How do you know?

[Kkathleen]

I am here again telling you my story...

How do you know if you are treated properly? I second guess myself a lot...

[Eva1981]

Do you mean as far as medically or as far as relationships?

Medically I don't know a definite answer. We are all so different. I would say the key is how you feel.

As far as relationships go,it's easier for me to explain. Someone who treats you right will support you no matter what you are going through. They take the time to try to comfort you even if it's something that you can't fix. They go out of their way to show you that you are important to them. If you find yourself feeling alone even in their presence, if you find yourself crying and they don't try to console you,if you crave the way you used to feel,if you need something emotionally that just isn't there,there's a problem. If you find yourself being the one to make all the sacrifices while your significant other enjoys all the benefit, if you aren't happy anymore and that doesn't matter to them,if you can't talk openly about your problems there's problems. If you try to bring the problems up and they aren't willing to discuss them,it's obviously over.

[Kkathleen in reply to Eva1981]

Realationship/marriage

[Kkathleen in reply to Eva1981]

i am sad. Very sad . This is my situation...I won't get everything.

First, I have been married for 17 years. I was diagnosed a few years after we got married. We were always(I think) the best of friends and he was always pretty good to me regarding my ms until I went down hill within the last year.

I get confused because I feel a certain way, say something to him and it gets turned all around so I doubt myself.

I am pretty much angry or sad all of the time. He says I am not putting in any effort into our relationship, but I told him my resentment towards him runs so deep(from being told no for months).

My house needs renovations so I can actually do things, we need a handicap accessible van and I need home health care. He has said no to all of it. He says we can't afford it. He is an attorney for a school district and I have said a couple of things we can stop in order for us to have some extra money. so I sit in a chair or lay on the floor and listen to CNN all day(I love politics and learning about it) and coloring in adult coloring books... I used to be an elementary school teacher.

I have no desire to try... I want to get my own condo, make suitable renovations and learn how to live again.

We, also, have an 11 year old daughter. I know what I am doing to her and I have to fix it...

[Kkathleen in reply to Eva1981]

I have read your response many times... I have no idea that there are actually people like you have described out there in the world with the exception of parents, brothers and sisters...

Much of the time, I get sad because I wonder how my life got to be this way. MS has taken so much from me and now it has taken my marriage..

I hope someday, I am happy and have a daughter who sees me as her role model...

[WAshingtongirl]

KKathleen, my heart breaks for you and your family. Have you talked to your doctor about your depression? Has your husband accompanied you to your neuro visits to where your doctor can tell him what your needs are? And what about marriage counseling? I'm not a professional, but it sounds as though both your MS progression this past year and marriage issues are causing your sadness. In my experience, depression and MS fatigue can cause you to be short, say things you shouldn't, and sometimes even change your perception or outlook on things. I hope you are able to work things out for yourself and your family. Keeping you in 🙏

[Kkathleen in reply to WAshingtongirl]

We did marriage counseling. My needs were discussed there. We stopped going.

But I continue to see her(by myself). She does it by skyping with me and I have a psychiatrist

[Jesmcd2 CommunityAmbassador]

Kkathleen lm so sorry your going through this. And l dont think WAshingtongirl couldn't have said it any better. You also have to remember that stress isn't good for any of us. You need to do what's best for you and your daughter.

I also understand about words getting twisted up and the doubt. When that happens to me l take a min to step out of the picture and come back to the conversation and restate my case. It really does help. But then again lm not married, been there done that twice. Been with my guy for 4 yrs now tho.

Hang in there, and know we are always here for you!

[Kkathleen in reply to Jesmcd2]

Thank you so much. I can't tell you how supported I feel from all of you which feels so good.

[Kkathleen]

I feel that every couple of weeks, I lose another function. I think stress has caused a lot of my physical issues...

[Jesmcd2 CommunityAmbassador in reply to Kkathleen]

What is your dr telling you?

[Kkathleen in reply to Jesmcd2]

My psychiatrist?

[Jesmcd2 CommunityAmbassador in reply to Kkathleen]

And your nero about your stress and symptoms

[Kkathleen in reply to Jesmcd2]

My neurologist...stress and sadness are awful for me. I am on anti depressants and he makes sure I am in therapy.

Psychiatrist who is actually a neuropychiatrist and worked when he was just a neurologist, people with ms...he has tweeked my antidepressants but has also really focused on....that when I see that I can still have a life, I will move towards accepting this disease. He talks to me about the things I deserve to have to allow me to live not just exist.. Home health, modifications in the home a vehicle...

[greaterexp]

It's so difficult to feel unsupported, and I know the stress of an unhappy marriage can be so very hard to live with.

If I may be so bold, I would suggest not throwing in the towel until you have exhausted every possible solution. I know depression can color everything in our lives, so it may be a good thing to make sure the depression isn't running a good deal of your life. Making major decisions will be easier and we can be wiser when we are thinking clearly, but MS fog and depression can affect that.

I do hope your therapist does more than just listen, but understands and equips you with tools that are truly helpful. No one can do the work for you, but we need the right tools to help us effect real change.

I do wonder if there may be some free services available. Perhaps MSAA and other groups could point you in the right directions.

I'm so glad you are finding support here. Though no one can make decisions for us, having others' points of views and ideas can be so helpful.

I sure wish you well and pray that you feel less stressed and far more peaceful soon.

[Lindy530611]

Kkathleen I really feel for you and empathize deeply with your feeling stuck because house is not adapted to your MS needs. I had similar problems in my marriage and it didn't work out. In hindsight I wish I had been more direct with my husband about just needing his support and discussing what I meant by it and asked him what he thinks it is. I am a planner and my husband was not; he left that to me; I was pushing for planning and I see it made feel pushed to plan before I've needed to act. As you know MS is unpredictable so it merits clear discussion about how to plan budget etc but it also includes for Now so understanding and support means ensuring as much independence for you that you can have now and for future. I didn't approach it that way.

so maybe that kind of discussion with your husband will get to open and option based discussion. I am a lawyer so that approach should be a familiar discussion approach he is comfortable with.

[Kkathleen in reply to Lindy530611]

Thank you for responding. The thing that has helped in causing my resentment is that I have been very direct with him over and over. I have told him what my psychiatrist has said and our marriage counselor has talked about this with us. She encouraged us to see a financial planner to see where we could possibly stop spending and use it for my ms. None of those things made an impression on him and I am not being overly emotional...

[Lindy530611 in reply to Kkathleen]

Kathleen you sound like you are very grounded and I wish you well but know I am one who is on this ms journey so we here are a soft place to land if only for you to vent.

[Kkathleen in reply to Lindy530611]

Thank you for being so kind...

[AngieRowe]

What about using your insurance to have some modifications made? Medical equipment that may help or services that you qualify for?

[AngieRowe]

Kathleen, I do understand when a husband doesn't get it. I feel myself getting worse each day. I know modifications are in my near future.

[Me63]

Hello Kathleen, I just read all of posts & the response that went w/it.....I have never been married, but I do have my family who don't understand & seem to not even try. I'm so embarrassed by my "word finding"/forgetting what I was going to say/saying things that make no sense etc. That I isolate myself, which I know is not a good thing to do, but I get so overwhelmed that I don't know see what it is I need to concentrate on so I can rejoin "life" again. But from what I've read I think we'er at the right place. I hope the advice that was given has helped, even if it was just a little,'cause even just a little goes a long way. I'm here if U to vent.

[Lindy530611]

I know I did as much as I could and he just didn't want to be there for me and that makes me sad I just wish I put more clarity about continuing to have quality of life for my independence with his help and support directly on the table. I might understood we weren't getting anywhere sooner.

[dr92636]

Kathleen, I'm so sorry for what you are going through. It sounds to me

that your husband is refusing to face facts. Maybe the whole thing is

he feels overwhelmed with all of this. Try to sit and talk to him about

it and if he refuses , ask him what you need to do to get him in sync

with what and how you feel. This stress will drag you down quickly

and till you get this straightened out you will feel poorly. Don't give

up. He has to understand how you feel and co-operate with you or

it just won't work. Take care

[Kkathleen]

I feel that every time all of you give me good advice, I have something negative to say.

He is overwhelmed and I fully understand why. He is doing his job which doesn't even come close to ending at 5. He is supposed to be taking care of the cleaning and fixing of our house which doesn't happen. Things need to get fixed and our house should be kept relatively ckean. Just last night, I had to say nicely that our daughter doesn't need to love in n unclean house. We wonder why she. Really could care less about picking up after herself. This could be helped a bit if we could have someone come and clean our house occasionally. He won't hear of it.

And then there is me. And I bring about si many problems for him

I have sat down with him so many time over the years. I have never expected that I get everything, but I deserve to feel loved and taken care of. I just wish we could have worked as a team to make our family work ....

[Eva1981 in reply to Kkathleen]

I am so sorry that you're in such a position. Sometimes it helps to step back,take a deep breath and just let go.

I used to keep my house white glove test clean. Now,it's livable. I learned to reevaluate my priorities. Perhaps, instead of a whole laundry list of things that you want your husband to do,you could try picking one thing at a time to work towards. Perhaps by breaking things down into smaller goals instead of tackling it all at once,it would be less overwhelming for both you and your husband.

Also, looking for alternative solutions to some problems might help. Check and see if your insurance will cover modifications and equipment. Look for grants that help pay for modifications and vehicles. You mentioned an 11 year old,perhaps she could help more with cleaning duties.

If your husband isn't open to any of those kind of solutions, it may be time to end things with him.

My first marriage fell apart before I was aware that ms was the cause of some of my issues. My fiancé and I have been together 3 years, living together. He understands me better than I do. He is an amputee and his first marriage was amputated with his left leg. His ex couldn't handle the necessary modifications in lifestyle and physical limitations. Sometimes people just end up incompatible.