This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi

I have just joined the forum. I wanted to share my story, get some advice. And maybe just try to sort my feelings out by writing about my experience.

I met my partner in Feb 2010. He had only just been diagnosed with MS in Nov 2009. We fell in love and despite the diagnosis and the distance between us we decided to make a go of it.

The relationship was amazing. I have never met anyone like him. I was convinced that we would spend a significant portion of our lives together.

His symptoms have slowly progressed over the year and now the neurologists have seen visible lesions on his MR and reclassified the stage of his illness.

He has taken this news very badly.

Last wednesday he telephoned me and called off our relationship. He gave the following reasons
1. He couldn't ask me to live my life with his progressive deterioration/disability
2. He says that because of his illness he can't be the boyfriend he wants to be and hasn't been giving his 50% to the relationship
3. He says he believes my committment to the relationship and the support I would give him in life BUT that he doesn't trust his own head not to always suspect that I am just doing it out of obligation.
4. He says he needs to just live his life and learn to cope with his disease alone and he doesn't know how long this will take him.
And that during this time he doesn't want to hurt me or string me along.

I am heartbroken. I hate that he is suffering and won't let me help. I hate that he appears to be beating himself up and I can't get thrugh to him that it's ok to be sick and he can still have people in his life who love him.

He seems to want to protect me (and himself) from future heartbreak but in the meantime he's cutting himself off from the support and love I think he needs both now and into the future.

He's seeing a counsellor (although he never told the counsellor about wanting to end the relationship).

I am seeing a psychologist tomorrow to try and deal with this situation.

I am just at a loss. I miss him so much.

hi bacon

sorry to hear what you're going through.

there are plenty of folks here with loved ones dealing with MS so i'm sure you'll get lots of support.

i am a patient not a partner or caregiver but i remember going through a stage where i didn't feel it would be.. 'right'? ...'deserved'? to be in a relationship. all i can say is that in my case it passed. so far.

i am not sure how the distance angle plays into your situation currently, but my inexpert feeling is that you might do best to wait it out while lending whatever positive support you can in the meantime.

i would strongly recommend that you try to interest your partner in building a diverse support system. not that i'm biased but if he came here to commiserate with a sympathetic network it might help.

whether or not any of that is useful, welcome to TIMS, everyone's here for you

jimmylegs

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Thanks.

Distance-wise we live 1000km apart.

I am stuck here finishing my PhD and he is stuck there with a new and career-defining job.

We were seeing each other about once every 3 weeks for a long weekend and the occasional week long trip.

I know he has a lot of friends around supporting him at the moment and I have the same.

I am deep down hoping that this reaction of his will subside and we can work it out but I also need to be realistic that this may actually be the end and I need to face up to that fact.

Thanks for your reply.

hi

just a quick update.

He is talking to me on phone. He believes that he probably has depression and wants to seek treatment for it. He says he still loves me but doesn't want to see me while he's sorting himself out.

I have agreed to give him some space to do this.

I love him. I want to spend my life with him. If all I achieve is the knowledge that he has sort treatment and is happy then I have done my best and can live with that.

Thanks

Hi Bacon. 10 years ago I met a great guy who happened to live in Florida and I lived in Washington state. I was going on year 7 with my MS shadow and told him often how I wouldn't put him through wheelchairs and the like. We maintained a long distance relationship for almost 7 years. I did everything in my power to push him away. I even made sure he saw me on 'roids with the acne and crabbiness.

He moved to Washington state and we were finally married August 2010!

Don't give up on your guy. Having the diagnosis of MS is a burden itself and we don't want to share that with any other person.

My MS is kickin' my butt. I had to leave my career I loved and my identity with it. I/we are starting to make a new rhythm and life is good.

The thing that won me over was the constant reassurance I got from Brian. He told me the things about me having MS that he hated but he also told me about things he loved about the MS...the parking!!

Be patient and let him know that you need him.

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Diagnosed 1994, Self EDSS is 6.5

Thank you.

This gives me some hope. I'm 2 weeks into our agreed no contact period. Still only early days I know. Miss him so so much. Via facebook I can see that he's getting out more and spending more time with friends. I hope this means he's seeking treatment for his depression and relying on people more for their help and support.

Hopefully we'll get back together when he feels that he can share his life with me and that he's not burdening me with his MS.

Hi

So our agreed no contact period ended last week. I called him on Tuesday but it wasn't until 3am Sunday that he returned my call. He was drunk. My phone was off and he left me a voicemail telling me that there was no space for me in his future. I have read his blog. He thinks that he has returned to alcoholism, he's gained weight, he's depressed and not seeking treatment for it. He's also gotten a really bad tattoo. I think he has just given up on his future.

I have mixed emotions. I am so sad that I couldn't help him. I love him and want to be with him. But at the same time I think e's done quite a noble thing and chosen a new life for me that doesn't involve living with his alcoholism, depressiona nd MS.

I guess this is where my MS journey ends.

Thanks for listening.

hi kind of struck me 2 read how u want 2 stay so bad/ myself am the 1 w ms still get around sort of okay but my spouse is sayen bye bye or 2 put it best kicken me upstairs we own a dbl / feel very very hurt but not surprised we have teen who doesnt hesitate 2 say f u etc at any given time/ so it would seem tough 4 u/ i no in my heart that she dont want 2 stick 2 see me slide and no matter how hard u fight u slide/ so good luck 2 u give u lots of props/ i myself have decided 2 do a little exploring not sure i want a girlfriend but some companionship would be nice always did fairly well / seems lke tough line 2 draw between spouse and caregiver/ anyhow ---STAY STRONG

I don't mean to be snooping, but this sounds like a terrible cry for help. If I were in your position and my partner had MS and was behaving this way, I would pay them a visit after I was done with my work. In person, I would want to determine where the relationship was going (I'm either staying with you or you don't want me here). For me, at least.

There's something else I'd like to add: 2 years to go to progressive is an awfully short time. If I were you, I would look into persuading your partner to pursue an antibiotic regimen. It just sounds terribly familiar to Sarah Longlands story. She was diagnosed and was progressing rapidly. Her husband, a microbiologist, decided to treat her with antibiotics aimed at eradicating the pathogen: C. pneumoniae. You can read about their really touching and intelligent account here: http://www.davidwheldon.co.uk/ms-treatment.html. It also includes a very feasible regimen.

Being a graduate student and pursuing a Ph.D., I imagine a little bit of extra, light reading can't hurt.

Oh yeah, lest I forget to mention. Sarah Longlands had an almost complete reversal of her MS symptoms (I would venture @ 95%) with no new relapses or additional symptoms after stopping antibiotic therapy. And she posts here under the name: Anecdote, in the Antibiotics forum. Just something to consider. She's awfully nice and willing to answer any questions in PM.

Ya know... I've had similar thoughts to the original poster's SO; I don't think I could live with myself if I thought I was dragging someone else down with me. I feel that the relapses are getting closer together, and it's very embittering.

If I thought for a second that I would just become a burden, I'd cut myself away, and I'd self-destruct in short-order. I couldn't put another person through my personal hell.

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I refuse to fail, to kneel or bow.
No power in the 'verse can stop me now!