jfgaudet 24/05/17
Last reply 11 months ago
Any Partners of MSers on Here?

Hi everyone,

My fiance was diagnosed with RRMS at 23. She’s now 26. I’m 27.

I’m having a really hard time dealing with everything that comes along with the diagnosis – lately it’s mostly been anger. I see an elderly couple walking hand in hand and want to run one of them over. I see someone in their 30s jogging and I want to throw a brick at them because it’s possible my fiance won’t be that mobile by then. I see friends going on hikes and buying homes with stairs and planning vacations in warm places (I live in Canada) and I can’t help but be angry with them. I know that MS doesn’t mean the world has to stop, and I know it doesn’t mean that we won’t be able to have kids/travel/live our lives, but I’m still mourning the life I thought we’d have and how different it’s already become in our mid-twenties. If it impacts our lives this much already, how bad will it be in ten years? 20?

My friends don’t understand, and keep saying generic things like “it will all work out” or “no sense worrying about what you can’t fix”. I know they mean well but that doesn’t stop me from having nightmares where I’m 30 and trying to deal with raising a baby (planned, we don’t have any yet) and taking care of a partner who sometimes can’t get out of bed even after 12 hours of rest. It just seems so hard. I know there are other ways to contribute to raising kids and a household, but I’m feeling overwhelmed by the prospect of potentially getting a stroller and a wheelchair ready, potentially bathing every member of my family, potentially being the sole income earner, etc.

I know I should probably see a professional to address the grief and anger, but unfortunately right now all our counseling benefits are being allocated to my fiance to deal with her anxiety and depression associated with MS.

Is there anyone who can relate?

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potter
12 months ago

I am the one who has MS but I have similar feelings. I was diagnosed when I was 55 but had symptoms for 20 years. When I found out I felt like I had ruined my husbands retirement, he had been looking forward to it. Most of his friends are retired now, he is still working so I can have medication. I am in the US and we have to pay for our insurance (health care) and the Tecfidera I take is 100,000 a year here. So I need some pretty good insurance. We have adjusted, we take spring vacations instead of summer that are mostly driving through scenic areas, just got back from the Grand Canyon. Mt. Rushmore last year and Yellowstone next year, he loves to drive so it works for both of us. I told him that I was sorry for ruining his retirement years. He said I had nothing to be sorry for it as easily could have happened to him. He reminded me when we got married we thought of it as a partnership. We would have our ups and downs but we would stick together. We do a lot more cuddling and watching TV together now. That is really helping to relieve stress and anxiety and is bringing us closer. The last tip I have is that you should go out with your friends now and then, this will relieve your stress. I push my husband to do this I can tell when the stress is building up inside. I have even called one of his friends and told them they need to go out and to give my husband a call. Potter


edmontonalberta
12 months ago

Jenn – not sure if this is what you want to hear – your thoughts & feelings are 100% normal…

My first wife was diagnosed with Scleroderma at 28; funeral service at 31… I too was sad watching elderly couples hold hands while walking down the street; so many things on a daily basis had my emotions ranging from anger to tears. It took five years after she was gone to piece my life back together – almost 25 years later, my life is different than I planned yet still good. The world lost a great one when Donna died.

Should I have avoided the 10 years of absolute happiness with Donna to ensure my life did not crumble into pain, emptiness & inches away from suicide time & time again? Not a hope in he** – I had a Superstar beside me; nobody could have done better!

You need to ask yourself a few things. The first is whether your partner is handling this M.S. challenge properly. If she is, keep her. Donna would send me out of the house every Friday evening so I would be with my friends & life would be sort of normal; this also allowed her to have time alone to cry if need be. This time apart was non-negotiable to her; looking back, it was a very wise decision.

Regarding professional help – stay away, stay very, very far away. Donna was a Chartered Psychologist. She worked with them – her brother-in-law is one. Without getting into specifics, not one was helpful when she was sick; I almost hit one at her funeral service for his callous remark. This is your challenge; this is your pain. Only you are able to work through the emotions; hopefully with your partner at your side.

Good luck dealing with this. And remember – Life is a journey & we all know the destination. M.S. is just a speed bump along the drive…


jfgaudet
12 months ago

Hi guys,

Thank you for your replies. Edmontonalberta, I’m sorry to hear about the loss of your first wife – I can’t imagine what that was like.

Both of you have mentioned the importance of taking some personal time apart where things are “normal” – I need to work on that more. I still feel guilty if I want to go on a hike / rock climbing / to the gym and she’s feeling too sick to go – so far I’ve just stayed at home as well. Maybe I need to start going.

We’ve been together 5 years (2 years before her diagnosis), and we get married this fall. I’m not going to leave, but sometimes when I think of the future I panic. I know I need to work on the anger, because I’m starting to snap at my friends when they say the wrong things (though I don’t know what the right things would be). And I need to make sure I deal with it before I start to resent my fiance.

I’m not sure if either of us are handling the diagnosis well. I’ve been focusing on dealing with it in terms of getting a good job that had adequate pharmacare (which we have now), trying to get our finances in order so we’re set up for savings in case she can’t work, and recently looking for houses that are fully accessible. With the housing market as it is, we keep getting outbid, and I think my disappointment at losing the houses is also tied up in my frustration at running out of “to do” items that could make coping with the diagnosis easier. Once I run out of things to do, I’ll have to start the emotional work, and I don’t know how to accept that I’ll have to watch her health decline.


stumbler
12 months ago

@jfgaudet , a phrase often used by us MSers is, “Prepare for the worst and hope for the best”. You seem to be stuck on the first phase of that.

Live for the present and let the future look after itself.

No-one is exempt from receiving life-threatening medical news, so we’re all in the same boat. No-one knows what tomorrow will bring.


californiadreamin
12 months ago

@jfgaudet My wife is actually doing pretty well at the moment but the path ahead is uncertain with all of us but more so with MS.

I cant say this will be true long term, but for me an increased sense of empathy happened. I look at my kids and instead of wondering why they are doing X or winning Y like half the kids on facebook, I realize I am blessed two kids that I love and love me. I have friend that was in a horrible car accident. I know of others with serious cancer. All in all at the moment I feel lucky that there are some treatments and options that seem to at least help those with RRMS. This was after some serious grieving of our “planned” rest of our life.

I am hopeful that there are some new drugs in the pipeline and HSCT is an option pontentially as well.

As far as professional help goes, I would recommend seeking whatever counsel you can find (professionals, churches, good friends, family) that you can talk to confidentially. The process of just talking things through is helpful in just getting your own thoughts formulated. Of course caution is always good, but learning how to think through stuff like this is important. It was important for me bceause I already had kids. My feelings were impacting my kids for a while. They were stuffing their feelings and it was showing up in other ways. If you are serious about having kids down the road which you seem to be then finding a way to deal with the anger is important. The one thing I have learned is I cant not be mad/sad/glad about things. Its a real feeling that I have. I can however decide how I want to engage with that feeling.


edmontonalberta
12 months ago

Thank you for getting back to us Jenn. I trust you are speaking from the heart; if so, I see a few problems.

First – why are you feeling guilty? You did not give her M.S. Also, you need to have fun to give you strength not only dealing with this but for any challenge in life you face. If you continue to stay home instead of rock climbing (or whatever), you will end up resenting her – and from what you posted, she has never asked you to stay home 7 nights a week…

Second, you have suffered a major loss; your Plan A future is gone. Grief & mourning is not only allowed but acceptable. As you work through that loss, Plan B will piece itself together. Not tomorrow or this week; might take months or years.

Potter takes spring vacations; I manage my slo-pitch team instead of playing. Presently in the process of selling my two story house so I can find a one level place to live. Sent my wife to Texas last month to visit her brother; she deserved a “treat” for everything she has done for me. Plan B will appear…

Regarding friends who say the wrong things, I can send you a few links to read if you like.

Take care of yourself…


elizabeth_johnson
11 months ago

Hey there,

I know how you feel, well kind of. I got diagnosed with MS, I was 25, and I got the diagnosis the day before I started at Veterinary school.
Everyone around me sort of fell apart, my parents felt useless, because they couldn’t make it go away, and my boyfriend at the time, bless him, he was there through the diagnostic stage, but he couldn’t cope with the potential of disability round the corner (plus vet school was stressy for me)

I ended up having two bad relapses, I became paralysed down one side, I dropped out of my dream university. But I regained my functionality to about 80%, am back at university. However my current boyfriend, he gets frustrated at me, he gets annoyed that I can’t run, and that I don’t walk the way I used to (former model, I used to have swagger, now I just have stagger….)

I don’t blame him, but sometimes I feel I would be better off without the burden of another persons worry and anxiety, I feel so guilty for the burden I have placed on those around me, by having MS.

So it is normal for both parties to feel scared and frustrated, I have learnt not to plan too far into the future, as it makes the stress and anxiety worse.

xx


noelie
11 months ago

@jfgaudet I am the one with MS, and I’ve been trying to get my partner to go out and do things without me, so far i haven’t been very successful. I’ve had to shout and kick him out of the flat, it’s hard on him and me and our daughter. I need the space, i want to be on my own sometimes to rest, to cry, to stop thinking, just to be. I already feel like a massive burden, and don’t need the extra guilt of reducing his life more than necessary.

You both need to look after yourself. If she didn’t have MS, you probably wouldn’t be doing things together all the time, so you should carry on having time for yourself, i think that’s very important, your mental health is very important. It is not selfish to go and do things on your own, if you’re not well, you can’t help her.

Treatments are available, that alongside a healthy lifestyle (diet, especially cutting saturated fat, gentle exercise, no excesses) can improve quality life massively. I don’t know how severe her symptoms are, but try to stay positive as much as possible. Negative thoughts don’t really help moving forward. Don’t know how the health system works where you are either, but if you feel you have trouble dealing with your partner diagnosis, you should be getting help too. Getting the MS diagnosis, you both have to grief the loss of the future as you had imagined it. It takes time, but you’ll find ways to accept and adjust. I’m getting there, slowly (it’s my ms anniversary, i’ve been dx exactly one year ago)

She’s very lucky to have you by her side.

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