When MS Changes the Marital Equation

For decades, we have considered ourselves partners.
 
We divvied up decision making and household chores the best we could. After our three children were born—including a set of twins—we took pride in our co-parenting efforts. Although the 50-50 quality of our 26-year-old marriage was tested when the kids were young and I opted to teach college part-time and work as a writer from a home office, we continued to earnestly pursue the goal of domestic equity.

 
It hasn’t always been easy, particularly when Scott’s work hours have kept him out late beyond dinner time. Because I often work from home and am in close proximity to the kitchen (that’s when I’m not teaching at a university), I have tended to be the one who makes family meals. On those evenings, when Scott came home, he’d automatically do the dishes and, on the weekends, would prepare meals, as well as take care of a host of other household concerns.
 
Then MS happened.
 
Then the fatigue hit.
 
Followed by leg spasms which started to interrupt my slumber (and his, by extension).
 
Then heat sensitivity—which negatively affects me through late spring through early fall whenever I attempt to venture outside, rendering me stuck inside air-conditioned areas— descended like an impenetrable fog.
 
Thus, the 50-50 bargain, the marriage of equity we created years ago, involuntarily slipped away. And man, was I ticked. In truth, I still am.
 
The fatigue that has not only carved deep, dark circles beneath my eyes since I started experiencing MS symptoms five years ago, has also carved large swaths of time from my days, cut them out of my life like an unrepentant thief. When fatigue absconds with my energy, I grieve for how I could have productively used these stolen hours, like working on my writing, grading my students’ papers, seeing friends, reading, or walking my two dogs.
 
Ever since MS came to town, on far too many evenings, Scott comes home to find me splayed out on a sofa or on our bed, thoroughly drained. When I see him—after he has battled Boston’s notoriously terrible rush-hour traffic—I automatically start apologizing for the fact that I ran smack-dab into the wall of fatigue. And the fatigue won.
 
On far too many days when I do only a couple of things—like go to a yoga class, stop by the grocery store, or run other errands—I find myself needing to rest afterward. In these instances of post-activity malaise, I cannot make meals, I cannot do chores, I cannot help in any meaningful way. If the fatigue happens to be accompanied by the thought-crushing headaches and that intense eyeball ache which makes it impossible for me to read—which, to me, is akin to depriving me of oxygen—I wind up brooding about how useless I feel as I lie motionless, waiting for my energy to regenerate.
 
Intellectually, I realize this situation is simply a byproduct of my chronic illness, not a character flaw. However, I cannot seem to shake my guilt… my shame. I become impatient waiting for each bout of fatigue to abate.
 
I’ve yet to come to terms with all of this, with having to sit on the sofa while Scott does the dishes or collects the recycling or feeds our dogs, Max and Tedy as they enthusiastically dance around his feet. I’m watching my once relatively equitable marriage become unequal. MS, the unwanted interloper, is pressing its thumb on the scale. I cannot remove the weight of that thumb, but I know I must make peace with its presence.
 
From all this angst, a new marriage will evolve, one that will no longer focus on equations and equity, but will celebrate other qualities, ones that can’t be quantified by the number of chores one does in a day. I’m just not there yet.
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Meredith

Meredith O’Brien

Meredith O’Brien is a Boston area writer and journalism lecturer. She is a die-hard Red Sox fan who lives with her husband, three kids ,and two noisy dogs. Her fourth book, "Uncomfortably Numb: A Memoir," about her MS experience, will be published in March 2020. Follow her on Twitter @MeredithOBrien, or visit her website at mereditheobrien.com.  

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    abbeylynne  Jun 5, 2019 5:10 AM
    Thank you for sharing that. I’m still in the feeling guilty stage, about things like walking the dogs, hiring a housekeeper, not always being able to do the dishes. My husband will walk the dogs, but does not help with meals or dishes. I have trouble resenting his lack of understanding and boy do I hate that mountain of dishes in the morning!
  • Kim   Jun 6, 2019 10:19 AM
    Thank you for sharing. I do suffer from fatigue, and my husband doesn't understand. I have always been a "go" person. A full-time job, 2 teenagers, 5 horses and a dog. With the full-time job I help out a horse rescue and give riding lessons just to pay for my expensive hobby. Around 8 every evening, I am done! I sit in my recliner and fallout, sometimes in the middle of talking. There has to be something that can fight the fatigue. My neurologist put me on Modenafil which helps me so I don't fall asleep at work anymore, but it's not keeping me up later in the evening. Thanks for listening!
  • Mark   Jun 6, 2019 10:25 AM
    Thanks for sharing your struggles. Having started with PPMS showing some signs on me nineteen years back, my life struggles are similar but with the genders reversed. Scott sounds very supportive but the MS person always feels some guilt for impacting the spouse's sleep, chores, etc. Stay focused on all the positives your life still has even with the MS, which appear to be many. Very nice blog... Thanks for sharing.
  • Janet Solis   Jun 6, 2019 10:31 AM
    Meredith, you are a talented writer. Sharing your real life experience and feelings about MS is powerful. Especially to those of us who are in your shoes. My 29 year marriage is really starting to feel the strain of my lack of energy. I am in constant indecision mode about what exactly to "give up" from my life. I already gave up photography, one of my passions, because of the fatigue and vision issues. Now I wonder what is next.. I want to do things that bring me joy. JOY is my word of the year this year. But the things that once brought so much joy are now bringing frustration and stress just to make them happen. Well that seems counter productive!Now I am trying to redefine what joy means to me and navigate a whole new path with MS in the mix... instead of just trying to ignore and barrel through it with my old normal. I'm still getting there, it's a work in progress. Your words have reaffirmed my new approach. Thank-you
  • laurie   Jun 6, 2019 10:35 AM
    Thank you for sharing your honest thoughts. My hope for you is that you and your husband will have healthy communication in all this. I pray that both of you would "give 100%" to your marriage and your household, even if your 100% doesn't look like his 100%. It's not equitable in a sense, but when you give your all, I hope he understands and is compassionate toward you, because you are the one he promised to cherish all of his life. While most of my MS symptoms are related to leg stiffness and numbness, I do know fatigue well too. I can no longer run around with my little kids and my husband has taken on the physical stuff - riding bikes with them, kicking the soccer ball and the big play time things. That has become his "100%" with parenting but "my 100%" is snuggles, reading books, and the quieter crafty times with them. I hope and pray that you don't feel too much guilt and find that balance with fighting for what you want and being at peace with this hand we've been dealt.
  • Rosalie Rogers   Jun 6, 2019 10:38 AM
    I am the Mother of an MS patient, Debra Rogers Bright. I feel like I spend time
    worrying about Debra when I should not. She is handling the MS in high spirit and
    tests a lot of drugs for John Hopkins here in Baltimore. She believes she will help
    find a cure. I am very proud of her.

    Thank you for all you do for MS.
    Rosalie Rogers
  • Max   Jun 6, 2019 10:40 AM
    I'm so sorry to hear of your difficulties while at the sometime glad to know that someone understands what I'm going through. After 55 years of hyper activity, hiking, climbing white water canoeing, house building, dancing, partying I was hit with R&R MS. Like you I find it hard on my relationship to try and explain why I don't get things done. To make matters worse, after a lifetime of self employment I have no pension and very little savings so am forced to work until I fall off the perch. No early retirement. I often have to fight away dark thoughts.
  • Janice   Jun 6, 2019 10:40 AM
    Wow ! I work full time ,after work picked up my son and dinner or (prepared it )feed my kid , walk the dog feed the dog n suddenly without a second more to stand forced to plop down on the couch and abruptly running out of energy thus leaving the pots and pans kitchen an utter mess! so I can so relate when coincidently my husband would walk in from work at that very moment and say “You’re always on that couch,!!!” How very frustrating and annoying but yet feeling guilty too for not finishing the task
  • Mr. Estrada   Jun 6, 2019 10:42 AM
    As a husband of an MS patient, I can assure you it's a transition that can be overcome. It takes a lot of communication, when I say a lot.. it means don't assume as a husband or don't assume as a wife. It takes a lot of effort/courage to talk about how things are different and find that sweet spot to re-invent yourself as MS patient and as Partner.

    On my end, I've noticed that my daily life has changed to be longer days and long nights after work. As a husband I take on what needs to be done at the house, I mean anything.. and keep your poker face.

    Be mindful that Fatigue can make you say and or do things that might make your MS partner feel worst and or your love ones trying to help. Its love for that person next to you that will move you, and once you think you got somewhat a tempo/ Rhythm .. it will change..

    MS is very fluid.. Therefore, It takes both of you to change, adapt, overcome, communicate to once again look for that sweet spot.

    Take time to enjoy each other since work overload will be your worst enemy.

    I think the MS condition does bring challenges, but the biggest challenge will be the attitude on how both of you engage the chapters of Live ahead of you.

    I try not to overthink, I just do what I need to do and enjoy as much as I can my wife..

    Gob Bless you and your Family.
  • Sue   Jun 6, 2019 10:44 AM
    Hi Meridith--what a valuable blog post! I am doing to look at your website. We have a lot in common and I loved your writing style and related far too well to what you described.
  • Patrice vogt   Jun 6, 2019 10:50 AM
    Since I was diagnosed with ms in 2012, my life and my marriage has changed dramatically. My fatigue has stopped me from working and I had to leave my full time job in 2013. I struggle between my brain telling to do things and body stopping me. The heat sensitively cripples me. And I struggle with my used to be life and this new one everyday. My husband while he is understanding mourns the old me. When After dinner I just want to sit on the couch in the air-conditioning and veg until bedtime. I can feel his disappointment However, I am grateful to have a supportive family. I am also grateful to have good insurance and to be able to take care of myself on a daily basis since my children are grown and have health homes of their own I think about if I had been diagnosed when my children were younger, how difficult my life really would have been So I am grateful but there are times when I feel sorry for myself I am also hopeful that someday there will be a cure.
  • Dee   Jun 6, 2019 10:52 AM
    As much as I hate for someone else to have this disease it's also comforting for someone to truly know what you are going through. My husband is very supportive, but, even he, doesn't truly understand, everything, all of the time, that I'm going through; how could he? The fatigue drives me crazy! I had always been the one who worked as a nurse all day, worked in the yard, played with the kids, and cooked for...everyone! The sun makes my eyes hurt and I end up with a migraine. The heat drains me of any energy I might have had. Walking or using my hands causes harsh spasms and drawing inward of my limbs. I, too, love reading, but I can't read when this happens. Besides making my head hurt worse, I'm unable to concentrate or take in anything I read! I feel horribly guilty that I can't help out around the house as much as I once did. I'm so tired of being tired!
  • Jennifer Rufolo   Jun 6, 2019 10:54 AM
    Thank you for the article! I can completely relate. I am a stay-at-home mom. I am embarrassed and hate the fact that my working husband has to help me clean the house due to my fatigue. I have even apologized to my 10 year old twin boys for not being the mom I used to be. It’s nice to know someone else truly understands me.
  • Judy Van Tieghem   Jun 6, 2019 11:02 AM
    I have had MS for nearly four decades. I had been married and still am, to a wonderful man for only six years when I was suddenly paralyzed on my right side. After days in the hospital I was diagnosed and told I would never walk again. I don't do groups as I always feel worse after seeing what toll this terrible disease is taking on others. My only child, who just turned 30 has MS as well. My husband continues to shoulder the burden when he can. I also write, have published 3 books and work as a freelance reporter for the local paper. It's a lot but I live with constant pain, I don't sleep like normal people, I cannot dis connect and it is causing major relationship problems because I change thoughts in mid sentence. I just continue on.
  • Amy Andrus   Jun 6, 2019 11:13 AM
    Oh how I can relate!! Not to the partner part but raising kids as a single parent and my marriage now. The fatigue takes away alot of my hours.....I have hated it but can enjoy the rest sometimes. Thank you so much for putting words to "IT"
  • Ken bruno   Jun 6, 2019 11:20 AM
    Having once manageable MS fatigue became unmanageable after having a pituitary failure that resulted in having to go on cortisol replacement. My internist put me on 20mg adderal once daily, with a 10mg supplement if needed to help treat the fatigue. I went from being totally wiped out at 10 A.M. to having completely normal energy levels through out the day and night! A complete energy recovery. Adderal may or may not be suitable for others, but it might be worth exploring with your doctor.
  • Dave D   Jun 6, 2019 11:26 AM
    Meredith,

    Plz find a Boston Neuro familiar with Low Dose Naltrexone. That can be a real "game changer". A brilliant article you wrote. Plz keep us posted. Best, Dave
  • Private   Jun 6, 2019 11:27 AM
    Fatigue, trouble walking straight and other issues. Primary care physician says you are just depressed and need to exercise more. Two years later finally get sent to a neurologist who says you had optic neuritis 15 years ago that should have been a sign you might have M.S. my wife says my diagnosis scares her and makes her want to run. I spend years chasing after her affection only to see her push me away and divorce me. When I hear stories of faithful spouses who stick with their marriage I think wow, how lucky you are. Be thankful for your significant other and tell them every day how much they mean to you.
  • Randy Voss   Jun 6, 2019 11:29 AM
    Meredith.... I'm reading this blog now while enduring my own bout of morning fatigue after a night of cramps and spasms. Find myself nodding my head at each of your frustrations and angst.

    Since I was was diagnosed on 9/16/17 I have watched the thief MS take pieces of me on an ongoing basis. At every turn I too feel that thumb, not on some invisible scale, but right down deep into my chest. As hard as I try to push forward, this MS pushes me back in almost a taunting way. I continue to work and maintain my extensive travel schedule, try to rebuild my tattered golf game, and maintain a social calendar for my family. Not gonna lie, each has it's challenges, as you have chronicled.

    Through all of this, my wife has remained the beacon of positivity in my (our) life. She buoys my spirit when required, encourages me daily, and has learned to back off when the fog hits. Together we're learning what each day will allow for and calibrating accordingly. Never, ever, easy. And it sucks.

    I hope today is a good day for you, and that the thief leaves you be for a while. Onward.
  • Evelyn   Jun 6, 2019 11:37 AM
    Boy, do I relate. Diagnosed 19 years ago, at 45, i was putting myself through college, having raised 5 children and divorced. Hello, this was supposed to be my time to grow. Wham. It was probably the hardest part of the MS at first. I could not walk to my classes or carry my books! Now, at 67, it still gets to me sometimes, but i won't let it stop me. I have learned to do and stop, and do and stop. My motto is," I am not done dancing yet." And for the first time in my life , there is a wonderful man in my life who gets it.. and loves me. A new journey in late life! ...with MS! Miracles do happen. Bless you all!
  • Gregg Grider   Jun 6, 2019 11:40 AM
    I’ve been struggling with MS for 27 years, had a brief relief from the fatigue when Effedra was legal. The FDA lied when they stated Effedra had no medical use. For me, Effedra was like a “Wonder Drug”! After taking the recommended dose for only three days, I found the motivation and energy to reroof my house during the cool morning hours. But, Effedra is very effective. After unintentionally taking a double dose before work, I was surprised to notice my heartbeat at 120 beats per minute hours later!

    But if better training on the potential dangers of overdosage were emphasized by Prescribing Doctors, I believe Effedra could be safely used to relieve MS related fatigue.

    The FDA has wrongfully declared Effedra as an illegal drug, putting it in a class with Heroin, Opium and Meth.

    If enough MS sufferers reached out to the FDA concerning Effedra, hopefully it could be legalized for Medicinal use in treating MS related fatigue and depression!
  • Patti Marzano   Jun 6, 2019 12:16 PM
    Thank you for sharing this. I am newly diagnosed with MS and I am 60 years old. I have been told I have probably had this since I was in my 20's but just now am showing flare ups. But is does explain the years of complaining about how tired I was or how clumsy I was. I feel totally worthless lately. I work full time but can't do much more after a full day of work. I hope that one day I can come to terms with this.
  • Jeff Holshevnikoff   Jun 6, 2019 12:16 PM
    Thank you for sharing your experience. I am a caregiver to my wife, who was diagnosed with MS about 2 years ago. Ever since she woke up one day and told me that she could not see out of her right eye (this is when we discovered that she has MS), I have been the driving force behind finding out as much as possible about MS, her medical treatment, and other health/life decisions.

    I feel that I get it as much as a caregiver could get it, not having MS myself. I have educated myself as much as possible. I am at every doctor's appointment, MRI, Ocrevus infusion, etc. MS fatigue has been coming on stronger lately, so I get that my wife doesn't have the energy that she had before. I do not have a hard time with this, and I do as much as possible to pick up the slack. To be honest, the hardest thing for me is coping with my wife's cognitive decline. I try to be patient, but this part of the disease is probably the only thing that is challenging me with my patience. will also strive to get better in this area.

    I write this not to pat myself on the back, but to offer to you all that have boyfriends, spouses, friends or family that you are close to, suggestions on helping them understand what you are going through.

    Of course, Googling MS will come up with a ton of valuable information. It is usually technical and general in nature but. This is good background information. Attending doctor's appointments with you is also very helpful and informative, especially if you encourage them to ask questions. I always have a list of questions when I go there.

    However, the single most helpful source of information for me as a caregiver has been to join MS groups on Facebook. I am on groups with thousands of people with MS who discuss all their symptoms, meds, vitamins, diets, etc. I am in: https://www.facebook.com/groups/202971306407870/?ref=group_header and in this group specific to people on the same DMT as hers: https://www.facebook.com/groups/860023917470405/?ref=group_header

    If you can encourage your spouse, boyfriend, girlfriend, kids, or whoever to join these groups and read through the posts, post questions, etc., I believe that it will help both of you. This has worked well for both me and my wife. I see what you all suffer through and am compassionate about it. I get it and it drives me to support my wife to the best of my ability. My wife is not part of these groups because she doesn't want to read all the negative stuff. I am the filter and share with her the information that I feel will help her most.

    I hope that this is helpful to some of you. A caregiver who doesn't understand is probably not well educated about MS. Get them education!

    Best to you all!
  • Ben   Jun 6, 2019 12:17 PM
    Thanks for sharing your story, Meredith. My wife suffers from MS, 11 years, so I empathize with you and your family. We have two kids, 14 and 4. I try to work with her at doing less so she doesn't hit that wall, but it's often hard to avoid (esp. with kids). She dreads the summer because it means dealing with the heat and trying to manage our kids at home. Just know you're not alone, and we fight the good fight together, where ever we live, each day. Hopefully it helps focus efforts on the most important things.
  • Gail A   Jun 6, 2019 12:41 PM
    Thank you for your input. I have RRMS & huge fatigue. My relationship with my husband has suffered greatly the last 7 years since diagnosis. I can’t handle stress, heat, cold, etc. I sleep 3 hours every afternoon. I don’t cook any more as I drop things and get too tired. I have serious lassitude. My husband just doesn’t get “it”. His health is getting poor and I have fear he won’t live too much longer. I work hard to maintain while he won’t address or follow up on his serious health issues. Frustration to the max! My saving graces are: yoga, meditation, online groups, local support group and our local MS Achievement Center. My few close friends have left me out of their circle, they can’t handle/understand MS either. How to stay positive? I love watching the birds and flowers in my yard. I read and research a lot. Not on any Dmds as I tried 4 of them with horrible side effects. Now going natural and keeping my doggie close. Blessings to all you MS Warriors out there. This disease is complicated!
  • Alice Hart   Jun 6, 2019 12:45 PM
    I have had MS for 26 years that I know of. Since I am 75 , I have other age-related illnesses. I am taking meds with sweating and fatigue as side effects. So I am often tired and HOT.
  • Barbara Anderson-See   Jun 6, 2019 1:07 PM
    Enjoyed reading your blog. I have had MS since 1977 and I battle the fatigue as do you. It seems debilitating and I go through bouts of guilt because I just CANNOT complete tasks that I begin. It is so frustrating. Thanks for sharing your thoughts.
  • susan plath   Jun 6, 2019 1:08 PM
    my son has had ms for the last couple of years and it breaks my heart. his pain is bad most days and leg muscles don't want to work. He's is beyond tired most of the time. Part of this is he has kidney disease on top of it, so he has a double whammy. I want to try to find ways for him to get some energy and life back into him, but I'm not sure what to do It's hard when it's your kid and you can't help him.
  • Jerry Stevens   Jun 6, 2019 1:57 PM
    I do undersktand however the situation is reversed here. I've had MS since 1979; however, if you don't understand, iit wont bother you---wrong!!! Wont go into the details (too much!!!) My current wife of 20+ years had a career as a graphics artist and working now as a fine artist. after having a career in the USAF, PPMS has reared its nasty head! I can do so little - balance, fatigue plus that I wonder sometimes why I still live. I can do the pet feeding, load/unload the dishwasher and still drive but I see her doing all the things I once did--move the entire household, mow the yard, move furniture, handle the checkbook(she hates) which make me feel totally inadequate; useless! Wish the MS folks could find a cure - don't just treat the symptoms. Sorry fatigue and spasticity make it impossible to continue!
  • Patricia Graham   Jun 6, 2019 2:07 PM
    Meredith, thanks for your article. Most of your physical symptoms are oh so familiar to me. Medication can help with the fatigue. I have successfully used provigil (aka modafinil) for years. There are probably others that also work. Baclofen plus tylenol/ibuprophen made life bearable with night muscle spasms.

    I envy you for your family and the life that you built.
  • Robin Miller   Jun 6, 2019 2:17 PM
    I just learned about my MS. I'm 66 years old and for a long time I thought it was just old age. My heart goes out to you Meredith. I see that I am fortunate to not have anyone depending on me to participate in their lives. I was always the caretaker and strong one in my family. I am single now and have the luxury of indulging my illness as it dictates. I can't imagine how frustrating this must be for you.
  • Christa Kerns   Jun 6, 2019 2:38 PM
    Fatigue is by far my most debilitating symptom. It is also frustrating in it’s unpredictability and often not apparent to others. I struggle with feeling like “I’m missing out”!
  • Christi   Jun 6, 2019 3:02 PM
    I've been reading several of the responses to your blog and it seems we all can relate to how MS fatigue has changed our lives. As for the spouse of an MS patient, it might be helpful for them to accompany you to your neurologist appointments. That way they can hear from a professional that MS fatigue is real and debilitating, that you're not being lazy or faking it. I know I am fortunate that my husband "gets it" and knows this is not how I want to be but some days have no choice but to take it easy. I have found that stimulant medication has helped me get through the day. I've even started taking an additional dose at noon to help me stay awake during the afternoon slump. Talk to your doctor and see if there's a medication that might help.
  • pbermingham0  Jun 6, 2019 3:07 PM
    I got so much from reading this article and people's comments on it.

    I was diagnosed with MS around 13 years ago, at the age of 50. I am a father of three sons (then aged 8, 6 and a few months old). At the time, I worked in a demanding and pretty responsible job, as did my wife. Six years ago I decided to retire. I guess I could have continued working, which I always loved, but with young children I had a sense that it was not the best thing for me to do, and I was lucky enough that we could manage for me to stop working. I continued gamely with R-R MS, but the decline became more and more noticeable both to me and to others. What is most difficult is the fatigue, the loss of balance (leading to several falls), not being able to participate outdoors, and being overwhelmed by things that I was aways able to take in my stride. About a year ago, my status was changed to secondary progressive. But life goes on. I drive, I shop, I cook, I clean up, I handle all the home admin, I volunteer to teach English to immigrants, I read and study and occasionally I find some time for writing. Sometimes I feel so wiped out. But I know that I have a much better take today on what matters in life...and what does not.

    I know that this is hard and unfair on both my wife and my children. But it is what it is. I fight on. To all of us who are living with this condition, and most of all to our loved ones!
  • Julie Bagu   Jun 6, 2019 3:13 PM
    That was a nice story, as I a single mom of three, a set of 9 year old twins and a stubborn 18 year old boy and received diagnosed with MS on 9/2018.
  • LIsa T.   Jun 6, 2019 3:24 PM
    Thank you for this article. I work full time (outside the home), and live alone. A lot of times when I say, oh I’m just tired. What that reall y means is I am so completely drained almost to the point of being unable to function. I can’t people expect people to understand how I feel. The horrible headaches are equally bad. It helps me to better deal with it just knowing I am not alone.
  • Jean Bazdresch   Jun 6, 2019 3:31 PM
    this story makes me cry because it is so true
  • Debbie Parker   Jun 6, 2019 4:04 PM
    Thank you for being vulnerable enough to share. I too feel guilty that I can’t do as much as I used to. I get tired so easily that it frightens me. My leg spasms keep me from sleep as well, even though I take baclofin and take Botox injections. I’m concerned about the future, of how quickly the disabilities might progress. What have all of you experienced?
  • Gail Butler   Jun 6, 2019 5:33 PM
    This article was MOST timely. My MS has progressed unexpectedly to Secondary Progressive MS, just after my Breast Cancer Surgery & Radiation Therapy. I miss my old self!!
  • Patricia Slouka   Jun 6, 2019 7:17 PM
    I am single never married/partnered up. Boy do I relate to this article! I've been active most of my life despite that MS had raised it's ugly head when I was as a kid, just not diagnosed until I was 56. I've struggled with bouts of fatigue from out of no where, heat intolerance, muscle spasms, etc and was determined to be a hypochondriac by others at an early age. The symptoms would disappear leaving me to wonder what was happening to me. Then, in the early 90's, two episodes of optic neuritis. Then my legs started to 'cut out' on me during periods of intense frustration/excitement/muscle output at work, home and once at O'Hare airport! Also disappearing leaving me and my employers questioning my experiences. Even after going to 5 neurologists, no answers. Finally after the long hall getting my Black Belt in TSD karate, I went back to my PCMd. She got the ball rolling with my 5th and best neurologist. I was dx 3 months later. Now 12 years later, the fatigue has gotten overwhelming with little reprieve. My house is nasty, the laundry and dishes can pile up quickly and still I'll beat myself up. I am grateful for all this input and maybe will start to go easy on my self esteem. Yes I still go to practice but less now. Am retired but volunteer for my former paid employer about 10 hrs a week. As I push myself at least the quality of my life still floats above water. I believe we (and our supporters) are a special group of warriors battling MS. Am grateful for all the help given to us to cope 'with the crap'!! Thanks for letting me share.
  • Mary Anne Molinari   Jun 6, 2019 8:16 PM
    Where you diagnosed with MS and later came the fatigue? If you have MS is fatigue the main symptom? I ask because my daughter has had MS since her 20's, my brother has it as well. My sister was told she has it but the only symptom is once in a while her leg bothers her. I am 70 now but have been very active, then some days I just cannot get out of bed, I am so tired. So far all I have heard is go t be earlier or stake a sleeping pill. I do seem to feel better at night . Also I have restless leg syndrome.
  • Melissa   Jun 7, 2019 4:45 AM
    What a beautufully crafted piece of writing. I'm waiting on more neuro tests so can not say I have MS for sure but I've gone from vigorous daily work outs, mud runs, competitions, weights, cycling and conquering the world to my life force sapped out of me along with recent memories and inner belief. I've lost friends, work and a ful96 months of blank void and constant regret and self loathing. I'm 41 in 2 weeks and find it hard to see where I fit in without my radio/writing work, exercise and buzzing about the north of England.
    My aim now is to be bring awareness to not only MS but blast away the revolting stigma still coating most peoples attitudes. We will all say we understand mental illness, how much it's progressed in terms of education but when push came to shove I've seen how people react from all classes of society. It appauled me but then I ask myself how would I have REALLY reacted in their shoes
    I'd hope very differentmy but it's not a nightmare they have known and it's easier to shut your eyes and ears than educate yourself unless it's your inner circle
  • Jeanne   Jun 7, 2019 5:42 AM
    Hi Meredith, you are a very talented writer. Your article was very eye opening. I have a daughter who suffers with MS and she has mentioned more than once that I do not fully understand what she has to go through from the symptoms of MS. Thank you for sharing your struggles with MS, it has helped me better understand what she is going through.
  • Deborah Rivera   Jun 7, 2019 8:34 AM
    My 28 year old daughter was diagnosed with MS in January of this year. The tiredness is real. She works full time, goes to the gym, makes dinner and that is it for the day. She is in bed by 7:30 at night. It has taken over her life....
  • Stephen Leyva   Jun 7, 2019 9:49 AM
    My wife has MS and shares many of the symptoms you mention in your blog. We’ve always shared the chores, although my work schedule often gets in the way. Like your husband, I try to make up for it when I get home and try to do double duty on my days off. We’re fortunate that I enjoy cooking and am a “clean nut” like she is and don’t mind pushing the vacuum, washing dishes or cleaning bathrooms. However my biggest struggle is learning when to turn all that busy work off and focus on spending quality time with my wife. It’s critically important to know how to prioritize these ever competing needs. I’m learning that time with the wife is number one. The other stuff will get done when it gets done!
  • Mike   Jun 7, 2019 10:55 AM
    Meredith, I understand what you're going through. I'm only one year further along this road of learning what it means to live with MS. I've had to deal with some serious life-changing issues including going from a person with seemingly boundless energy to a person who now receives Social Security disability because I can no longer work full-time. This caused me to seriously examine who I am and what gave me my sense of identity. It also gave me some free time that I did not have in the past, so that I was able to pursue one of my life goals - writing. I don't expect to become a best-seller, although who knows? As of now, one thing that MS has NOT yet revealed is that I'm the next J.R.R. Tolkien or Robert Jordan. :-) One thing MS HAS revealed is that I've been blessed with a wonderful, supportive family (wife, grown children, parents, and siblings). Even though MS has not affected my mobility (yet?), and thus all of my symptoms are in the invisible category, my family has always given me love and encouragement. I am truly blessed!!
  • Gabriel   Jun 7, 2019 11:37 AM
    Been there. Done that. LOL You expressed it so well. I'm married, and I face the fatigue, and a few other things. For me, it's a bit rough. But for my wife, nothing seems too much. She thinks of me a lot.
  • Karen Cress   Jun 7, 2019 12:12 PM
    Thank you for sharing Your thoughts of MS and fatigue. It's a terrible thing, but comforting to know others are with me experiencing the same feelings. I have been married coming up on 37 years and your story is exactly on target. Although my husband and family are loving and supportive I am not sure I will ever "mentally accept" my loss of function, I just remember to trust in the Lord and feel very blessed with my family. Remember to stay strong and keep fighting. I was diagnosed in 1993 and told back then I would not be walking w/in 5 years. It is now 2019 and although with difficulty, I am still walking. Keep Fighting.
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    davidb1255  Jun 7, 2019 12:27 PM
    Great post Meredith!! I have been diagnosed with SPMS since Feb 2003. I finally retired at the end of 2018. I have been single for 12 of the last 16 years which was fine. It gave me a chance to come to grips with the beast. I do have a wonderful supportive daughter, family and church family.

    I have recently been blessed to reconnect with a very special lady and she understands what I go through on a daily basis.

    I don't take anything for the fatigue but I do try to ride my recumbent bike as often as I can.

    Thank you
  • Barbie Sirico   Jun 7, 2019 1:06 PM
    Hi Meredith,
    Boy, do I feel your pain. Like you, I was diagnosed just a little over 5 years ago. The fatigue hit me like a ton of bricks at the end of 2016. I suffered with it because I thought I had to. It was taking me between 4 and 5 hours to scrub the 2 bathrooms in my home because I had to keep stopping. I couldn't function. It was truly debilitating. It was horrible. Then in August 2018, ( after breaking many bones & teeth from falling because i couldnt focus) my neurologist prescribed Modafinil for me. It is listed as a stimulant. I get 200mg pills that I break in half , and take once every day at 6:30 am. It has given me part of my life back. I can function!. Maybe you can speak with your neurologist about this. It has helped me so much. I hope this helps!

    Take care,
    Barbie
  • Pat   Jun 7, 2019 1:40 PM
    You described the fatigue and resulting feeling of guilt so well. My husband and I were happily married for 50years before he died last December, but the last five years were a bit of a disaster as I began to fall apart due to ppms symptoms. That darn fatigue is the worst and it both me and my husband a very, very long time to be able to cope. I was always so active and busy. Cooked up a storm, entertained, socialized, and then, like Alice, fell down a deep rabbit hole and never again surfaced as that person. Now I live on yogurt and frozen power bowls. A great day is when I can get into my car to fetch the mail then get back out of the car again! Oh well, on the bright side, my bucket list travels and adventures were completed at a younger and healthier age.
  • Mary M   Jun 7, 2019 3:15 PM
    It is always a (perverse) comfort to me to hear about other people with MS dealing with their "invisible" symptoms. When I was diagnosed at quite a late age (43), it came with a double set of emotions. First, having seen others suffering from extreme cases of MS (my grandfather, a neighbor), I was very fearful about what it would mean for my future. Secondly, it was a great relief because I had for many years had such strange episodes of fatigue which would knock me out for days. Doctors didn't seem to understand. I would end up using part of my vacation after all my sick days were gone. I just felt like it was all in my mind and I must just be lazy. What a relief to find out there was a reason! Still doctors don't seem to understand, and I still face days of thinking it must just be me. But my husband is a rock! It took a long time for both of us to grasp that our lives had to change, and that I would not be as active as in the past. We now adjust our schedule as needed. The kids are grown, but we love spending time with our grand and great grand kids. We just know not to overdue. It's a long, hard adjustment process, but it still helps me to hear I'm not alone. Thanks to all of you for sharing.
  • Heather Smith   Jun 7, 2019 5:16 PM
    Your words bring comfort just in knowing somebody else out there gets it. Have a great day. Thank you for sharing what I fail to express.
  • Carla Strauch   Jun 7, 2019 9:28 PM
    Thank you so much for sharing. I have had MS since 2004. I get so fatigued. I need to sleep when I get home from work. I feel I am ready to go on disability but to stubborn to stop working. Everything is getting very challenging. Life in California is not the same. I am not the same. Carla strauch
  • Janet Scruggs Richard   Jun 8, 2019 11:45 AM
    I have never read an article on fatigue that explained it so succinctly. I wholeheartedly relate to your MS journey with fatigue, and it's unwelcome impact on your marriage. After 26 years with my husband and 31 with MS, we have a rhythm, an understanding of who we are and where we are with MS. Many people expressed concern to my husband when they found out that he married a woman with MS. My husband's response was "Everybody's going to die from something." I appreciate your article, thank you for sharing.
  • LINDA A ECKSTEIN   Jun 8, 2019 12:16 PM
    Meredith, thank you for sharing with us that which I consider among the worst MS has to offer. I too experience every symptom you sighted, and I've been forced into the same limitations as you. MS is a "taker". and while there's no cure, I'd at least settle for something that would successfully relieve the fatigue. Again, thanks....Lin
  • Robb Evans   Jun 8, 2019 3:43 PM
    I enjoyed the read and can relate to the fatigue. The problem is I don't think my family
    understands it.

    Thank You,
    Robb Evans
  • Kathy Eisenmenger   Jun 9, 2019 9:23 AM
    Dear Meredith: I read your blog with deep empathy and sent a copy to my husband. Since my MS symptoms slivered into my life I feel I've become a very different person. I'm a labor arbitrator and an attorney, but tomorrow will be my last arbitration hearing. It's been an arduous journey to pull myself up by my bootstraps to maintain my arbitration practice, but in the last six months I hit my Waterloo. And I was at the top of my game. I, too, have yet to find a truly manageable ways to navigate the fatigue, the sense of worthlessness while I lie horizontal with almost numb cognitive activity yet try to meditate through the coursing things that need to be done that I can't do. It's such a difficult thing to explain to people to help them understand and not sound as though I'm merely making adolescent excuses. I was of normal weight and physically strong and active. Now I'm 45 pounds overweight and a 2.5 mile walk causes such exhaustion that I nap fitfully for 2 hours. Nevertheless, it's imperative to press on, to continue to find ways to have a purposeful and fulfilling life. I am heartened by your writings in your blog and the responses you've received. Thank you very much, Kathy
  • Don Hillery   Jun 10, 2019 6:59 AM
    Meredith’s,I know how you feel with the fatigue.I have had MS for 25 years.The fatigue can ruin your day.What works most of the time for me with those days is exercise. Either the gym or my favorite is to go for a run. This seems to take my mind of the fatigue and on the run. It has worked 100 percent of the time. This how I do the fatigue thing. Any kind of exercise seems to work though. All the best to you.
  • Ed Griffith   Jun 10, 2019 1:12 PM
    Marital Equation article
    I am everything that article says and it has been rough. I was diagnosed ms 2003 my soon to be wife breast cancer 2004.
    Today I am that article, today my wife has metastatic breast cancer stage 4. Her fatigue is just as bad as mine.
    What keeps us moving ahead is our love for each other and having our Heavenly Father.
    Hang in there Meredith!
  • Nancy   Jun 10, 2019 8:07 PM
    Meredith, You have a wonderful way of writing & expressing yourself! I’m so sorry you have to fight the MS battle every day! Since I met you some 20 years ago, you have always impressed me with your kindness, sincerity, your love of family & your writing! You are a true “Warrior” who inspires others! You are in my thoughts and prayers. Keep fighting! Love, Nancy
  • Barbara   Jun 11, 2019 6:10 AM
    I've had relapsing/remitting M.S. for 50 years now. Lived in 4 different nursing homes. The challenging 'fatigue' is inevitable when one is challenged with diseases like M.S.
    I've learned to schedule 'when' I accomplish the different tasks that need to be accomplished.
    Keeping as positive an attitude and eating as healthy a diet as possible help. Don't forget to exercise as best you can. Re-training our muscles what to do and when helps fight the unhappy possible things that can happen.
    A smile on my face cheers not only myself but others with whom I meet.
    Attend a M.S. support group if possible. It helps talking with others facing this disease. Best of luck to everyone who has it!
  • June   Jun 11, 2019 10:52 AM
    Thank you for sharing your struggles so succinctly and well!
    I was diagnosed in 2006, but had had symptoms in my early 20’s. My mom had struggled for years before her diagnosis of MS, so she connected me right away with a neurologist doing research on families with MS.
    At the time, 1980, the spinal tap and my symptoms which mimicked allergies were inconclusive for an MS diagnosis, for which I am eternally grateful!
    I thoroughly convinced myself it was allergies and had 3 wonderful kids, a couple careers, a wonderful marriage, and I worked very hard at all.
    In 2006, optic neuritis flared and my optician said it could be MS.
    “Yes, that’s what it is,” was my reaction.
    My main reason for this comment, is to encourage all those readers who deal with MS.
    When I had to stop work, I felt I’d be able to go back part-time after I went through a short recovery as I had done before. It didn’t happen. However, the Lord helped me through my grief. I was able to engage in daytime offerings at our church for the first time ever - Bible studies, circle, and lots of new and old church friends!
    My fatigue and balance issues started to affect my daily walks, but my young new dog amazed me as she kept me upright and pulled me up hills and steps (our house is on a hill).
    So I did lots of research and with some early help in the process, I trained her to be my mobility service dog.
    She keeps me able to go and do things on my own. It doesn’t tire her (as it does people) to go slowly when I need.
    She also picks up my dropped keys, barks for help if I fall, brings me a bottle of water when I get overheated playing in my small garden, and makes friends with everyone!
    She is my joy, my service dog AND my therapy dog!
    If you are already a dog lover, this might work out as well for you!
    But whatever means of survival you choose, I wish you the very best.
  • Carol J. Graham   Jun 12, 2019 9:21 PM
    My first husband had chronic progressive MS, so when I was diagnosed in 2002, I was terrified, and was sure I'd be in a wheelchair within a year. Thank God and medical science for disease modifying drugs. I have functioned amazingly well over the years, but age (I'm 72) and MS are catching up with me. Because I've been blessed not to have to deal with many of the MS related symptoms, the intermittent fatigue I'm experiencing now is frustrating, irritating and embarrassing. I keep thinking I'm just not doing something right, but the rational side of me knows better. I slept 1-1/2 hours this afternoon when the weather outside was exquisite, there was yard work to do, housework to do, walking on a beautiful day to do (I am so blessed to have not had any MS related mobility issues), but all I could think of to do was lay down on the sofa and sleep. It did help some. Now if I could just fix my memory.
  • rmd21607  Jun 14, 2019 8:10 AM
    Hi Meredith,

    I wanted to reach out to you as not only a person that also has suffered with MS at times in my life but also as a previous representative for a major pharmaceutical company. Throughout my almost 9 years as a representative calling on neurologist that frequently were taught leaders at major academic institutions. It has been shocking and a palling to me the care that practitioners would recommend to their patients when there are much better therapies out there for MS. I to suffered with fatigue for many many years thinking that it was a symptom of the disease when it was actually the therapy that I was on that was causing the fatigue. I am no longer with this company but I highly recommend that you seek out one of the new oral therapies or possibly the new IV drug. I know when I went from an injectable to the oral my life change completely and I no longer feel like I have MS! Don’t listen always to your doctor as they are waaay too conservative.
  • Kimberly   Jun 14, 2019 1:09 PM
    Talk about a relate able blog! Thank you. I was diagnosed in 1989, I was 20. (a very rebellious 20 year old.) My doctor sent me to a support group and EVERY single person was in a wheelchair. I left that meeting literally telling myself "I don't have that (bleep)! I have only been to another once about 4 weeks ago.
    JOKE: What is the difference between m.s., and p.m.s.?
    Ans: You nag from a lower level!
  • Diane   Jun 15, 2019 7:46 PM
    Just got a chance to read your wonderful blog. I had been diagnosed for 7 years when my husband and I married. My previous husband had a difficult time with understanding illness. Ironically, later in our 27 year marriage, my new husband was diagnosed with Transverse Mylitis and needed my care. He said, "I was supposed to be taking care of you." I said, "when you love someone you do whatever needs doing. - you showed me that." He died 2 years later, and I miss him every day.
  • AP   Jun 22, 2019 11:01 AM
    This article touched me so deeply. My wife's MS has recently deteriorated and she is unfortunately refusing to adopt medical treatment. She has been diagnosed with secondary progressive and the doctors where we live tell her there is no real medical treatment - but even steroid treatment (tried once) really left very undesired psychological trail for her. It is very very difficult to make it work - especially when I can constantly see how MS , if treated right early on, can be a managed - albeit difficult - situation. I feel that we have really diverged a lot - mainly because of her choice to refuse any medical treatment options - and it really feels me with guilt to have to acknowledge my changed emotional situation amidst a very difficult battle for us and our family. I know it is very selfish to talk about my emotions when there is more at stake here - but wanted to share my experience as a partner of an MS patient and how difficult and relationship altering (and maybe terminating) it can be. God bless.
  • Jose   Jun 23, 2019 9:21 AM
    Thank you so much for sharing. It has knocked me back to my senses as I am on the other side of the very equation you describe. And, very often I forget what my wife goes through daily with her MS...the fatigue, numbness, aches, and the guilt.

    Seeing her struggling to still do her daily share of chores makes me forget that she has MS. Even though she insisted a long time ago that she does not want to appear that the MS is defeating her or that it physically rears its ugly head, making her look sick. And, by her incredible strength and determination to maintain a normal (pre-MS) lifestyle I often take for granted that she DOES have MS! So, thank you for knocking me back to reality.
  • Bob Detmers   Jun 23, 2019 2:07 PM
    I have had MS since 1991. It started after taking an antibiotics called Erthyromycin. I was ocean swimming and I developed an outer ear infection so this drug was prescribed. Serious fatigue set in, body rash etc.. I have never been the same since and I never heard of MS. Be careful with antibiotics.

    I have had to make many changes in my life. You can't fight MS, you have to adjust to the changes. If you are experiencing sore eyes, you are over doing it. You have to rest when you get tired. I am on CPAP so that I sleep better at night. Stopped eating all meats, as per my Neurologist. Meat takes a lot of energy to digest and I don't have any energy to spare. Meat includes all dead animal, fish, & chicken carcasses etc.

    I have gone to a totally plant based diet. I have to take 2 Amantadine tabs a day plus other supplements to keep my energy up. Heat and humidity are my worst enemy. If you live somewhere where the humidity is over 50% and the temps are over 70 degrees for most of the year, it is time to move. I moved to Montana @ 4,500 ft. that helps a lot, especially if you like to be outside a lot, like I do.

    I purchased an ice filled vest but that only helps when the sun is bearing down on you. If you are out hiking, like I do, internal heat builds up and you have to stop and cool down. The ice vest does not work when the humidity is over 50%. The vest covers my torso and affects normal perspiration.

    Swimming is the only real aggressive exercise that I can do any more, that keeps me cool. Just dump me into a mountain lake and I will see you later.

    I can't sleep if the room temp. is over 60 degrees.

    Difficult on a marriage or a long term relationship, you bet it is. I hope this Helps some MS Patients. It is not fun.

    BLDG Images.com
  • Andres Vazquez   Jun 26, 2019 10:48 PM
    Thank you for sharing! Your story really hits home. I am just now finishing up with my last round of steroids after a recent relapse. This relapse really shook me to my core. I was not able to feel my left side for a few weeks and had to start thinking about how life would be like if I lost all functioning. I have been with my wife for 10 years and we have been married for 1. I can relate with your story because for the first time ever I had to look at this and it hit me like a ton of bricks. What if I am not able to be there for my wife, what if its too much down the road, what if we have problems when we have kids. All of these questions are still swirling around in my head and I am just trying to make sense of it all. Thank you once again your story gives me comfort in knowing that I am not alone.
  • Ann Thorson   Jun 28, 2019 5:59 PM
    I got diagnosed in 2001 and it has been an interesting to say the least for the last 18 years. I have lost my job and am finding it difficult to find another, I have been told even though it isn't mentioned in the job description, of course this all of a sudden during the interview it is a requirement. I was put on an employment improvement, and forced to go to employee health because of my fatigue. The doctor was even shocked that someone would do that. sorry had to vent about the unfairness of it all
    I hope no one else has had to deal with this just because I don't look sick except for my cane. Care to all of you!!!
  • Dakota Huseby   Jun 30, 2019 7:15 PM
    I know it’s all relative. Yet, you and and I share much in common...the writers, the home-runners, then suddenly...it all changes. I feel all those emotions...except one day I completely broke and was fully disabled and got a surprise diagnosis of spms after being pushed off for years as stressed out, depressed, whatever.... and then everything I could do was gone with my family because we were very outdoorsy.
    It’s all relative, but I read your story and I would be so happy to have those times to walk, sit, go out, etc...
    Guilt? Yes, I’ve been there. But we must be real with ourselves. Do what you can but if you can’t, that’s science. 🤷‍♀️
  • SC - ILLINOIS   Jul 1, 2019 3:32 PM
    Meredith, thank you I felt like I was reading my own story. The guilt, the fatigue, the stubborn weight gain, the feeling like a million bucks after exercise class only to take a nap when I get home, the heat, the cold, the listlessness at times, my apologies... I have come to terms with it and am grateful I am not worse off, however I always feel hopeful that one day it will go away or improve. I stay hopeful as well as grateful for an honorable husband. 🧡
  • Michele   Jul 6, 2019 11:14 PM
    Thank you so much for sharing your feelings. I feel the exact same way.
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    april48  Jul 10, 2019 1:47 PM
    Thank you for sharing your story Meredith! I was just recently diagnosed with RRMS and I work Full time and a mother of 1 energetic 12yr old boy, my fiance of 3yrs is energetic as well and it has been a struggle every day. I am hoping that my soon to be husband understands my fatigue as well as my son. I take naps on weekends and I push my self as much as I can during the week. I honestly just want to crash on the couch or bed, but feel like I am missing out on the little things. Again, Thank you!!!!