Relationship issues...

[JI Jo]

Hello All,

Is it the same with any of you where you're left feeling guilty for being sick? My husband picked up our son from school last week, I was at home relaxing after my physiotherapy. I was feeling drained and a little frustrated, but otherwise okay. By the time he came home and I played with my son for about half an hour, I passed out on the couch! I was out for about 3 hours....I have no idea when I started feeling tired or when I fell asleep but sleep I did.

I woke up exhausted with my arms sore and heavy and legs sore too. I felt as if  I hadn't slept in days but couldn't explain it. I stumbled into the kitchen and sat on the floor as I was dizzy now too. He barely looked at me and only asked if since I'd slept for three hours why I looked like that. I didn't even know what to say.

He's been very supportive and does a lot around the house and with the baby to ease up my general responsibilities but how do you even begin to explain (without sounding like you're whining) that you don't know when you'll feel better and just because you slept doesn't mean you're not worn out and exhausted. I end up feeling guilty like I'm not doing anything, not helping or contributing. And when I feel like I can't even change a diaper my hands are so weak in so much pain, I'm afraid to say anything or I get that look that says I'm just being dramatic.

Has anyone else had to jump this hurdle? How do you deal and bring across to them that you're not trying to be a whiny b*tch??!

All that happens now is that when something is really wrong I'm afraid to say anything and I usually don't. I know I need the support and there are days I just sit and cry I feel so helpless but how can I get him to understand when he can't feel it? It's not like I have a broken arm that he can see...to him I still look like I always did and that just makes it worse.

Any advice?

Jolene

[Quixotic1]

I think you would benefit from reading one of our longer threads.  It was posted by Carol, "grannyhotwheels", on 9/29.  It's called "Adult Subject/could be embarassing".  Right now, if you have the forum showing threads by "last post", that thread is on page #5.  If you really want to know what people are going through please read it.  Quix

[Quixotic1]

Hi, You and I have been participating in the same threads, but I think I was out of commission when you joined and I haven't welcomed you.  So Welcome!  I went back and read all of the posts I could find for you.  What I understand is that you live in the Cayman Islands.  You've had some visual stuff, pain in your hands and weakness (where?) plus fatigue you can't overcome.  And you have a little 9-10 month old.  You mentioned your MRI was positive, but nonspecific.  Is there any way you could get us the report?

And, there is not a neuro close by.  He is unwilling to make a diagnosis without a more classic presentation...another attack.  Is that right?

Have you had the spine MRI and a spinal tap?

Would you be willing to post your "Timeline" so we can see what you need - if anything - to clinch the diagnosis?

The fatigue in MS (and in it's mimics, including CFIDS and Fibro) is insurmountable.  If you had just had a workout in physio, then, a 3 hour nap is but a brief sleep to catch up.  Often with MS, the entire day after physio is lost to exhaustion.

Today I will do a post on Fatigue in MS, and if I can on The emotional Face of MS.  I'll also give you some links to discussions of the fatigue and how hard it is for family and friends to understand, because "you look so good!"

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_brochures_but_you_look

Carol and Moki are right.  You husband is in a turmoil of hurting for you, not understanding the depth of the fatigue - which is not tiredness, resentful of a role he never expected, grieving for the you that seems gone, grieving for the future he no longer can "depend on," and resentful and guilty cause he can't fix it.  You are going through a similar set of things.  It sounds like you pretty much know deep down that you have MS.

I hope you tell us your more complete story.  You've been very involved in the forum and we'd like to be able to reciprocate.  I am dying to know what your MRI showed.  Did you also get  the spine imaged?

Quix

[JI Jo]

Ladies,

You've brought me to tears. Thank you, thank you thank you for your kind words and support. I don't know any of you and have only been here a few weeks but you all truly make me feel like family.

I guess I can understand how it is hard for our men to see us in pain and not be able to fix it but maybe it's the estrogen in me that cannot understand how being gruff and hostile makes it any easier. I suppose there needs to be more communication and I have thought about counselling but being that my husband is Jamaican (I am also), I doubt that will happen. Caribbean men are very headstrong and don't generally like to hear from someone they don't know what they need to do or should not do or talk about their emotions. Maybe I can get his Mother  to talk to him *smile*

It's such a relief to know that I am not going through this alone and that there are people who do understand what they cannot see. Thank you, thank you....from the bottom of my heart.

Jo

[grannyhotwheels]

Almost every married person in our family face these same problems.  We all here what your saying.  I'm still asking why can't he understand, and what do I have to do to make him understand.

The last time I spoke about marital issues here pretty much everyone recommended counseling.  There was no way my preacher husband would go for that but I did talk to a pastor friend of ours.  It really did'nt solve anything but I felt a lot better afterwards.

Just this morning my husband was complaining about having so much to do and he told his business partner that as soon as he took care of everyone Else's needs that he would be in to the office.  I told him that I was sorry that I was such an inconvenience to him and if I could drive I would take myself to the doctors office but I can't and he is just going to have to deal with it.  Of course that made him mad and he never said another word to me until we got back home.  Then all he said was I'll see you later.

The pastor that I spoke with told me that he is hurting because he can't take care of me he wants to fix the problem because he has always been able to in the past.  He said that he doesn't mean to be hateful but he is a little resentful but not at me at God.  It's easier for him to take it out on me than it is God.  He wants me to be the wife he married and can't yet cope with the fact that she is gone.  He said I'll just have to give him time.

I am trying to do that but it's hard when I get those looks or those hateful remarks.  Sometimes I will purposely leave a post like this up on the screen so that he sees it.  I got a big apology the last time I did that.  But as you can see it only lasted about a week.  I guess I'll have to leave this one up for him.lol

I'll be praying,
Carol

[mokibear]

You brought tears to my eyes and yes I'm in that spot too. Guilt seems to be part and parcel of us not having control anymore in out lives. I often find myself feeling guilty for not being able to do the things I once did. The fatigue is the worst because it is so hard to explain to someone how it feels and like you said they can't see it. I'm so sorry you are having a rough time right now. I did find that letting my hubby read some of the threads in here helped him to understand some of my symptoms that are not visible. Have you thought of counseling as well. This is a hard battle for both you and your family but there is help out there. I too am trying to work out all of this and have cried and felt as helpless as you. You are not alone. Keep talking on here as well as there are some really fantastic people with tremendous advice. Have faith that it will work out. As my hubby explained to me, it is hard for a male to watch their loved one suffer and not be able to do anything about it. There are also times that it is hard for him to understand the fatigue and that I can still be tired after sleeping so long. You need to talk this out with him and if you find that you can't do it alone, find someone to help you. This needs to be addressed.
My prayers are with you
Moki