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Multiple Sclerosis Community
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Avatar universal

I need encouragement

I have been in 'limbo' for over 2 years now. I live daily  with several symptoms and experience a rush of other symptoms that come with 'flare-ups' and last for months at a time. My symptoms started over 3 years ago and I've been in testing for 2 years.

The most recent flare-up has been one of my worst..on top of my usual symptoms, I have also been experiencing extreme fatigue and excruciating pain throughout. I do what I can on a daily basis for my family. I have a husband and two kids who mean the world to me. However, my husband has just brought to my attention his 'resentment' towards me for not doing more. He says that he understands what I'm going through, but I should be doing more. At the moment I am quickly passing spread thin and trying to figure out a way to function beyond waking up in the morning.  

I understand that his plate is beyond full with enough as it is....and I understand that it is not exactly fair to him that this is happening to his wife. He didn't sign up for this. But neither did I.

I hate not being able to do the things I used to do. The simple daily chores have become too much to handle. He sees me as 'lazy' and I just wish that he truly understood me. I could really use more support, and fewer added expectations.

Can't go on like this much longer.

7 Responses
739070 tn?1338603402
Hang in there. Several of us have been down this road. I sent you a pm regarding the same.

Ren
572651 tn?1530999357
hi Ley,
I don't think we have crossed paths yet - I'm glad to meet you and see you back around here.

If only every spouse/partner could live in our bodies for 24 hours and experience what this feels like it might make a lot more sense.  This is such a crazy disease and the course is so unpredictable even we can't fathom it completely.

Being in limbo is even worse for you - all the symptoms and none of the legitimacy in the eyes of others.  I'm sorry that you are suffering with the unknown and the guilt.  

Life is sure full of "unfair" happenings.  I hope you and your husband can figure out how to get through this one together.

my best to you,
Lulu
620877 tn?1282764097
Hi Ley,

I don't think we've met -- I am in limbo too - I have been dealing with my health issues and testing for 2 years (although I think some of my symptoms started 4 or 5 years ago), and I understand how you are feeling.  I don't have children, but I do have 2 large dogs who require walks, etc. and a full time job, and a house to run....so when I don't feel well, it can seem overwhelming.  I think we all understand how hard it can be.

I can't really offer much in way of advice, as I think my husband gets tired of hearing "I don't feel well" too....and some of my close friends don't/won't talk about it...I guess it makes them uncomfortable?

Anyway, just know that this is a great group of people who are smart, funny and very supportive of each other!  


Hugs,
Chrisy
undx'd
645390 tn?1338555377
Hi there.

Well, I don't have too much advice, since I could have written your post almost the same as I would write mine.

The whole husband issue is hard for me too. He doesn't "get it", although at times he does. When I am just too sick to get around, or he sees me struggling to walk, those are pretty much the only times he "gets it".

When the symptoms are "invisible", he is frustrated. Doesn't understand why I have trouble doing things, when I "just need to get positive and I would then be able to do more things." He is the one that needs the attitude adjustment. (OK, enough about me, as u see this bothers me :)

Someone gave me a good suggestion to bring him to the doctors office with me. I thought that was good advice. I was also told to give him some literature to read, although being in limboland, that might be harder. There are pamphlets on "possible" ms I believe. Look on line at the national MS website. There might be info your husband can read.

I am sorry you are going through this. I want you to know you are not alone, I am in your shoes. Mom with young children, and hubby who doesn't get it. Keep venting here, we our listening,

Michelle
941625 tn?1263581782
I am sorry to hear you are going through this ... I'm in limbo too, so I can understand that.

Just hang in there, and keep communicating with your husband and hopefully he will get it.

In the mean time, there are a lot of people here that can offer support. Everyone here seems pretty wonderful, and we are all here to listen.

Take care!
494672 tn?1254152672
Ley,
You are in good company here!  For us to say we know how you feel is just not a statement - it is the truth!!! (Unfortunatlely).

My husband & I had a similar situation last year & it almost ended us - seriously!  It is so hard for them to understand it all.  He viewed it as me being lazy.  I viewed his lack of interest as very uncaring during a scary time for me when these wierd things were happening to my body.  I had my husband read up on the stuff on this site & I keep a symptom log that he can look at instead of me telling him all the time what is happening with me.

Hang in there & do what works for you guys.  Please feel free to continue venting here - I think it helps.  Take care of you

Janette
Limbolander
Avatar universal
Thank you, everyone, for your kind words. It is REALLY nice to have someone to relate to...even if it is online.

This whole 'him not understanding me' thing is new. He used to be very supportive and understanding. I think that this last flare up was especially hard for him to take a step back and realize what was really happening to me because of the chaos happening in his world simultaneously (work stresses, finances, kids, etc.).

I got him to open up a little more and was surprised to hear him say that he measures my love for him by how clean the house is.../ nice the meals are, etc. I tried not to take this one too personal. Before I became 'sick' I was the ultimate housewife/ superwoman. Hosting parties and events several times a month, SPOTLESSLY cleaning the house daily, meals were on the table when he returned home, educating our children from home, etc. It took me a loooooooooooooooooong time to find peace with letting go of that 'ambition' and 'drive', as my body just simply couldn't keep up.

We did separate a while back for a few months because I could not (physically, emotionally) take the lack of support.

I use to tell him about each ailment, but he would get really distraught and emotional and eventually act annoyed the further time progressed. It was affecting every area of his life. He's asked me to start telling him every symptom again which makes me nervous. I like your idea of showing him a log, Janette. I think I'll try that. At least that way he doesn't have to associate my symptoms with my nagging-wife voice. *chuckle*

Again, everyone....thank you.

~Ley
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