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645390 tn?1338555377

Just a quick "vent" and frustration, Irony contines into my day.

I dont like to come here and vent anymore.  I am really adjusting to the new me, and trying to be more positive these days.  It seems to be working, BUT, today was not good.  New AWFUL symptom has popped out the blue.

For the past couple weeks, I notice in the far distance some weird vision thing.  I even called and old co-worker, who has my old job.  We are in the field of this EXACT thing.  She told me she has been experiencing similar things, so I just chalked it up to maybe getting older, perhaps a new script for my glasses, or who knows, I don't really care.

Today, IT happened.  I must preface this by telling you yesterday I EXHAUSTED myself.  We got a new furnace today, and I spent about 5 hours in the basement yesterday, trying to make a part for the furnace people to get around.  (like the show hoarders, to say the least).  Today was my sons bday, so was also trying to do much for him, to get ready for his special day.

Woke up today, something was not right.  I thought maybe I was getting an ocular migraine, as my vision was "strange".  Had a huge day ahead, doing a concession stand to raise money for Cooperstown for my son to play there this summer.  Soccer, furnace people here, lego contest at the library, shoe shopping for the bday boy, and he showed me yesterday he was walking on concrete (!) the shoe was so worn, the rubber was gone.  Then, to top it off was a bday/Football banquet tonight.

I am telling you this, because maybe stress brought this on?

Well, I quickly realized I was having tremendous double vision  in the distance and right gaze. Nothing in left gaze and nothing @ near.  I was so nauseous, had to pull my car over. (yes, I drove all day, with 1 eye closed, because my husband is a stupid a--.)

Got to the school to releive my husband from concession duty, so he could drive another son to a boy scout "cleaning out the trails" at the woods.  I got there, covering an eye, he wants me to drive the son to boy scouts.  I try to tell him what is going on, he doesnt care.  I do believe he is desensitized from all me needs.  There is always something wroung with me physically, and I am pretty sure he is done trying to be supportive in any way.

I tell him, No, I can not drive.  He took my son, and called me to tell me my back of the van was parked on the sidewalk of the school.  (I told him I am having double vision, he still does not understand or try to understand).

To make a VERY LONG story end, as I am realizing this should be in a journal for me, I have a 6th nerve palsy, in my right eye.  Cant believe this, I need to make an Appt with myself.  This is the EXACT reason patients come to see me.  Lesson learned.  Double vision is incapacitating.

I refused to go to this party tonight, husband very angtry. I am angry too and really our kids are upset we are not getting along.

I had also called the eye doc I work for, because I was panicking terribly, and I just wanted her to reassure me it was a 6th nerve palsy.  Although I new for certain it was, I have been in this field for 20+ years, and am really really good at it. She confirmed it.

She drove to my house tonight, with about 50 fresnel prisms. (what you can put on your glasses to make you double vision go away).  She also caught my husband as he was leaving for the party, and told him firmly, what I was experiencing was real and was making me sick to my stomach.  He gave me a death stare, I dont care....a----.
She examined me at my house, and brought everything. I needed. I am very lucky she is my boss, huh?


That is the end of my story. I am sorry it is so long.  It has taken me WAY too long to write this with one eye.



I am sitting in the dark, going to head off to my bed in the pitch black and call it a day.

Getting tired of keeping up the positive tonight.  

Thanks for listening,

Michelle


18 Responses
1396846 tn?1332459510
Michelle,

You can vent away anytime you like.

I am so sorry you are going through this and your husband is being an [email protected]@. It is bad enough to go through this without not having the support of the one person who is suppose to be there for you.

I am so glad your boss came to you and told your husband that it is serious even though he didn't seem to care. I hope that your eye gets back to normal soon.  

I know you are trying to get on with your life as normally as can, but you need to take care of yourself and try not to overdue it. Sounds to me like you have a very busy life maybe you should try to find a way to make it not so hectic so that you won't be so stressed.


I hope you and your husband start getting along. It has to be too hard for him to act like there is nothing wrong.

BIG HUGS,
Paula
739070 tn?1338603402
{{{Michelle}}}

I am so sorry that your day was awful and that you received zero support from your husband. It's hard enough to be sick and worried about your own health when there's no one there to support you. I am so glad that your doc came to your rescue!!

I don't know why your husband is still in complete denial about your disease. He certainly could use some counseling to help him come to grips with what is real and right in front of him.

Paula is right, hubby needs to do his share of driving and going to scouting events and baseball games and on and on. You seem to be the only one who is the parent these days. I'm sure stress and exhaustion is the cause of your new symptom . So how long will it last? Is it permanent?

{{{Sending you HUGE hugs,}}}}

Ren
572651 tn?1530999357
Michelle, since he is not willing to work through this with you, it is time to put the brakes on.  STOP signing the boys up for things to do.  STOP making yourself ill running them all over.

Think about when you were growing up - did your parents run your tail end all over the place to keep you entertained?  I'm betting not.  We all learned to entertain ourselves and didn't need all the extra stuff to keep us out of trouble and happy,.  It's about time your boys - including the old one- learn that your days of carpooling, chaperoning, homeroom mom duties are all coming to an end.  


I hope your boss/doctor/friend came up with a good combination to help diffuse the vision problem.  You need to be able to see straight, to think straight, to straighten out this chaos in your home, once and for all.  

This denial of your husband has been going on all too long - It saddens me that he still doesn't get "it."

lots of hugs and love sent your way,
L
987762 tn?1331027953
COMMUNITY LEADER
Hey Michelle,

I think every husband, even the good ones have the ability to be an a$$ sometimes, dont know if its just me but my dh is more of an a$$, when (I feel) he's basically pushing me to do something he wants me to do. What I want, need or can do seems to get lost somewhere in his thinking, for eg. I'd not been able or allowed to drive for about 6 months but he needed some papers from the bank, talk about pushy, but i still had to say no, no matter what he came up with to try and make me do it and he was a right royal A$$!

This was when i still couldn't walk, and he was the one that actually generated the ban on me driving. Me not being able to help him out made him angry, and I bore the brunt of his frustration though I still think it was my ill health he was angry at and not me but thats how it came across at the time. He was still mad hours later, walking in the door and still doing a good impersonation of a royal A$$, if i could, I would of told him to 'pull his head in' but I had been having trouble speaking all day, he would of known that if he had actually listened to what or how i was responding to him.

When I finally did say something, It was so blastedly obvious that what he WANTED me to do was not fair or possible, reality hit and all the A$$ hole huffing and puffing evaporated though I was still not impressed it took him so long to hear what i'd been trying to tell him. He's a great husband but when he's being an A$$ i'd sure like to get him to live a day in my shoes, he wouldn't like it thats for sure!

You got to love your boss, talk about going above and beyond!! I do think you might need to set up a time where you sit down together and talk, not heated in the moment but calm reality based and let your feelings out about what this disease puts you through. Talk about how alone you feel when your in trouble and he behaves like your health is an excuse you use to get out of doing things. Maybe he's not aware he's coming across as an inconsiderate A$$.

HUGS..............JJ

PS I have double vision and unilateral nystagmus (sp) did the prisms help?
Avatar universal
I too am very sorry to hear that your husband is being like this. I agree with Lulu. You have to watch out for yourself. I really hope that you get to feeling better soon. Please take it easy for a while.

Hugs from me too!!
Kristi
1045086 tn?1332126422
Michelle, Lulu is absolutely right on this!  Your boys need YOU.  They need you to take care of YOU instead of wearing YOU out and using YOU up.  

If cutting back on activities or transportation leaves you racked with more guilt than you can tolerate, put that beautiful brain to work on another plan.  Four boys have lots of friends they are injoying these activites with.  Talk to the other mothers about helping with transportation.  

You many have to fess up to some physical limitations that you'd rather deny or keep private (along with some petrol producing cash).  SO WHAT!!!  I'm willing to bet you will meet with compassion and a genuine willingness to help you AND the boys.

If it makes you feel better, think of a talent you have that you can use for bartering power.  If not today, then down the line somewhere.  Remember, you'll have another driver in the house before too long.  Scary but helpful!

In the mean time.....  
***THANK GOD for your doc, her compassion, her forthright nature, and her example as one of the many people you have touched with your loving spirit who now want to return the kindness.  Amen.

***I HATE hearing that you have been hit by yet another blow.  Maybe the time HAS come to move on from Copaxone?  It's hard to see where it's helping right now.

***Vent all you want and then talk to yourself honestly to find out what reality is as anger fades, what is changable, what is acceptable, and what your minimum requirements for time and effort are.

***I miss our lunches and dinners and social time together.  I wish we had met at a garden party instead of on an MS forum.  I wish we both weren't being overcome by events.  I wish we could go out and shop for six new pair of Alegria shoes.  But wishin' don't make it so.  It also don't make me go.  You've got my number.  

Mary (who's up-to-late ramble has taken over)
667078 tn?1316000935
Double Vision stinks. Mine has been my constant friend since I was two. No one understood my anxiety as a child navigating with this condition. I am having to spend a week with out Polly and that is hell for me because she is my sight. I am doing it because my condition makes my in laws down in Florida uncomfortable so I have to pretend I am okay.

Sorry you are getting zilch support. Yes it it is hard for people to understand what they do not see. My Doctors all looked incredulously at me when I described my diapragm spasm and why I did not go to the ER. I explained I was at my sister in laws and she decided I was doing a Drama Queen thing and was upsetting her evening. There are times when I wish I could pass this dreaded disease on for a minute so my loved ones would get it. Even the best of them do not get what they can't see like double vision.

YOU HANG IN THERE YOU DESERVE A BIG HUG.

Alex
645390 tn?1338555377
Thank you all for listening to me here.  I am up after a very uncomfortable night on the couch.  I just was too angry/sad to be in the bed.  Anyway, he has now gone on his "old man" Sunday hike.  (that is what they call it.) and I feel better he is not here.  Dont get me wrong, he is a good guy, but I have learned he doesn't have sympathy/empathy for people.  I don't think you can "learn" that trait.  I have asked many times about therapy for us, he always says he will do it, but "somehow" the time is never there.  Alright off this subject, this could be a book with him. (I am sure this is not a uncommon relationship.) I wish I could have married myself sometimes...but I was already taken.


Paula, yes, I do need to get some of this extra stress off of me. I sometimes do wish I had a cast on, or something that "shows" how I feel.  I wear a leg brace, which I think when I first started wearing it, he was seeing there must be a problem.  Well, I think no longer.  It just became a part of me, and now it is a normal thing for me.

Ren,  I dont know how he could still be in denial either.  He must have rocks in his head, which I am sure would show up if he had an MRI. He does take his part with taking the kids here and there, and does lots for them when he is around.   I also know he is very stressed about financially supporting us and the future. He thinks much about talking care of us and providing for us.  

I feel like I am husband bashing here, but I know he loves me and worries about the future.  In his own way, he is trying to do what he thinks is best.  He is just not emotionally there, I dont know if he has the deep capacity there. His intentions are good, but he is very black/white about how things should be.  He is a good man, he just isn't a sympathetic type of person.  Although when I am grieving about my mom, which is still fairly often, he is there to comfort me. We have been together for 22 years, married for 18 and I know it will be better when the kids are more independent.  Life is too full, and worries to high.

Lu, as always thanks for the reality check here. No, my parents NEVER did this for me or my siblings.  I never participated in girl scouts (which I really really wanted to do, as all my friends did.). I was never involved in sports, one time they let me take a week of summer camp, it was soccer. I wanted to sign up again, but the answer was no.  It went on like that.  I didn't have many toys, which was fine.  I remember always cutting out paper dolls with my mom, and that is a great memory.  Anyway, cant go on about all that either.  My dad traveled about 75% of the year, so it was hard on my mom I believe.  I do think I am "trying" to give and expose my kids to be able to try and have fun with all these activities.

I also understand it is causing me to get sicker, and I will listen here to all the words given to me.  Soccer stops in a few more weeks.  The next 2 months I think will be little in the activity way.  Only scouting and Sunday school will continue. I think that will go well, and then I am going to talk with hubby and tell him to stop signing them up.  (He is the ones that signs them up for all these things, and then I am usually the one that schleps them around.)  He starts back at school (hubby) in January, and I dont need more activities at that time.

I am really going to do this.  I never put me on my list. Not a good thing to do, which I am aware of that.

JJ, yes, I do need to find a quiet peaceful time to talk with my hubby about our life here.  The time that comes is around 11 at night, so maybe I should really try to stay awake. Not sure if I can do that. Thanks for your comment.

Kristi, thanks for your comment and listening to me as well. Appreciate that.

Mary...thank you my friend.I have been thinking about talking to some of the moms about what is going on with me, so they can help.  I am sure they would understand and really help my transporting the kids.  (I have known this for a long time, but I guess it is a sense of pride that I can do everything.)  The time has come to ask for help, as much as I HATE that.  I have always been very independent and HATE to rely on others. That is  a problem with myself I understand.    I too wish we had met in a gardening forum, although that would be really strange since I don't garden.  We would have had nothing in common and I would be very confused by all the garden talk. Kind of like me being in a hardware store...  Do you sing?  I wish I had met you in a chorus.  That I like, I used to be a "sweet adeline", which I haven't done in many years.  It is barbershop singing, and that would have been a fun way to meet.  Anyway, thanks as always for the laugh.  I am chucking right now.  Thanks for being my friend.

Alex, I am so sorry about your double vision you have had your life.  Honestly I had no idea how debilitating it is.  Perhaps I was supposed to have this, so I have more understanding of what people go through?  Yes, I have had the thought EXACTLY that I could pass on how my body is feeling to people who dont get it.. Like the line, "walk a mile in my shoes..."  But, that is what this lovely forum has done for me.

I thank you all for being here.  This is the best place to be, where everyone gets "it", and I can just be me.

I need to go, and I am embarrassed to say how long I have been trying to write this post.  All I know is it was dark outside when I started and now it is very light!

Have a good day my friends....Love to all,
Michelle



572651 tn?1530999357
The dawn always brings a different perspective, doesn't it?  

Now it is time to put Michelle back on that list of important people in your life - and I hope you put that name at the top!  I am often aware that I am fortunate that my children were grown by the time I got my dx.  It has to be such a struggle for you young women who are still juggling so many demands.

Do have that talk with DH and issue the ultimatum that there will be no more signups of the boys unless you do it.  Then choose appropraitely where you can get help with the running.  If he signs them up, then it will require you to refuse to do the hauling.  I know that will cause strife and turmoil, but it may be the only way you get DH to truly understand.

Enjoy this beautiful, sunny autumn day (I assume it's sunny up there!) ---- I'm with Mary about the shoes - I love my first pair of Alegrias and want one of every design.  If only I would hit the lottery!  (everyone else, I'll post a thing about these shoes and why they are so good!)

hugs to you M,
L
1394601 tn?1328032308
Unfortunately you are married to a selfish man that puts his own needs before the needs of his wife or children.  It takes a strong woman to push him aside and do what is best for the children.  You sound just like her!!!!  Please do reach out to the community around you for help.  Talk with your children about your limitations and what you can and cannot do for them.  Keep in mind that there is truth in the saying, "I was a good enough mother".  We don't have to be it all.  We just have to be the center of love in our homes when our partner decides to bow out.  One day he will regret throwing it in your lap.  There will be graduations and weddings.  You will be the "queen" and sparkle in the eye of your children.  Watch and see...

From one that knows...
Avatar universal
michelleric,  I'm so sorry for what you are going through.  I think being positive is great, however; that doesn't mean you don't have the right to complain and share your frustrations with us.

I am sorry your husband seems to be desensitized to your symptoms.  I hope you don't mind me asking but have you guys considered counseling?  I'm wondering if counseling would help him understand what you are going through so he could be more supportive.

Part of me wants to think that maybe he's scared of what you're going through and is in denial.  Maybe due to denial he thinks if he can force you into doing things, in his eyes, as long as you do what is normal then you aren't ill.  It's strange how men can be about the illness of their wives.  Then again, maybe he is just being a jerk.  In that case, he needs a good kick in the behind.  

It sounds as if you are trying to do too much.  Try to slow down and take care of yourself.  

Best wishes to you, my dear.
645390 tn?1338555377
Sumani and msgrig,

Thanks for your replies.  I have talked a bit with my children, and they do understand I can no longer do some of the things I used to do.  They are much better with that than my husband is.

I have recommended counseling, he always says, yes, that is a really good idea.  Well, it has never happened, I cant force him.  The "time" is never there...

He is scared, I know, as he has told me this before.  He has since planned (and is planning) for our future financially.  All the scenarios that I don't like to think about, he does.  He is more cerebral than emotional.

I do know he loves me and I do love him..I know he is not empathetic and when he cannot "see" the problem, he doesn't think or know it exists.  Now the days I cant walk, he gets it, the days I look "normal" he doesn't.  He needs to keep working on this, and I do hope one day we do get to a therapist.  It would help tremendously.

I am doing too much, I know, trying to cut down.

Michelle

I just wish I had a wife.  Than I would be taken care of at least emotionally. (I think!)
1394601 tn?1328032308
Don't be surprised if he agrees to counseling then sits with his body language saying, "I don't want to be here."  Our marriage counselor finally told my husband he wanted to work with me for awhile.  Actually he wanted to work with me because I was the one that wanted the marriage to continue.  My husband had no plans on walking away...his church would never have allowed it.  He just wanted to continue is poor behavior and did.

One thing that DID grab his attention was when I used money to pay for transportation for my children to activities.  Yes if another family was willing then normally, except for small gifts of thanks, they would go with them.  However, there were times other families could not help out so I HIRED transportation.  Usually a high school senior that I knew was responsible.  He would come to me angry but I held my own.  I wasn't able.  He wasn't willing.  My children were NOT going to drop the activity because I didn't have the time.  

In the end, I found I was strong enough to keep things calm in our home.  He did what he wanted.  I did what I wanted and needed to do.  In the end, I have only compassion for him as he is an insider looking in when family stories are told.  He wants to claim his sons today.  He wants a relationship with them.  They are grown men and have little time for him.  Slowly relationships are being built but I see the hurt in his eyes as our sons gather around me...bringing news of jobs, grand babies on the way, etc.

In closing karma comes to kick and he will suffer in the end...All we can do is have compassion knowing what he will endure later.
Avatar universal
michelleric,

I pray that you will somehow get him to realize counseling would be very beneficial for the two of you.  If he could understand that it's not really marriage counseling.  It would be a counseling to help him understand your disease and how his understanding of the disease and how you suffer would help you alot.  I'm thinking there may be an online video or something through the MS society or something.

I really am sorry you're having to go through this as well.  My thoughts and prayers are with you.
198419 tn?1360242356
Dang woman. So sorry this is happening.

Just be sure to not give yourself the guilts over it all. Ok? Promise? Your kids will learn compassion and empathy from you. You'll instill it in them. They know what you do for them despite glitches that come along.

Not worth saying anything to hubby it seems.  Maybe he'll see the light through the silence - if your able to pull it off.

Thinking of you,
shell
645390 tn?1338555377
Hey Shell,

Thanks.  Life keeps going...sometimes for the worse, sometimes for the better.  All the strife and turmoil last year, really changed my priorities in my life.  I am not sweating the small stuff anymore, as I have seen and felt really big awful things.

So, double vision or not, it is still ok, and my life goes on.

I must admit, I had a bit of trouble at work today, trying to help this man with double vision.  If only he knew I was seeing 2 of him as well!  As long as I keep objects people to my left, I am ok.  It is better and I am thankful.

I hope you have a wonderful thanksgiving,
Michelle
Avatar universal
Hi Michelle, I feel for you.  Double vision s**ks! I walk around sometimes with one eye closed, when I am driving...... I "wink" at everyone, LOL, man, woman, old....etc...

I just love to make fun of myself.. LOL
738075 tn?1330575844
Hey, Michelle,

I can only offer hugs and sympathy.  Everybody else has said it right as far as I can see.

Thinking of you...
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