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My husband is disabled and now I am too and it is tearing us apart

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    My husband is disabled and now I am too and it is tearing us apart

    My husband and I have been married for almost 2.5 years. He is 27 and I am 26. He was born with spina bifida and is a paraplegic, though still able to walk/drive with the help of a body brace and crutches. I have always been his primary caregiver, as there are some things he cannot do himself.

    I was just diagnosed with MS in June and am not doing well. We are both emotionally drained from fighting because he is having a hard time understanding what it's like for me to have been healthy for 25 years and just now be diagnosed with a chronic disease. He is very strong-willed, believes he can do anything he puts his mind to, does not let his disability put him down or limit him, and always pushes through things no matter how tough. He also psyches himself out during difficult times when he is having health or medical issues and almost lies to himself so he doesn't get depressed about it.

    But all of those things, along with the fact that he's had 27 years to 'accept' his disability, is tearing us apart. He thinks I am just giving up when I can't do something and is constantly saying how I should just 'push through things'. He can't see my everyday symptoms like he did when I had an exacerbation and that makes it even harder.

    All I want is for him to let me go through the process of grieving and healing and adjusting to all of this. I also want him to accept that I am not him and that it's OK for this to be difficult and scary and everything in between right now. I feel so alone. Am I the only one who WAS the caregiver and now NEEDS a caregiver? Am I the only one who has a disabled spouse and am now disabled myself? I definitely feel like it sometimes and I don't know where to turn.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi Kelgon

    Welcome and sorry you have a reason to join us....You're situation is unique. I think we could all get some pointers from your husband on how to 'power through' our problems.

    I believe it will take some couples counseling for him to realize what you're going through. I hope he's willing to receive assistance.

    I hope you find someone with a similar situation. Come back often ...Take care
    Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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      #3
      The emotional conflicts of your relationship need dealt with professionally, asap! there are no shortcuts to mental health.

      Your state of mind can affect your symptoms and could possibly be making your situation physically and mentally worse.

      His disease is stable, yours is not. He doesn't have pain or different symptoms and is very predictable. Your MS is not and he may not be able to deal with that.

      You need your own therapist and so does he! Plus, couples counseling.

      If he is unwilling and it sounds like he is a control type of person, your next problem will be: Should I stay in or out of this relationship?

      Best advice anyone can give you is to work on yourself and hope you have enough self esteem to make the hard decisions you may need to, soon.

      You definitely need time to work through the grief..etc. So sorry of your diagnosis.

      Hopefully, you will get off this emotional roller coaster and get yourself better and on a medication that will make you feel well enough to take care of yourself.

      You should consider getting away for awhile. sounds like you need some 'just me' time, to grieve and reflect.

      Please take care of yourself.
      fed

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        #4
        I'm so sorry. Both conditions are totally different with differents paths. I wish he could see that.

        All I want is for him to let me go through the process of grieving and healing and adjusting to all of this. I also want him to accept that I am not him and that it's OK for this to be difficult and scary and everything in between right now.
        Have you told him this? If so, what was his reaction?

        Have you considered two-fold counselling:

        - individual for you since a chronic illness is hard to deal with on its own
        - couples counselling

        Also, have you contacted the local MS society chapter to see what educational events they have? Maybe even both go into the offices?

        I am sorry things are bad. I went through a rough period with my SO when I first started having symptoms too through a lack of understanding.

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          #5
          I'm so very sorry you guys are dealing with this double whammy.

          I agree with PP that both individual and couples therapy might be in order. I mean, you have to deal with your DX, and he has to deal with both your DX and the loss of his caregiver.

          ((hugs))
          Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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            #6
            I have had a real hard time grieving over my old life. I guess cuz I was so independent and successful and all that has changed over 4 years. I started getting sick when I was 30 and now I'm 34. It's really hard when the disease hits when you are in your prime. It just doesn't seem fair.

            I was just posting an update on a thread I started about wether one disabled person dating another disabled person would work. I tried and learned a lot.

            Here is my advice, I went to a grief counseling group. It's not just for people who have lost loved ones. We grieve over many different things, I have been grieving over my old healthy life and still do. I stopped working 2 years ago, had an awesome career and made very good money. To this day I still get calls from corporations that know my track record and want me to come work for them. They call to see if I've gotten any better. Every time they call I grieve all over again. I miss my job horribly.

            If either of you qualify for in home supportive services try it out. They can come and help prepare meals for the week, come clean and help with random things. That may help you pick up the slack, and even though it seems so small that can really take a toll on relationships.

            This disease really sucks in the way that people can't see how you really feel. I take one trip to the grocery store and sometimes can't even get all my shopping done because I feel like I just did a triathlon. Then my mother gets upset because we can't go anywhere else because I have to get home and sleep/rest.

            If he reads maybe find a book about MS that outlines the symptoms. Google "but you look good" they have a website with good information and even a small book you can order for free even free shipping that is for the people around you that don't see your hidden symptoms. It's a good book. I made my insensitive family members read it lol.

            Those are the few bits of advice I have, I hope it helps. I wish you the best of luck, I know it's hard, you're not alone <hug>

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