arrow20 Comments
  1. Gregory G Cutler DVM
    Aug 10 - 1:16 pm

    Very touching story, so nice that you’ve been able to stick it out through “sickness” as well. Happy 50th!!!! Something here for many of us to learn.

    Greg

  2. Issie
    Aug 10 - 1:31 pm

    Carol,

    I so appreciate your writings. It takes a brave woman to expose her soul and do it with such grace and eloquence. When we expose ourselves to others, we never know how we may be received. But, there may be something that we say that may give another person the courage to continue on in their fight. Something that may allow someone to not feel so alone, in a body that daily gives us a list of unknowns and constant challenges.

    Those of us that are married and have been for a long time (33 years for me), know how hard it can be on our spouse. We are having to live in our bodies and we know how we feel —but, the person looking on and not experiencing the internal turmoil can not possibly completely understand. It takes a very special person to accept what is totally beyond their control and not be able to fix it. When they said their “I DO’s”, even though it was for “better or worse”, we all go into it thinking “for better”. It takes a strong person to honor their vow of “for worse”. We knew when we found those “special mates”, we found a true gem. But, there are many others that did not. I feel especially sorry for those that did not find someone that would stick by them.

    We all need the reminder to try to be “selfless”, and trying to realize the importance of allowing the special people in our lives to be able to continue on with their lives —when we had all intentions of continuing on with them. It’s not fair of us to hold them back, just because we, by no choice of our own, can’t go hike a trail or stand under a waterfall. I can live through the experiences of my husband – who tries his best to bring me into the experience even when I may not can physically be there. I can experience it through his eyes. If he wasn’t having the adventure – then I would not be having it either.

    I think that sharing our lives with others, makes us all not feel so alone in whatever we may have to deal with. Thanks for sharing your life with us Carol! What a beautiful picture you paint. Happy 50th!

    My personal goal is, when I take my last breath — is to have no regrets. I want to be able to say, I have done everything I wanted to do and have friends and family surrounding me that feel that I have taught them something of value.

    I wrote something that I try to live by:

    Don’t think about how it was before — that was yesterday. Look forward to tomorrow and think about what you can do “GREAT” today. We can’t undo or redo yesterday. We can live today, and we can DREAM for tomorrow.

    Issie

    • Carole
      Sep 02 - 10:45 am

      Issie- You have the most inspirational post.

      Thank you,

      Carole

  3. Rich Perillo
    Aug 10 - 3:57 pm

    A very compelling story. You seem to be a born writer. Although, sometimes, I think it is a little easier to be a woman with this disease, than a man. Simply, because in many ways, more is expected of a man. Especially, when there is no diagnosis, no cause. A man can’t be neurotic. He can’t just break down and cry it out, like a woman. He is the “provider”!
    It also seems you were very fortunate to have resources, which many of us, do not. Probably, more than anything, that is the most compelling and compounding factor, worrying about making ends meet.
    Regardless, it is a horrible disease, no matter who you are. RP

    • Darlene
      Aug 10 - 4:59 pm

      Hi Rich, I get what you mean about how hard it would be to have this disease as a man. I have 3 children, two boys and a girl, and I can hardly bear the thought that one of them might have to deal with this. (I think there is a genetic predisposition in my family.) I used to worry more about my daughter since women are most likely to be sick, but as my sons get old enough to start families it begins to dawn on me more fully how hard it would be for them to provide for a family, or how devastated they would be if they were unable to work. I try not to worry though, because it won’t keep my kids from getting sick and will only make me worse. Best wishes to us all, this IS a horrible disease, no matter who you are.

    • Carol
      Aug 12 - 1:51 pm

      Hi Rich,

      Yes, I am fortunate to have the financial resources that allow me certain pleasures and activities, as well as the ability to sustain daily living. I didn’t become ill until I was 55 and able to retire with a pension and generous health benefits. For this, as well as the fact that I had already raised a family, I am grateful.

      This cruel disease is made even crueler for ME/CFS sufferers with serious money problems brought on by their inability to work.

      Carol

  4. Darlene
    Aug 10 - 4:29 pm

    A true love story! 50 years is quite a milestone, CFS or not. My husband and I are halfway there. Many kudos to him, most of the past 17 years have been something of a nightmare for both of us. I love hearing examples of supportive family members, and wish we all could be so lucky.

  5. Cheryl
    Aug 10 - 7:07 pm

    Thank you Carol for your story. It is so nice to hear of the spouses who have been determined to hang in there. My husband and I have been married for 35 years and he has promised that he is in it for the long haul. That floors me sometimes, even though I am grateful and blessed. Why would anyone want to stay married to someone like me who is so sick and can only have a shell of an existence? I have to tell him all the time to stop talking because I am in sensory overload, I can no longer trust myself to drive, and I need help with all the household chores now. He runs all the errands and is sweet and kind enough to wash my hair for me. No illness is nice, but I think the ones that stick around for us with this nasty disease are braver than most. I feel for my friends that are alone. I would love to see an online chat or support group for our caregivers to give them an outlet. I am glad that your husband takes time to get away. I wish mine would, all caregivers need to have their own needs met and batteries recharged.

    • Cort Johnson
      Aug 10 - 8:46 pm

      Congratulations on your husband. He gave his word and he’s kept it no matter what. It’s very inspiring…

  6. Bonnie Tucker
    Aug 11 - 5:32 am

    The only problem is, I want to be the one that walks the mountains………

  7. Valerie Free
    Aug 11 - 7:24 am

    Carol, this is familiar to me as well. Ill at 30 and very active before that, my husband and I just had our first-born. I was a new mom of one year when “the flu” hit. My husband is a very independent person who can keep himself very busy and is creative beyond words. He likes his alone time…to a degree. It was very helpful that our business is on our acreage in a separate building so that meant that he was always around while our daughter was growing up – and I was struggling. Although he has never dwelled on the illness itself, it must have been horrifying to witness as things went from bad to worse. He also no longer wants to hear about it, 23 years later, although it is the biggest part of my world, writing and CFS community. So I do keep quiet about it and the CFS community fills that void for me.
    It is harder now because he has more time and freedom and a little extra money to travel, but no partner to go with. This is heartbreaking for everyone.
    We really need to find effective treatment. All our efforts should be on that.
    He has always taken trips and motorbike rides whenever he has the chance. It was also very hard for me to get used to being left alone, especially when feeling helpless half the time. But somehow it works out and now I am confident I will survive these periods of aloneness.
    But in the end, I wouldn’t mind a walk in the mountains myself.

    • Carol
      Aug 12 - 2:00 pm

      Hi Valerie,

      It really does help to hear how similar our spouses’ reactions have been. And I’m sure it would help if, as Cheryl has said above, these spouses could share their experiences and feelings. I’m not sure, however, that Steve would take advantage of such an opportunity anyway. He does, however, frequently surprise me, so who knows?

      Carol

  8. slp
    Aug 11 - 3:43 pm

    Thanks Carol, for sharing your chronicles. I believe all of us with ME/CFS go through similiar journeys….from trying to get diagnosed….to Dr. shopping….to trying any possible treatments in our quest for health….. then continously cycling through the various stages of grieving, coping, hoping and accepting.

    BOTH my spouse and I are severely affected with this horrible illness….you can imagine the nightmare with BOTH of us unable to work and basically homebound. What does one do when you need your partner to be your caregiver….but now must try to be your own caregiver and also be your spouse’s with this debilitating illness?

    Talk about a CFS marraige…..ours is indeed!

    • Carol
      Aug 12 - 2:04 pm

      Thanks for responding, slp. I can’t imagine how you and your husband manage. I hope you have compassionate and helpful family and friends nearby, along with other kinds of resources.

      All the best,
      Carol

  9. Carole
    Aug 12 - 7:13 pm

    Carol- I hate to be the fly in the ointment here-but I do have a few questions.
    !- Was your husbands Therapist a male or female?Did you go also?
    2. If the situations were reversed, would you be taking these ESCAPES so you could talk or listen to your very ill spouse when you got back from vacation?
    3. All caregivers need to get away and have space. His were Expeditions of monumental size.
    4. You are much more forgiving than I would be , when you are the one suffering.
    5.The fact that he would not listen or talk to you as sick as you were-was SELFISH.
    6. The EXPLANATION ” This way I can come home to you and listen sounds like a 2 yr old.
    7. If you are satisfied with this it is your life-as you may not have a choice.
    8. I just know I would resent the Hell out of someone going on these Extreme Getaways
    and not feeling any remorse. A fishing trip should suffice.

    I applaud your patients with HIM.

    MY BEST,

    Carole

  10. Marcie Myers
    Aug 16 - 6:26 pm

    Dear Carole and the rest of you,
    I was not so lucky. In fact, I think I have PTSD added to my CFS consequent to how my marriage ended. I was diagnosed in ’94 when our daughter was only 7. I was Nurse Manager of 2 SC Correctional Clinics, we had built our house while I was pregnant and brand-new at my job. We moved into it when Erin was 2 weeks old. At 6 weeks, I returned to work, a very demanding job but one I loved. My then-husband continued to throw all the load on me: child care, grocery shopping, house cleaning, paying the bills, and everything else. In 1997 we moved into the “mansion” that we’d contracted and built ourself. Our other house was just fine by me but I followed my husband’s (and everybody else’s) wishes. By summer of ’99 I could no longer put one foot or one thought in front of the other and was forced to quit my career. He KNEW I had CFS but it never concerned him. Just me. By early 2000 I discovered quite by accident that he’d hired an attorney and had the divorce all planned out. In SC “Mental Abuse” is not a ground for divorce so he set about driving me over the edge. He completely stopped talking to me even to this day He would repeatedly take our then 12 yo daughter under his arm and say to me: “WE don’t want you anymore”. I know I don’t need to tell any of you how this felt and how it only served to make me sicker. In August 2000 I was forced to move out of our house with the last shred of “me” left. He wanted sole custody of Erin even though I had been the one there for her always while he went fishing, hunting, etc. I can’t even bear to finish this…. it has forever affected my relationship with my daughter, now 27. I have been totally alone now for 13 years. To the person who thought that your husband was being too nice to you and too nice to himself…. you must not have a clue! The price some of us have paid for having a chronic illness that is not only out of our control but one that stress only worsens is too horrid to even find words for. Cudos to all of you spouses that have hung in despite it not being well and good. I wish I’d had someone even close to you all. marcie

    • Carole
      Aug 18 - 12:07 pm

      Marcie- My heart breaks for you. I can’t imagine anyone treating another human being that way-particularly an ill spouse and then taking your daughter. I know this is easy for me to say-“But you are better off without him” I have found out from therapy that some people are not capable of responsibility and kindness, and if we keep expecting it from them we will constantly be disappointed.
      I can only hope he is responsible for your medical costs.
      If you are referring to me about not having a clue- I have been ill since 1996. My husband has had numerous serious accidents. Some because he will not listen to his Dr. or me. In 2009 alone he had 8 surgeries in 11 months . I had almost been in remission- then another accident fell off of the roof after a few beers.
      broke both wrists, , shoulder, third concussion in a row, had to have hip replacement surgery 5 times. knee replacements. From that accident on I have gone down hill. Just started getting better a few months ago. I have paid my dues. I expect him to take care of me as I took care of him. He is a Professional with a PHD. Just having someone there is not always the answer-it has to be someone you can rely on at least part of the time. I am so sorry for your desertion-As I said in my post to Carol-He was selfish!!!

      Do you have good medical care? Do you have a therapist you can talk to?
      We have been married 37 years. Just in case, he does decide to flee the coop- I have enough set aside to take care of myself. I have 2 businesses
      I own and I run-without his help. We have 5 children . One will help me.

      Thank GOD. Carole

    • Carol
      Aug 18 - 1:50 pm

      The disease itself is devastating enough, both physically and emotionally, but to have to cope with not just indifference but actual hostility from a spouse is beyond imagining. I hope you have supportive family and/or friends who help you cope.

      All the best,
      Carol

  11. Wendell Pace
    Aug 30 - 1:12 am

    Wow, c’est article est fastidieux, ma soeur ces ces sortes de choses, si Je vais dire elle.

  12. Carole
    Sep 02 - 10:52 am

    Marcie- Just to let you know. I think of you everyday and hope peace is with you when you need it most. You are a survivor -I can tell. Sometimes when you are sick, that may not seem like enough.
    Please seek someone to talk to – non-judgemental counselor.

    My Best

    Carole

Mobile Theme