Men - how does your SO deal with your health?

[MarksMS]

I hope numerous men with MS respond to this thread, we males have been pretty quiet of late. I'd love to see a separate thread for women w MS  and SO caregivers on this forum.

I'm wondering how your SO has dealt with your Dx, both initially and over the years.

My background, I'm 61, live in CT, Dx'd in February 2000 after my first MS event on Jan 1, 2000. My wife is my second wife (we met in August '84), my wonderful kids were in their 20s and living in SF and Seattle. I have been taking Tysabri for 3 years, taking Ampyra for 3 months, can still walk short distances, enjoy life. I was laid off in Sept 2009 and love being retired. I am a fortunate man in many respects, lucky in many areas. I was an active backpacker, cyclist, gardener. These days I read almost as much as I want, see friends, and spend too much time on the web.

I'll start  this thread by saying my wife was very worried when I received my Dx but never told me how worried she was until very recently. For most of the last 10 years she was very supportive, took over some of my household chores - taking out the trash and changing the cat litter along the way - I still cook, do my laundry, use my scooter to shop, visit the library, museums, and travel. My major MS issue is a weak left leg and depression that is very well controlled by Effexor XR. My spirits are very good.

My wife has had a variety of health issues since my Dx, she is dealing with depression and I don't know what else these past few years. During the last two or so years she has distanced herself from me, passion is gone, intimacy  and sex have gone almost to zero, and she has become even more involved in her job and her 80+ yo parents than ever before. She comes home late as often as she can, spends hours responding to work related email.

I live in SW CT in a "good" suburb, not on CT's Gold Coast but in Fairfield County, we live in a house with universal access because of a new kitchen, new bath and 4 ramps giving me access to the world, a project that stretched over almost 3 years. My wife loves the place, my engineer's mind very pleased by my success in designing the changes and selecting materials and contractors.

The problem is I find this suburb a fine place if you're working, but boring. I'm 40 minutes from New Haven, two hours each way from driveway to Grand Central Station in Manhattan if I take the train, and once I'm there 30 minutes from museums and SOHO, SONO, the village, etc. Too far, too expensive  given my fatigue and visceral dislike of sitting that long despite my desire to finally spend days wandering through Manhattan.

My wife is a social worker who loves her job, loves her equally crazy parents, and has grown increasingly distant. Over the past few years my libido has remained high, hers has vanished. She is OCD and could work till 11 PM or later seven days a week, as long as she didn't arrive in work before 10. She shows up in our bed to sleep while I'm awake twice a week at most.

She recently told me she is worried I'm going to become totally disabled or die. The latter is definite, the former unknown, but the distance is real, her rejection painful.

We've talked about our plans for the future, I will move to San Francisco soon, she wants to stay in CT, care for her parents, play computer games and work.

I've decided that I will do my best to enjoy each and every day, I want to live somewhere where I can roll out my apartment's front door, take an elevator to the street, and be within 30 minutes of dozens, hundreds of galleries, cafes, book stores, museums, women worth watching, restaurants, wine, etc, etc, etc.

I will be filing for divorce all too soon, I've been looking at dating sites and hoping to live a fuller life.

Mark

[Csativa]

My wife and I met back in 88' and there has been no one else or turning back since then.  We were recently married - this past June.  It certainly is a long time in between.  Don't ask, it's a really long story.  Yeah, yeah, yeah, I know; most of you are probably saying or thinking "typical man." LOL  Seriously though, there are several valid reasons why it took so long but I forgot what the hell they are!!.  We both would have liked to marry sooner, but this is how it worked out and we are both OK with it.

Deb (my wife) has been with me through thick and thin (mostly the thick) For starters, she knew immediately that I have neurofibromatosis.  She also knew the potential consequences of the disease.

About 5 years after we were together, I began to develop the first signs & symptoms of degenerative disk disease. I was still able to work at the time and after several months, I was able to return to almost the previous level of functioning.  Slowly, however, the disk disease grew steadily worse.  Throughout the time up until the present, I was experiencing symptoms of MS.  I let her know that this had been occurring since about 78', but was not able to get an “official” diagnosis.

Now at this point, I knew that she was a bit loopy, to say the least.  My self image, although steadily improving as our love grew was not enough (dumb a_ _ that I am (LOL)  to make me understand why she was not running out the door screaming “what the h_ _ _ am I doing?!?!?

Then this past May, I finally received the “official” Dx of RRMS.  Despite this fact, Deb and I were married one month later (well, we had been planning it for about 6 months.  Deb has been absolutely supportive in every respect.  Now that I am retired/disabled she maintains a full-time job in a pathology lab.  

Besides working full-time she does so many other things.  I try to help out as much as I can, but she carries the brunt of everything.  I hate it and love her for it.  I do feel guilty because I used to do so much; working full time +, cooking, cleaning, shopping, maintaining the garden/landscaping, etc...  It hurts emotionally because so much falls on her now.  

She has been exceptional, however, in helping me to work through my guilt, however, irrational it may be.  Although not married until a few months ago, we have, for the past 20+ years, treated our relationship as marriage – living to the fullest extent, “for better or worse.”  I am not sure how much more I can say so I'll say FIN

Frank  

[Lulu54]

This is a bump for a few of our male folks who I hope will join in this important conversation.  

[poker247]

I am a male and I was diagnosed with RRMS in March '09.  My wife and daughter are very compassionate and understanding, however myself I feel like a failure. I do work full time as well as a side job, but unfortunately that is the only thing I have energy to do. After working all day I am usually asleep shortly after dinner. I have weekends off... although I usually spend the entire weekend sleeping just to recharge my *battery* enough to face another week of work. So time spent with family and friends is very minimal. A good example is this past week. I work in the medical field and there are normally 4 of us. 2 of my coworkers were on vacation and the 3rd was on bereavement leave for losing her Grandmother. I spent the week working alone doing the job of 4 people and now I am paying for it. I am extremely fatigued and ache all over, and because of this I was unable to go apple picking with my wife, daughter, mother in law and our friends. I feel like life is passing me bye and I am missing the important stuff

[johnniebear]

Thought I would bump this up..

Any other men out there please chime in...

[essdipity]

There are so many women here that we get a great deal of insight from them about how their MS lives are going.

We need much much more from the male perspective, and these posts are a wonderful start. We welcome your thoughts and experiences, guys, and of course, your plans and hopes for the future.

ess

[johnniebear]

Hello,

Just like MS that is unique to each of us, I've found out the way each family & friends deal with us is unique  aswell.  

I'm very guarded about who knows that I have MS, certain family where told in person first,   my wife & I only told  our family  after I had the Dx & only then few select friends.   I have one friend since I was 22 has chosen to not  call me or  visit, and when I see him out in public he does  greet me and that's it.  I've moved on as much as that hurts.

I guess what I can offer is that no matter what nothing lasts for ever,  here's  a little something that I've read ,  this seem to sum it up for me..



                             Some say I am disabled,
                             But you know that isn't true.
                             I simply have a challenge
                             A little different from you.

                             My slight inconvenience, has taught me
                             Things they could not know.
                             Each obstacle is a victory,
                             Enabling me to grow.

                             I'm not really any different,
                             I cry, I laugh, I snore.
                             I don't want to be treated
                            As if I'm not a person anymore.

                            Out of good intentions,
                            People are afraid to let me try.
                            But sometimes I have to fall,
                            And sometimes I need to cry.

                           God gives me strength and dignity,
                           And the courage to be all I can be.
                           For He doesn't see me as disabled,
                           He just sees me as me.


Welcome to the forum, and I wish you the best.

John

[Sailorsong]

I also have divorced my wife (1992)  when she would not even try to deal with my illness. This was within 3 years of my developing symptoms (1989).  This was after 23 years of marriage.

I am now 60 but personally with all of my health problems I don't even try to find someone to be with. I do try to get out at times to enjoy nature ( have enjoyed that since I was 10 ) and still wish I could go out sailing once in a while but I could never handle the sails any more ( sold my sailboat in 2000 ).  

Dennis