Thursday, September 18, 2014

Wednesday, March 28, 2012 Diabeartes, Community Member, asks

Q: Becoming involved with a person with MS: breaking my heart

I am single (do not have MS) and have recently met someone who does have the disease. It's so difficult to meet compatible people, and although I am really excited to have met a great person, I'm nervous about getting too involved. It's a horribly embarassing thing to say, I suppose, but I know what the future would be like were we to become "serious" and I am not sure I have the strength to be able to be a 24/7 caregiver when and if it would come to that point. So I'm holding back on becoming close to this person and it's literally tearing me apart because I care so much for him already. Am I selfish and horrible to be thinking this? I'm far from perfect myself health-wise but I am completely self-sufficient and hope that I will be for as long as I can. The person I'm talking about is 45 y/o and although bound to a wheelchair or walker when not sitting or lying down, he lives a regular life, meaning he drives, volunteers for the local MS Society, takes yoga classes, goes to theatre, etc. If someone could please comment on their own similar experiences and how you handled it, I'd be so very grateful. Thanks.
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Answers (6)
Lisa Emrich, Health Guide
4/20/12 9:52pm

Hi,

Sounds like you have found a man whom you could love.  Being compatible is so important.  I haven't been in your situation as I am the one living with MS, but I'm sure that my fiance had doubts at some point early on in our relationship.  It's difficult to know what will be in the future for any of us and fears are understandable.  I wish you the best.

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Vicki, Health Guide
4/23/12 7:18am

Hi Diabeartes,

What a conumdrum -- a possible long-term happy relationship compared with a possible agonizing heartbreak. As with Lisa, I have MS, but I may have more information of interest.

 

When i was 45 I used a chair and a walker to increase my mobility, hand controls in th car, practiced yoga and had wonderful dinners with my sweetheart. Today, at 63,  I admit I am in the wheelchair and bed with significantly less mobility, using an accessible cab and less elaborate meals at home, but still with my sweetheart -- the same one. He tells me he is happy, and I believe it.

 

He knows he has the ability and right to leave if he wants to -- as long as he emails or visits now and then. I want to know he is happy with his decision and he will be welcomed back if he is not.

 

That was our bargain when we faced the same conumdrum. You have to decide what you think will work for you. This is just one example, but we think it worked, at least for almost 20 years.

 

Good luck with your decision. I know it is not easy. Vicki

 

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Diabeartes, Community Member
4/23/12 10:52am

Hi Vicki, you and Lisa are amazing people and are a testament that there are wonderful people out there who make lemonade out of the lemons they're dealt in life (I am the same with my diabetes).

 

So here's what happened.

 

On a recent gorgeous day, we talk a long time to go up and down the boardwalk along the lake.  He in the wheelchair and me pushing the entire way.  It was great exercise for me and it gave us the chance to talk about everything and nothing at the same time.  Afterwards we went to the supermarket to get something for dinner and came back to my place.  That's where it starts and ends, unfortunately.

 

My apartment is long and narrow and has hardwood floors.  The entry to my bathroom is the same, and since he really cannot walk at all we had a terrible time getting him in his wheelchair into the bathroom (I was afraid he had gotten stuck at one point and that I'd have to dismantle the door).  After he was "done" (pardon my brute honesty), he needed help getting put back together and it was a very stressful and extremely discomforting experience for me, let alone how embarrassing it must have been for him, although he took it in strides like the great guy that he is.

 

He couldn't get back in the wheelchair, and this was the awful part, so he had to crawl on my floor (since the hardwood is slippery) to get to my couch and it was a nightmare to watch him struggle to sit on the couch (he's 6'0" and I'm only 5'7" so I could not lift him), but once he did, it was cool and we had a great dinner on the couch, sitting and shooting the breeze and talking about lots of stuff, with no awkward silences, etc.  It was great, but then he had to use the bathroom again and it was horrible, everything from getting off the couch into his wheelchair and back into the bathroom.  It was too late by the time he made it to the toilet, and it was just awful.  My apartment was not designed for someone in this condition and so I realized then and there that I cannot continue to be anything other than a casual friend to him.

 

The next day I sent him an email telling him that, with the expectation that he would fly off the handle or start crying or whatever, but again, being the gentleman and mature person that he is, he accepted my sentiments and said he understood.  My heart was breaking so horribly, I couldn't stand it because I too have been "rejected" due to my diabetes and other illnesses in the past (depression).  But the difference is the physical part.  I am just not in that stage of my life that I can work around the wheelchair part and the strain (physical and emotional) that it will cause.

 

I feel like a real sh*t.  But I know I did the right thing, based on advice from many others, including my therapist who is a specialist in relationships and sex & sexuality issues.

 

Vicki, you and your husband are the luckiest people in the world, in my eyes.  You prove that love can be more powerful than anything and I hope with all my heart that you stay together for another 30 years or more.

 

Thank you for being a beautiful person and for your words of understanding and encouragement. 

 

--A

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Cathy, Health Guide
4/23/12 8:54pm

Hello Diabeartes,

 

My heart breaks for you because it is a difficult decision.  You know what is best for you.  But, of course, I want to add my short 2 cents!!  As Vicki and Lisa know, I was dating my husband in 1987 when I was diagnosed.  He stayed with me and we've been happily married, with a 19 yo son, since 1988.  Ups and downs have made us stronger - we are in this together.

 

We figure everyone in life gets something - whether it's MS or asthma or cancer, etc.  If you take away the "something" that person has, would you love them anyway?  The answer to that question is private and personal, but I thought I'd throw it out there.

 

Only you know what is best for you.  I pray you find your happiness in whatever decisions you make in your life.  We all deserve that.

 

Best to you always,

Cathy

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Vicki, Health Guide
4/23/12 7:20am

Please let us know.

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ouch, Community Member
4/25/12 7:47pm

I will never know how you feel, but I can tell you how your friend may feel. You see, I was told I have ms one year ago this May and the women that I loved so much for more the 10 years, 8 of them we lived together. However, when mt doctor told me I have ms it was three days before my 51 birthday. I went stright to the bottom of the emotional chart. I didn't know it was about to get worse, I went home and told my girlfriend what my doctor said. then two days after my birthday she told me she did not want to be a mother to me. her leaving me wasn't the hard part, it was the fact that she said what she said. I was always there for her and children then she did this.

So, I guess, it is up to you and how you feel about him deep inside, because that is where love comes from. I isn't can he walk, can he eat ect.... LISTEN TO YOUR HEART.

good luck and remember only a lonely heart knows.

 

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ouch, Community Member
4/25/12 7:48pm

I will never know how you feel, but I can tell you how your friend may feel. You see, I was told I have ms one year ago this May and the women that I loved so much for more the 10 years, 8 of them we lived together. However, when mt doctor told me I have ms it was three days before my 51 birthday. I went stright to the bottom of the emotional chart. I didn't know it was about to get worse, I went home and told my girlfriend what my doctor said. then two days after my birthday she told me she did not want to be a mother to me. her leaving me wasn't the hard part, it was the fact that she said what she said. I was always there for her and children then she did this.

So, I guess, it is up to you and how you feel about him deep inside, because that is where love comes from. I isn't can he walk, can he eat ect.... LISTEN TO YOUR HEART.

good luck and remember only a lonely heart knows.

 

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Cathy, Health Guide
4/26/12 8:04am

Dear Ouch,

 

I am so sorry about your girlfriend (and your diagnosis of MS).  I am sorry she did not have the strength that you do to face an illness.  I know your heart must be breaking right now, so I won't give you any cute cliched answers because I know love can hurt.  But I will say that "this too shall pass", day by day.  Take good care of yourself, always, and know that you are the best person you can possibly be.  You deserve only the best and I will say a prayer for you.  Keep us posted, here on HC, about how you are doing.

 

Best in health always,

Cathy

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stargazer, Community Member
1/10/13 12:03pm

It is better to have loved (and be loved) than never to have loved at all.  what if the situation were reversed?

 

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By Diabeartes, Community Member— Last Modified: 01/10/13, First Published: 03/28/12