New to all of this, seeking advice

[windycitykid]

Hi All,

This seems to have turned into a rant followed by a request for advice. My apologies for ranting in my first post. That said, wow was it cathartic to write this all out.

I have spent the last few days lurking here on the forums reading stories from so many other carepartners and am happy to have found such a great resource.

My wife was diagnosed 6 weeks ago - just 2 weeks before our wedding day. It has been quite the roller coaster in dealing with the emotions from the DX immediately followed by the wedding. We were back at the neuro a few days after the ceremony to start treatment, so that 'honeymoon period' never really had a chance to take hold.

I have found myself struggling as of late due to the toll the DX has already taken on our relationship. The symptoms from the initial exaserbation have largely subsided, but the emotional toll has not eased.

Over the past few weeks my wife has become much more withdrawn and it kills me that I can't help her. She spends more time in bed due to the fatigue, does not want to share or talk about how she is doing emotionally, and has pulled back significantly with regards to intimacy.

I have been in the corner with her since this all started 6 weeks ago. I spent all 5 days in the hospital with her when we received the initial diagnosis, even sleeping in the room when she asked me to stay. I have been to each and every neuro appointment and have been active with the doctors (at her request) in asking questions. She leaned on me when evaluating treatment options and we had great discussions about which drug we felt the most comfortable with.

But now she is withdrawn and I don't know what to do.

She is my girl. My best friend. My wife. And I miss her.

It kills me that she doesn't want to talk about how she's coping any more. That she's not interested in physical intimacy. That regardless of how hard I try to be patient, understanding, and supportive, she continues to pull away. It's as if she's a different person as of late.

Surely I'm not the first spouse to go through this. My question to others is how did you cope? Does it get better? How do you support someone when they pull away?

I'm distraught that I've seemingly lost the woman I love and am so very hopeful that others who have been there have some helpful input.

[Queen Lavee]

I do not have any great words of wisdom seeing as I'm new 8/2013 to this. After reading your post I feel compelled to respond.

I am the independent extreme type and now at 22 years of marriage had to lean on my husband, he was there the Rock that I didn't even know I had.

This is all a really big pill to swallow, being newly married she may not feel like its secure due to this diagnosis. Not knowing what's in store for you is rough.

Try without pressure to talk and spend time with her, try to be close to give her a secure feeling. Hug long and cuddle.

Being newly married would have surly been difficult time for me to share this.

Coming to this board and reading the stories of broken marriage/relationships was so very depressing but a reality check as well. Be grateful for those in your life.

My thoughts will fall on you often. Good luck. Be blessed.

[windycitykid]

Thank you for the thoughtful reply. I am happy to hear your husband has been the rock you need. Here's hoping my wife will say the same about me some day.

She is the fiercely independent type as well. I think a large part of my frustration is trying to find that right balance of being there for support and comfort while also giving her the personal space she needs to cope with this in her own way.

There have been times where she asked me to back off and give her time and space to be with her thoughts. I've gladly honored her request while remaining close and making sure she knows she is loved and supported. The result of which - as happened this week - is her feeling I simply don't care about what she is going through. It absolutely crushed me to hear she felt that way.

We all have different wants and needs when it comes to support during a bad time. I understand nobody here can answer what my wife wants. Heck, I have been in love with her for 5 years and I couldn't answer that! Still, the goalposts seem to be constantly moving with regards to the support she wants or needs. I am hopeful others have been in these shoes. This is weighing heavily on our relationship and I feel like I should be doing something differently.

[SNOOPY]

Hello windycitykid and welcome to MSWorld.

What a difficult way to start out your new life together I am very sorry.

There can be a host of emotions to deal with after receiving a diagnosis of MS. The person with MS goes through a grieving process, much in the same way as what one goes through after the death of a loved one.

There are 5 stages of grief:
http://psychcentral.com/lib/the-5-st...loss-and-grief

If I have to make a guess; your wife is feeling quite overwhelmed (as I am sure you are). Some people disengage or turn their feelings/thoughts away from those close to them.

It might be a good idea for your wife and you to speak with a Psychotherapist who has experience dealing with patients with chronic health issues.

Your wife might benefit from an antidepressant. Some of the treatments for MS can cause depression (it is a listed side effect ) but depression can sometimes be situational (such as getting a diagnosis of MS).

There are also different medications that can help with some symptoms such as the fatigue your wife appears to be experiencing. Please ask her to share how she is feeling with her Doctor.

A relationship can survive even under the difficult situation you are both experiencing.

Your wife has the diagnosis and is physically living with the disease. You are living with this disease because the person you love (your wife) has it and you are seeing what she is going through and emotionally it is affecting you.

You seem like such a caring husband

Let me share my story with you, it may or may not help.

I met my husband at the age of 18, we were married when I was 20, I was diagnosed with MS at the age of 24. We did not have any children but went on to have 2 who are now close to being 22 and 24 years old.

My husband and I have been married for 32 years.

[AlaskaAnn]

Learn.......as much as you can and never stop...

That is what I suggest. Your wife sounds just like me when I was told except I had already been married 10 years and had three small kids depending on me. All that on top of a military wife newly diagnosed with ms. In my world (my head) no one understood. How could they? Unfortunately my disease didn't work well for my husband's career so the marriage didn't last. But it was ok because I realized that one of the things my ex didn't understand was the "I feel good yes let's do that" to the "damn it my leg won't move I can't go" days. Now I didn't have to worry about him too. I also could go climb a mountain if I wanted to and no one could tell me "no...you have ms. Something could happen." Once again I didn't have to worry about him.

I eventually met a single father and when I thought we were getting to close I tried to break it off with him. He asked why and I told him I had MS and did not want to have to deal with someone else not understanding my issues. He laughed...and said "so, you have to put up with me going bald, I am sure I always love you no matter what you may pick up. You have MS from what I see it doesn't have you." We have now been married 16 years. He does what ever I need when I have "onsets (this is how the military doctors referred to my attacks). He takes me to my appointments but never assumes I want him to come into the room with me. Sometimes I do and sometimes I don't. He waits for my directive or asks me. He fills our kitchen with everything I ever asked for before, but still asks me what I need....and he gets exactly what I want. And when I show any sign of recovery from the attack, he is right with me planning our next mountain to climb or river to fish.

This went a lot longer then I wanted. My point is I think you are on the right track. Just don't stop learning and remember things are always changing. Seems fast in the world of MS.

By the way, no one knows I have MS unless I chose to let them into my world. Everybody knows my husband is bald. Poor guy.

[Cat Mom]

1st) Bless your heart for wanting to help her so badly that you came here and asked... that's HUGE!!!

2nd) Congrats on getting married.

Just from personal experience (I'm the MSer), your wife may be pulling away so as not to worry you or push you away by leaning on you too much. Especially since you are newly wed, she probably desperately wants to be your wife, not your sick wife.

Even though you want her to lean on you, us women are some stubborn at times to be as independent as possible. We have to "get to know" this unwanted, unwelcome intruder, before introducing it to our families and this can take a short time or years. Sometimes simply talking about it makes it seem more real.

I'm not sure about the physical intimacy but my best guess (other than being painful) would be that right now she feels like her body is broken, AND it has betrayed her. It's REALLY hard to feel anything close to sexy, especially at first. I do hope this resolves itself, for both of you.

I hope you find comfort here and get the perspective you need. You sound like a caring husband, I think you and your wife stand an excellent chance of fighting this together. Good luck, please keep us posted.

Jen

[Hubby123]

How I feel...

I am new to this forum and I did not know whether to start a new thread or to reply to an existing one, but eventually decided to hust psot something. If my post should be placed somewhere else, feel free to move it.

About myself: I am 55 years of age, living in a medium sized city in South Africa – close to the Kruger National Park, married for 35 years. Both our kids have left the house and I am a proud grandfather of three. I am a diabetic, but have my sugar levels 100% under control. I am blessed with good health and do not feel like 55 at all. My passion is motorcycle riding.

My wife (56) was diagnosed with MS in 2010. I did not have a clue what MS was – except that someone told me it was a death sentence. My wife was very emotional and cried all the way home that day.

In the beginning she was OK, but she slowly deteriorated since then. First thing was that she could not feel the pedals in her car and could therefore not drive it anymore, so I sold her car, bought her a small automatic car and fitted hand controls to it so she can drive around again. Then walking and standing became an issue. So we got a walker. Next thing was climbing steps – she could not get into our house from the garage anymore. So I installed a lift and a platform on which she can walk on to raise herself to the floor lever of the house. When she suffered too much walking more than a few steps with the walker, I imported a mobility scooter form the US which works very well. She uses it when she goes shopping etc.

She still goes to work because we both agreed that she should not be isolated from the rest of the world and stay at home day in and day out. Luckily we work for the same company and I can help her to get in and out of the office. She can walk from the car to the office with the walker – or on bad days use the scooter - and then she works from behind her desk most of the day except for visiting the loo which is right next to her office.

Unfortunately there is a lot of things that she cannot do any more but I do everything that I can to help her to cope, such as making the bed, cook, do the dishes etc when the domestic is not in over weekends and in the evenings. I do not mind to help het bath, dress and will massage her legs to help with the pain caused by muscle spasms etc. I do it all because I have promised 35 years ago that I will do that.

Why am I posting here: I think the main reason is to talk to someone about how I feel. Somebody who does not know me – or her. I do not really want advice or solutions, maybe just a sympathetic ear. I just want to get these feelings off my chest – and put it into words - hopefully it will make me feel better somehow.

The problem is that I feel very guilty speaking about the things that bothers me – and I scold myself for feeling o so sorry for myself whilst my wife is the one that suffers – but here goes..

I hate what is happening to me – or us. I do not know whether I still love my wife or not or whether she is still in love with me. We do not even touch each other anymore, because touching her hurts her. I cannot hold her or hug her or make love to her. We sleep in the same bed but never hold each other because her body aches. No hugs, no kisses or any intimacy for two or three years now. Nothing. I could just as well live with my mother.

I used to hold her hand when we walked in town, or when we went to church on Sundays - now she holds the walker and do not go to church anymore because she says it is too difficult for her and the church is too cold inside.

I so miss having a woman in my arms and in my life. Someone that I can love and hold tight and dance with and walk on the beach with or just lie behind her back in the winter cold or simply hold hands….….

It feels as if I am caught in this prison. I cannot go anywhere on my own for the fear that she will fall down and then there would be no one to help her, something which happened in the past a few times. She had to lie on the floor until I got home, because she could not get up or reach the phone.

I for that reason never go anywhere on my own and we also think twice before going on a vacation because it is so difficult to load everything that she requires into a car and drive somewhere and to fly is a mission and to find places with disabled friendly rooms is also a problem...etc. Saddest thing is that I almost never ride my bike anymore – and that was my only physiologist!

I feel like my life is slowly passing me by and that there is nothing that I can do about it. And she senses this, even though I will never tell it to her, because we had a little disagreement this weekend about something that I had done – and during the argument she tried to force me to admit that she is just a burden to me and that I wish that I could leave her.

I was so shocked, because I never said something like that to anyone…but in a sense what she says is true. I loved her very much all these years, but the women that I used to love is no more..

Well, there it is. I have said it. Now crucify me for being selfish or whatever you would like to do. At least I got if off my chest. Thanks for allowing me to do so.

[LadyMS]

Amazing caregivers

Wow, windycitykid your post made me break into tears. And Hubby it is amazing to see all of the things you have done for your wife over the years. Being someone with MS, I know how hard it can be for the caregiver as I have seen what it has done to my relationship.

When I was first diagnosed, I went through a lot of the stages of grief. When anger struck, my significant other bought me a sledgehammer and let me go crazy with it on an old computer that was meant for the trash. I can't begin to describe how incredible it is to have someone support you in those hard times. I just really felt like someone else was in my corner and was going to help me get through what seems impossible.

Having it for two years now, not much has changed. There are still times when I get so overwhelmed with trying to work and pretend to be a normal citizen, but I'll never feel like one again. MS has a way of changing the way you feel about yourself and that certainly can affect intimacy. You don't feel like a sexy woman anymore, but like a sick patient or an ugly monster. Since being diagnosed, the only time I remember feeling sexy was when my man bent down and told me my hair smelled great. How sad is that? There just aren't many opportunities for feeling sexy when most of your time is spent on the phone with doctors or dealing with symptoms. The littlest compliments can really boost your confidence.

I was not like windycity's wife because I shared too often and relied too heavily on my significant other and the stress became too much for him. My biggest piece of advice would be to always make sure you are taking care of you, as well as your wife with MS. Don't let it get to a point where you want her to leave because you can't take the pressure anymore. That's what is going on with me right now.

He would just run himself around like crazy trying to do too much and wouldn't listen when I would ask him to relax. I could see the stress building but there seemed like there was nothing I could do.

And Hubby, don't feel bad about the way you feel. I'm sure she feels the same way. I'm sure she questions whether you stay because you feel guilty or worry what others would think if you left. If I could leave myself and this disease behind, I would. It's just not an option for me.

And the worst part about this disease is knowing that it will get worse. It's terrifying. Just know that what you are doing makes such a difference in an MSers life. We hate to ask for help, as much as we need it. I just really hope that venting helped you a little. Having other support is so crucial for a caregiver.

[frosty123]

Heartbreaking

Is what your stories are...no judgement at all, just very sad. I truly cannot bear the thought of not being able/wanting to cuddle with my husband....or hold his hand.

Certainly there must be some type of pain management available to your wife Hubby123?

I am very sorry for your losses.

[Special Kay]

windycitykid, your wife is grieving. It's a sad and confusing way to begin a marriage.

Please know that the first months and year after diagnosis are the hardest. It's like she was hit by a bus and has to figure out how to go on. What is, right now, a fresh trauma to your wife will be something that she will find ways to incorporate into her (and your) day-to-day life.

You have gotten good advice and deserving praise here for your attitude. I would say: just hold her. It might take awhile for her to come out of the fog of this trauma. But I'd bet she needs to be comforted as she grieves -- without sexual intention, just as you would comfort a child. And if she won't let you hold her physically, then hold her in your heart and hold her precious spirit with your spirit. Be near as her safety net.

Just continue to be there and comfort her. In addition to grieving for what she thought her life would be like, she may have feelings of guilt for what this means to you.

MS can cause a huge identity crisis/shift, especially, I think for someone just starting out a new life.