PM
    Summer has always been my favourite season. Going to the beach and playing in the surf. Walking through a coniferous forest. Blooming gardens and fresh vegatables. But this past summer, starting in July, all that changed. Now it was staying inside with a cooling neckwrap on in airconditioning. What has become of me? I was always "summer or bust".
    I guess, perhaps, it is time to enjoy russet leaves and pumpkins. Maybe winter won't seem do dreadful anymore.
  • Anne   Sep 22, 2017 3:34 AM
    Well there are benefits to living in Scotland with MS. We rarely get extremes of heat. People can never understand why I don't have any desire to head to hotter climes for the holidays.
    1- I have MS and the heat affects it
    2 - I am fair skinned and ginger so I end up looking like a cooked lobster.
    3- There are so many opportunities out there that don't need a temp over 75F
    4- I am Scottish, we don't do heat!
    I do love the sun and the lazy spring days, Autumn and the leaf shuffling, winter and snowball fights. There is much to be grateful for
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  • Don   Sep 22, 2017 5:40 AM
    My wife was told she had MS a few years ago and I wish that I could say that all those stories did not relate to our situation but they do. She is not found of the cold or the very hot. We currently live in S.A TX and it is hot her most of the year. We just moved from N.C and are having a veey hard time getting insurance here in TX. My job insurance only pays for part of the Copaxel meds she was taking and it is very expensive. She is on perm disability and do to this disease it caused issues with her former employer. (Thats a story in itself). But I agree! She hurts in the heat and is stiff in the Cold. Our main problem is getting a new Nuerologist and getting a med that is suppose to help with this disease along with all the possible side effect. Good luck to all.
  • Lorrie Norris   Sep 22, 2017 8:23 AM
    I can hardly wait for the first cold, crisp day. I agree with your last paragraph! I feel like Andy after escaping Shawshank! I love the cold and how I feel so much better. I have PPMS, so I have never had a relapse, just a constant downward slide, but the cold is wonderful! Now if it will just show up soon :-)!
  • Pam   Sep 22, 2017 8:35 AM
    My husband's job changed and we moved to Florida. I understand your frustration with summer; I live in the land of nearly endless summer. I so look forward to January when I travel back to the Cincinnati area and temps here in FL may drop into the 40s. I wish you luck.
  • Cindy Dicken   Sep 22, 2017 8:54 AM
    You described my life! I have had MS for 30 years and have been sensitive to heat and any kind of stress. However, the recent past has been the worst as I have entered the secondary progressive stage. Even walking to the mailbox on a hot day can wipe me out for hours. Spending most of my life swimming, water skiing and enjoying summer outdoors has become problematic so I spend most days on the inside looking out. On the more positive side, I have a wonderful supportive husband, great friends. I am upright and on this side of thr green grass. Many people are in far worse shape.
  • sharon contrelli   Sep 22, 2017 9:10 AM
    You put it into words better than I could have. Why has A beautiful Sunny day become my enemy? I live in Florida and can't leave because my son has A College Scholarship. The medicine I take Aderall 2x a day helps A lot. But I always look like I just came out of A pool. Sweaty and wet! My hair never dries when I come out of the shower and, try putting make up on while your sweating! May seem like petty problems to some. But It's not nice being known as the smelly Vampire that can only go out when the sun goes down.
  • Sharon Soluri   Sep 22, 2017 9:50 AM
    I choose to use my maiden name. There was no better way so say what I am living with. I'm from NY but now live in Florida. I am Blessed with A Son who received a College Scholarship, but now I must stay in Sunny Florida until he finishes his Education. The people I know who have MS don't have the same heat problems that I do. Drying off after a shower, is pointless unless the AC is on 72. Which does wonders for my Electric Bill. By time I get in my car {which is right in front of my door} my hair is dripping wet again. Try putting make-upon when your face is sweating. Forget the beautiful beaches here! I never get to see them. I have no outside symptoms now, so I'm just the "tired sweaty one" I like what Donna said I wish I could wear a tea shirt that says "I have MS" Adderall. helps A lot with my tiredness. But I sometimes look like I'm speeding. These might sound like petty problems to someone who has bigger ones but I have those too. I do not go to MS meetings because they look at me like I have nothing wrong because I'm walking fine now. Anyone relate? Thank You Michael for your wonderful insight. God Bless You and your family.
  • Sharon Soluri   Sep 22, 2017 10:07 AM
    Boy can I relate. I'm from NY but now live in Florida. I was blessed with a son who received a College Scholarship. So now I must stay in Florida until he receives his PHD. I can not dry off after a shower unless my AC is on 72, which does wonders for my Electric Bill. Try putting on make-up while your face is sweating. and by time I get to my car in front of my door I am sweating and my hair is dripping. I can never enjoy the beautiful Beaches here. I am tired of being known as the sweaty smelly one. I don't go to MS meetings because I'm walking. My family has forgotten I have MS because they are not educated on all the other side effects like my fatigue which was major. I now take Adderall for that so I look like I'm speeding all the time. But it works great! I heard they are trying to get is approved for MS treatment. My liver is shot because I've taken Copaxone for around 37 years. Great article Michael. Thank You very much!!!!!
  • Carrie   Sep 22, 2017 10:53 AM
    Summer, oh summer how I love to hate you! I live at the top of Minnesota where summers are not terribly hot to most people, but to me they get hot enough to make me a prisoner of my airconditioned house. I work at a high school and have summers off. You would think that would allow for me to have more freedom to be outside, but no! When I say to people that I don't do heat, what I get in return is, "oh I don't like heat either"! They just don't understand it is not a matter of dislike, it is a matter of dysfunction. I used to love the heat of summer, not anymore! Now don't get me wrong, 40 below is not my idea of a good time, but I do feel better at that temperature than 80 above. Living with MS offers up some big challenges, but I will keep my chin up and my feet moving as long as possible!
  • Adrian Hale   Sep 22, 2017 12:21 PM
    Michael Wentink,

    Thank you. Reading this made my day! I am brand new to MS. I was officially diagnosed, this March. I am 22 years old and frankly, I'm feeling lost. I have yet to meet anyone personally that is going through the same thing. However, I know there are many other individuals who are. So, I'm left to reading blogs on my downtime between college classes and work. I'm a firm believer in things happen for a reason and reading your blog definitely was meant for me to read today. I got up per usual to go to work. Finished with my first client and headed to my next. As I headed to my next client, I began to get dizzy and lose my vision.. again. Indiana right now is a little over 90-degree weather and extremely humid. I had no idea what was going on and freaked out. During my last relapse, I lost my vision as well as some other functions and I thought it was happening again so soon. Needless to say, I got sent home from my job and the depression kicked in. I used to love being out in the hot weather. Playing softball from grade school to high school. Now, it's such a struggle being out and I intentionally avoid it. My friends what to go out all the time hiking and doing other things I used to love. I want to with everything in me, but I know my body will not like it. I'm so frustrated. After reading your blog, I had such a sigh of relief. I'm ready for autumn and the cooler weather. Maybe I can go out and do fun things with my friends again. Thank you for putting some positivity back in my life. Especially today!

    - Adrian Hale
  • virginia   Sep 22, 2017 5:20 PM
    Michael described all the feelings I have about heat and hot weather!
    I want to thank him dearly for being so expressive about what some of us can't even say.

    I would like to add one important thing about hot weather and/or the awful effects it has on those of us with MS.

    Menopause!

    I can't cool off internally even when it is relatively cooler weather when I have a Hot Flash! Lol, Lol, Lol
  • Marian Bridgeford   Sep 22, 2017 9:12 PM
    When it's summer, I always tell people I'm on house arrest! For years it because of chronic asthma but with MS I have even more restrictions.
  • Cynthia Lewis   Sep 23, 2017 9:02 AM
    I know exactly how you feel and what your talking about!! I have felt that way for years! I was diagnosed with MS at the age 33 (I'm now 48) I had not taken any medication for it or supplements up until about 5-6 years ago. The good Lord has blessed me and taken care of me.
    I'm not in a support group or help other than receiving these newsletters.
    I needed to read that and know that I wasn't alone in the way I felt . Thank you for sharing your thoughts.
  • Carol   Sep 23, 2017 9:53 AM
    Dear Michael,
    You are lucky you are at least not a woman with MS going through Metapause in the Summer! Now that is the worst. You actually feel like your a snake and want to crawl out of your skin. There isn't an air conditioning system that can cool you or any comfortable clothes to wear.

    Your whole body is entire inferno! There is no way to cool yourself. I would not go any place without my portable fans, ice, and ice water. I often felt isolated. Thanks for the article, good to know I am not alone.
  • Lorraine Czajkowski   Sep 23, 2017 11:45 AM
    Your blog inspired me, to realize that I am not alone with my battle during the summer. I so want to do things, but some days I am unable. I used my cane yesterday to retrieve the empty trash bins. I didn't takr my walker-what a mistake. I struggled so much, and of course I didn't have my keys to open car and get the walker. Both neighbors weren't home to help me. So I put myself roughly on the ground and called 911 for help getting up. My pride gets the best of me always. I've had MS for 40 years, but it has only progressed in the last 5 years. I hate it. So best ofr luck to you in your adventures
  • Carolyn Stevenson   Sep 24, 2017 1:17 PM
    Hello again Michael,

    Well you inspired a lot of us to come out of our shell and share how MS has impacted all of us who have it. I feel this was a safe place to write about it. I guess a few others did too.

    Thanks to all of you who have shared your stories. I went back on to this site and read what everyone had to say and even re-read most of them several times.

    NJ is still experiencing very hot summer like temperatures when I'm use to wearing hoodies by now. We just purchased a three wheel bicycle and I can't wait to start riding it in the evenings when it is cooler.

    God Bless everyone No matter what religion you are!
  • Christine Roberts   Sep 24, 2017 4:10 PM
    I have been reading about some of the blogs you all have posted on here about MS, I am still waiting for my results but I To can relate to a lot of what y'all are talking about especially being tired, I get up and do stuff for just a few hours and then I am so drained that I fall asleep for an hour or more and if I get out in the sun or in the heat I start itching, do any of y'all have that problem also? I have fans on me all the time cause I am always hot. They found a spot on my brain, I fall all the time and I am in constant pain. I also have severe back problems now and am loosing my eye sight and they say I have Fibromyalgia and some other things wrong but for the sweats I take black cohosh twice a day and u can buy it at the dollar general store it helps me and maybe it might help one of u ladies.
  • Trinette Nichols   Sep 25, 2017 6:19 PM
    Wishing you and your family many blessings with this heart wrenching disease.I recently been diagnosed approximately two weeks ago and I cried everyday since. I am a strong driven individual and the thought of being limited in my activities is just not me. I'm praying daily to learn how to adjust and fit the "misfit" MS into my life... some days I give in to MS and other days I push harder... it's a long journey but I have to stay positive because the depression of this disease can be quite overwhelming... stay strong,encourage yourself and keep praying... GOD bless
  • Susan   Sep 26, 2017 10:48 AM
    I too rejoice in the cooler days and cold nights ! Stay a Warrior my friend
  • Denise   Sep 26, 2017 1:01 PM
    I was diagnosed with RRMS in 2005, just as my twins had graduated from high school. I was a R.N. working a normal week. Suddenly "normal" changed. A friend encouraged me to apply for SSDI. My response was "why I'm not disabled". Then I started loosing my job, one of which was at my own neurologist 's office. I found staying with that neurologist either as a patient or as a R.N. for his partner a conflict of interest. I took a job answering phones at the friend's office that encouraged me to apply for SSDI. We had an agreement that I could do my CEUs at work while answering phones and emailing messages to the engineers in the office. I taught myself how to do electronic medical records. While working with a social worker I applied for a position with a local physician, doing his electronic medical records. I had that job for three years. Who said "you can't teach an old dog new tricks"??
  • Jillian Truair   Sep 26, 2017 3:13 PM
    OMG!!!!!
    I broke into TEARS reading your description of your struggle with the "heat"! I thought you were plucking the words out of my mind!
    I'm in the SAME prison that you are, Michael!!!
    May God bless you and keep you in His loving arms and Gracious Continence ALWAYS!!! 😋💞💕
  • Marie Winkler   Sep 26, 2017 9:19 PM
    My daufgter has MS,and pretty much fight with the heat,and she is happy to see fall coming,and now I think I understand watch she feel,and how the heat bother her
  • Jennifer   Sep 26, 2017 11:00 PM
    All this is 100% completely accurate what summer is like with MS. Thank you for articulating it so well.
  • Abby   Oct 2, 2017 4:47 PM
    I could have written this. Fall came to Philly this week and I wanted to cry tears of joy! A a northern girl, I have always loved this time of year- but now I rejoice in it. It is wonderful not to feel alone as I read this! Thank you!!
  • Kimberlee Leach   Oct 9, 2017 8:15 PM
    Michael, all I can say is AMEN. I live in Redding California. I call it the armpit of hell. I pack myself with ice packs, use my cooling vest ect. So when autumn comes, I break out of that prison an make the best of each day. My moto is “what doesn’t kills us makes us stronger” so everyone with with MS enjoy the cool weather an have some fun jumping in a pile of leaves (or in my case I just fall in them) lol
  • Kristian   Oct 14, 2017 10:29 PM
    I was recently told my MRI scans showed impressions of MS. I have over 10 brain lesions scattered a over. I have so many tests and spinal tap done to rule out diseases that mimic MS and yes those were ruled out. My neurologist said to him it looks like MS but I don't have those major symptoms of MS, however, I do have severe fatigue, insomnia, muscle cramps, and pain. He also wants me to see a MS specialist in Ann Arbor Michigan to confirm and start treatment. Guess what I'm saying is I'm confused and would like to know if anyone could relate? Thank you, Kristian