Helpless - breakingup and being diagnosed with MS

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Helpless - breakingup and being diagnosed with MS

Postby Sharla » Wed Jul 17, 2013 4:00 am


I'm not one to post on message boards, but I feel I have no where to turn besides people who have been through the diagnosis of MS. My partner of 1.5 years just broke up with me because he's grieving, not coping with the physical and emotional aspects of being diagnosed with this disease, and feels he can't be the 'boyfriend I deserve anymore' (his words, definitely not mine, no way near my thoughts or actions).

He is a professional, outgoing, athletic, gorgeous, charismatic man who is currently having an utter identity crisis. I love him and have been the best girlfriend a guy could want, and I fully logically know and understand his need to take care of himself and want to be alone at this time. I gave him all the space he needed, no questions, without asking for a thing in return, in hope that he would want me beside him eventually when he's ready, in his own time. He's 30 and I'm 28. But he called it quits on Sunday, not wanting to drag me down with him and unable to focus on anything but himself (his words again).

It's been six months since he first got the optical nueritis, and so I had been secretly googling all about MS since then, in the hope of helping him through whatever he's going through in case he ever needed my support. I've never pushed the point of discussion and have been patient, waiting for him to come to grips with this new reality. But more recently, he's been trying to block it out, partying, drinking a lot, doing all the bad things which he shouldn't - to which I understand would be his need to want to block out what's happening to him, and I've never stopped him from doing what he has to do. Physically, his symptoms have become more apparent and he's vocally accepted he has it. He goes in for a second round of MRI's this week. But we both know he has it, his symptoms just tick all the boxes. He feels his body is changing and his eye sight is gone from one eye from the optical nueritis. He can no longer play sport - a passion in life.

He told me he's pushed everyone out of his life (he hasn't dared told his friends about it, and his family lives on the other side of the world). He has chosen to "block the world away". He describes it as a dark cloud which won't go away, he doesn't sleep and is finding it hard to put on a happy front to get by each day. The weekends have been spent drinking and partying into oblivion.

We are keeping in low contact. He doesn't want me to worry about him, but naturally, as a woman who loves him, I do. I don't know whether it's right to just let him go, or do I keep in light contact to subtly inform him I'm still here and not going anywhere anytime soon... ?

I want to know, if there'll be a time he'll come out of his grief, and get that instinct of survival inside, and eventually want me/someone back into his life? It's heartbreaking he wants to go through it alone. I feel helpless. I don't want to be with any other person besides him, regardless of what the future may hold, I want to be with him.

I have my own life, youth, ambitions and a great career. My head is pretty screwed on so to speak. But I'm confused by this since we had no real relationship problems. Should I dissapear from his life and get on with my own, am I staying in vain, hoping the dark cloud will lift and he'll be wanting my love again?

It's been a horrible journey for him and myself as many of you would know. If you can let me know of any stories similiar to mine - good or bad - of where the partner with MS comes back or leaves for good, do let me know. I'd really appreciate any kind of guidance and insight.

Thank you for your time, from the bottom of my heart.
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Re: Helpless - breakingup and being diagnosed with MS

Postby jimmylegs » Wed Jul 17, 2013 8:57 am

hi sharla welcome to TiMS

sorry to hear about your situation. there are many ms caregivers here on the forum and a fair number of folks also who go through a breakup with ms in the picture.

it's hard to say what he will do since not everyone reacts to diagnosis in the same way. i'm going by gut feeling here, but I think if you move on right now, you may help validate the self-destructive trend he's on. you're not responsible for his mental health of course, but it might be good to stick around for a bit longer.

I can personally relate to his inability to focus on anything but himself. I think it took me about 3 months from diagnosis to kind of look around at other aspects of my life again and remember what I had cared about before. don't take that as any kind of timeline though, because of course everyone is different. you'll have to go by feel.

this probably won't be any comfort to him right now, but it might be some to you - I went into fight mode when I was diagnosed and although I was no angel in terms of looking after myself, I set up a diverse health team with the ms clinic, family doc, physio, counseling, naturopath, dietitian, etc. I only went to each of these various specialists one or two times but I never focused on meds and decline. I focused on 'what have I done, and how do I fix it'. I also set and accomplished more than one goal associated with sports, since my jobs and volunteering involve outdoor recreation, outdoor education, outdoor environmental stuff. so now I can say that I got better at this and that after my diagnosis and screw you ms. have at it.

now mine is a pretty mild case and I did not present with optic neuritis so I don't know exactly what your partner is up against by any stretch. but if he is a go getter in other parts of his life, hopefully in time he will find that spirit to fight against decline. it's good that he's got a reader in his camp, traveling the learning curve while he has a bit of a crash :) what have you learned so far?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Helpless - breakingup and being diagnosed with MS

Postby lyndacarol » Wed Jul 17, 2013 7:32 pm

Welcome to ThisIsMS, Sharla.

I am simply a person with MS; I think a professional counselor could give you the advice you need. I can only offer you what seems logical to me:

Examine your own feelings VERY thoroughly – if you choose to stay with him, it will not be an easy journey; if you choose to move on, no one can fault you; each of us has our own direction in life.

As for your partner, there are well-known stages of grief (and he IS grieving the loss of his old life and plans); a professional can help him through each stage.

In the meantime, a healthy diet and lifestyle will help him find his way back, I believe. Partying and heavy drinking WILL make MS worse.

In my own case, the love and support of my husband is VITAL to me. He has reassured me over and over that he will always be with me, that we will go through this together – no matter what comes.

All the best to you both.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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Re: Helpless - breakingup and being diagnosed with MS

Postby Jimpsull » Wed Jul 17, 2013 9:36 pm

MS is one of many challenges people can face. When couples face challenges they should draw together to face the challenges with their combined strength. It sounds like you are ready to do that. Would he have gone running for the hills if the shoe were on the other foot? If not, he shouldn't expect you to either. There are things he can do to slow the progression. Many hands make light work and you are on his side. He needs to appreciate your fidelity and stop wallowing in self pity.

Pride can be a big obstacle. He is trying to play the martyr in saying he doesn't want to drag you down with him. That is BS. A life with no obstacles or adversity isn't somehow better than an easy life. Tell him to give you the opportunity to be strong for him and with him. If he wants to fight, let him fight together with you by his side.

That's my two cents. I have had MS for 10+ years, and it sucks. My wife has battled alcoholism - that has sucked too. But we are together through thick and thin, for better or for worse. If that's the type of relationship you have with him, he will fill his life with regret by turning away from it.

MS isn't a death sentence. Tell him to get a grip on himself.
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Re: Helpless - breakingup and being diagnosed with MS

Postby Sharla » Thu Jul 18, 2013 7:45 am

Thank you for all your responses and expressing your experiences. I agree with all your statements. Today he opened up quite a bit over email.. I feel he reveals more and more about what he's going through as time moves on. And today he mentioned he was getting tired of feeling sorry for himself. I thought this was a small positive step in the lead up to the fight that he will not let this disease define him. I reassured him it is ok and perfectly natural to feel sorry for yourself when life throws you these curve balls, but also the fact that it's instinctually human to eventually come out of it - as jimmylegs above mentioned - and start to feel good again and appreciate what's right in your life as opposed to the negatives.

I have dealt with a mother with cancer and all types of adversity in my younger years, so I have an understanding of processes of greif and the time it takes to reevaluate life.

I have also told him its not a death sentence. I know of only one women with MS through aquaintences who's had it for 40 years. She's loving life, has written many travel books and hasn't let it define her whatsoever. Rarely anyone knows she's even got it. But it's hard to try and tell him the positives right now when he's still processing it all.

I think breaking up for now has taken the pressure off him feeling like he can't make me happy right now cus he's so me, I'm the most laid back loving person so I don't understand why I'm more of a burden than a place of comfort and support. However, our communication today was the best it's been in a while. He's still definitely wanting me in his life, so this is a good thing. We'll be catching up soon.

Happy to hear anymore stories if anyone would like to contribute. It does really give me hope he will be ok and allow us to have a life together again.
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