Rlationships and MS

[Sailorsong]

Over the last few days there have been a lot of discussions into psychological issues (depression, anxiety, etc). So I thought it might be a good time to bring up another aspect of  what can cause these psychological problems in someone with a chronic illness like MS.  

Being a minister I have dealt with relationship problems of a number of people over the years.  Some times it was money problems. But the most prevalent problem I found was in a lack of communication. Without having good communication with a partner when you or your partner has MS can ruin a relationship very quickly. I know this for a fact because that is what ended my marriage within 2 years of  the onset of my symptom.  My ex-wife refused to talk about what she felt about my being sick and ended up resenting me for being disabled. I have been able to remain friends with my ex-wife over the years and it was only after her second husband also became disabled that she finally opened up and talked about her feelings.

When someone has MS there are several factors that can effect a relationship.  The first and the most insidious is the depression that can come with MS.  The reason that is so insidious is because a person with depression usually withdraws making communication even harder.  It is therefore very important to get treatment for depression so that communication can proceed.  

Another problem can be anxiety. This is really a multi-headed snake in that it comes in many forms. There is the anxiety of finances due to medical bills and lose of income since most homes rely on two incomes these days. As with couples with money problems coming between them I always recommend setting up a budget using financial software. But one important aspect is that within this budget you should set up a mad money account. This mad money account is used as a reward for keeping within the budget and the couple agree to something they really want it to be used for.  Most couples have used the mad money account for a romantic getaway.

Another head of that snake is the anxiety of what the future holds.  This cane be of the form of “Will my partner still want to be with me when I can no longer take care of myself”. And “Do I want to put my partner though taking care of me?”. Actually both of these can be what goes though your mind at the same time. This type of anxiety is why I am still single after almost 20 years since my divorce.  It is mostly the later form that keeps me from forming a relationship with a woman. If you are already in a relationship the answer, while still difficult, does become a little easier. There are really two tactics to use to combat the former form. First is relying on your memories of the times you were so sick with say the flu that your partner took care of you.  This can reassure you that they will still want to take care of you.  The second is to get your partner involved in your treatment and the research on what may be coming down the line in treatments.  In this way you will know your partner is fully informed on what is happening and will be better prepared to handle things in the future.

The later form of this anxiety is a bit harder to get a handle on.  On one really wants to be a burden for someone they love.  When I was a child I was privileged to learn a very valuable lesson in this area. My cousin had MD and I would spend my summers helping my aunt take care of him. He was totally dependent on others to take care of him. Yet his mother loved to take care of him because he always showed that he appreciated it.  I even enjoyed taking care of him for the same reason and I was just a kid. I remember I was really disappointed when I dad was transferred away from the area because I would no longer be able to spend my summers with my cousin.  

The final head of that anxiety snake actually effects both partners to an extent.  This is a result of the lose of the sex drive.  For the partner they can feel like the are no longer loved or desired. For the person with MS they can feel like they are letting down their partner. Again communication becomes very important. But here the communication must take more than just the verbal form.  Sure it helps to tell your partner that you love them often,  but that does not get the juices flowing so to speak.  Instead of sex give them a sensual massage, or take them out on a date like when you first met. Romance them!

Well this is so long I can’t remember if I covered everything I was going to say or not.

Dennis

[Quixotic1]

This is a wonderful post!  The effect of chronic illness and increasing disability on relationships is Huge.  We have discussed this before, but not for a long time.  Our disease redefines our roles in the relationship and often not in the way we or our partners have reckoned for.  The grief extends to all the people around us and so does the anger, the worry, the frustration, and the uncertainty.

This really can't come up enough.

Tahnks again,

Quix

[doni54]

I, too don't talk much to my family about how I'm feeling.  I guess being undx makes me feel like I don't have a basis for complaint.  When asked how I feel I just always say fine.

I know my hubby misses us doing things, like movies and just riding around in the country for hours or even just actually going somewhere together.  I seem to have become a recluse, and not known it.  I just don't have the energy to do anything, just a once a week trip to the grocery does me in for days.

I have one friend, whom I met here on this forum, whose husband left her because he couldn't deal with her deteriorating health.  I even tried to talk to him, but he just couldn't live with it.  My friend's condition, she has been dx with fibro and a pain condition, has worsened and her husband has returned, but things are still not good between them.

Thank you so much, Dennis, this is a wonderful post, and would make a great health page.  

doni

[Salamander2]

I am lucky to have a great 32 year marriage.  However, I will never take him for granted.
His patience with me seems to have no limits.  

We have cared for a couple of family members during an illness, and I think we both have it in our nature to care for others,  But,  we always supported each other during those times, and I worry about his having to deal with my limitations without any help.

I do believe that a strong marriage is key.  If you are already having problems, then I do think this illness could push it over the edge.

Heather-don't beat yourself up for losing interest in intimacy,  it is a result of the disease not your choice.  Instead of thinking you are not being fair to him, think of it as a tribute to how much you love him.  Kind of like a gift that makes him really, really happy :)

Blessings,
Sally

[saveone]

AMEN!!!

[Lulu54]

Hi, this is Kathy, oh, I mean Lulu checking in! :-)

A common symptom of MS is constipation - beyond the physical problem by that name I think the majority of us suffer from emotional constipation as well.  We hold back and retain so much because at least for me I feel like a broken record playing over and over the same things - I'm tired, I don't feel well, what's wrong with me now?, those types of things. How many times should I say out loud walking through the store wears me out, or I just need to sit a few minutes to rest about bringing a load of laundry up from the basement?   It seems to me its always the same things I want to vocalize.  

If I were on the receiving end I would get tired of hearing me, so I try to  restrain myself from talking too much about my symptoms.  Its sure a fine line between communicating dumping on our partners.

Be well, Lulu

[Sailorsong]

Thank you Heather and Alisa.

I don't know how to post a health topic and also I'm not sure if I found all of the typos and other errors in what I wrote. If someone could proof read it I would be more willing to post it as a health page.

Heather:

  Don't worry about calling me spitfire. I have done the same thing myself. In fact it was just a few days ago when I called Kathy "Lulu".

Dennis

[Heather3418]

Brain fog...my post meant to say Dennis, not refer you to Spitfire...sorry bout that...that's what has been happening to me alot lately..  Brain fog.  My apologies

[Heather3418]

I agree....Spitfire, I hope that you would consider posting this on the Health Pages.  It's a very important issue when dealing with ANY long term disorder.  Yeah, Spit, your article is THAT GOOD.

Heather

[tot_teacher]

A lot to think about and work upon.  Thanks for your insight.  Seems this would make a good Health Page.

- Alisa

[Heather3418]

I was very touched by your post.  It's a very important aspect of having a potentially disabling disease.  I too, am one that worries, whether my partner can endure the ups and downs of my MS.  I try to stay as active as the MS will allow, but often go off to myself, away from him, when I am in pain and just too tired to involve myself in the busy day.  I know that I isolate him and make him question why I don't share with him, on the days I am not feeling well.  I am afraid to spend too much of our relationship, complaining about the pain and my inability to do the most simple things.  I withdraw.

I know that could be the downfall of our four year relationship.  I worry all the time, that I will become too much of a burden physically and financially and he will seek out another.  I should be trusting his love, not pushing him away.

Our intimate relationship has become forced on my part, because I am either depressed due to pain and just so tired, that intimacy is the last thing on my mind.  I engage him anyway, despite how I am feeling.  I know that is not fair to him.  Or for that matter, to myself.  I do what I can to keep some type of normacly in our relationship.  I push and I push myself, until I cannot go any further.  It's the fear of losing him.

Thank you so much for posting on this subject.  I know it is happening to alot of couples, right here on the Forum.  This IS a subject we need to discuss and get off our chests.  Your words will stay in my mind everyday, as I try to have faith that this relationship will prevail, despite it's many obstacles due to MS.

Thank you again,
Heather