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764912 tn?1322711843

What do you do? suggestions, venting

Ok, I hope you all can help me get a grip today...:)  Usually my husband is supportive, he does so much.  Sometimes I get upset because I have given him information from the Invisible disease website to help him understand some things that are said can discourage me.  For example, I think he thinks I will give up, because he is like a cheerleader ( no offense that can be good) like when I can't do something because of my hand tremors he says "oh yeah you can do it."  No I really can't, it is ok that I can't I just move on to something else.  It is frustrating, doesn't he see what I go thru or understand?  Sometimes I can't dial a phone easily with the tremors, so it makes sense I can do tiny pieces of jewelry.  Why doesn't he see it?  Then I think if he can't see and he lives with me, how will anyone else?  Then I feel like a witch for expecting so much.  I guess we all must feel alone in this at times huh?

Thanks -------
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764912 tn?1322711843
Thank you, I will try your analogy.  He is funny, he does do jewelry with me and it is fun, maybe not romantic but fun. LOL Maybe because we make it and don't wear it. LOL :) Actually I did tease him gently and it seemed to be a good laugh for my whole family, he promised not to wear a skirt and use pom pom's.  And of course I thanked him for always being on my side.  But I like the analogy you used.

He forgets too that I went off a med. to control the tremors, because I am going to Mayo Clinic and wanted them to see the neurological side of what happens and Dr's in tell me the Mirapex masks this.  They want to rule out Parkinson's or stroke.  So we will see.
Thinking of you often,
Tracy

You are very thoughtful and it is nice how you put things for others to understand.  
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768044 tn?1294223436
That is a really good issue to bring up because I know we have all felt that way before, you are so very right!

Sometimes people say things that try to help us or encourage us or make us feel better, and in the end those things they say just end up making us feel like they don't understand or like they are blaming us or like they expect more from us then we can give. Or sometimes they just say hurtful or discouraging things by mistake because they're not thinking at all. Lots of times people just don't think.

I can see why it is especially frustrating in your case because it is your husband, because as well as living with you, he also sees a side of you that no one else sees. Everyone has a public-life self and a private-life self... and because of our society rules, we all try our best to "put on a face" when we our out in public that everything is mostly okay, at least the best we can, even when we have obvious disabilities or an illness. But at home, we relax because we are around people we trust and we can tell the truth. When someone asks "how are you?" at home, they really want to know, they aren't expecting us to just answer "fine" every time. So, your husband sees you the most and he also sees the real you too. It makes sense that you would expect him to see.

Something that my mom says to me sometimes is that even if people try to understand, sometimes it is just impossible to fully understand because they haven't lived it themselves. She says some people have just never experienced pain or something really scary yet. When we are talking about a stranger or a mean doctor, someone we don't love... sometimes I personally start to think "well, I wish then that they would understand!" but I have to remind myself that I don't actually even wish that even the most horrible people on earth would understand the worst pain or the scary things that have happened during my migraines... so, I couldn't really wish that anyone else would either then. And, we obviously never wish that the people we love understand from experience... so, then, what can we do??

Well, I think you already mentioned the most important thing, and that is knowing that his heart is in the right place. Anyone who is human is going to make mistakes, and he is just making a mistake by saying that, and knowing that it is just a mistake sort of makes it a little bit better maybe? But, then, the important thing is stopping the same mistake from happening over and over again. And, you mentioned showing him information from the Invisible Disease website, and I think that is useful tool too.

I think that when it comes to migraines, it is important to switch the whole paradigm in the general public from thinking of them as headaches to understanding that they are a genetic neurological disease. It is important to think of migraines in the same categories as other genetic neurological diseases such as epilepsy... or even just other genetic diseases such as diabetes. If we look at them that way, then it stops being about something that "we can get over" and it starts being about something that "we can control".

Your husband might be thinking about your situation like someone would think of a sports injury... keep working at it and it will get all better, you will get over it. But, migraines are different then that, migraine is a genetic disease you are born with and migraine is a disease you will have for life (although hopefully you will become asymptomatic one day, or very close to asymptomatic, and I think that should be the goal for us all). Physical therapy and keeping fit are important for us too, like with a sports injury... but pushing ourselves to do things we cannot do is NOT important or in anyway useful while we are having an attack. Would anyone ask a diabetic to run around a track while they were experiencing a hypoglycemic (low blood sugar) attack? No! They wouldn't be able to do it and you could kill them if you forced them to exercise while their blood sugar was already dipping! Would anyone force an epileptic to make their own phone call during a seizure? No! During a seizure an epileptic can usually do nothing but have a seizure! So, it is important for others to understand that migraine is a genetic disease just like any of these other genetic diseases that are currently usually more understood by the general public. And, that during one of your Silent Migraine Attacks, the Neurological Symptoms you display, such as tremors, are real limitations that cannot be overcome with will-power alone... just as a diabetic absolutely could not overcome hypo or hyperglycemia will will-power and an epileptic could not overcome a seizure with will-power.

We can prevent attacks and control our migraines using medication, trigger avoidance and life-style changes... just as diabetes and epileptics can prevent attacks and control their disease using medications and life-style adjustments... but, during an attack, we have our limitations.

Maybe that analogy would help your husband understand that sometimes the cheer-leader stuff can be too much and if you tell him that you really can't do something and need his help, that means he really needs to help you and that it's hard enough having to ask for his help in the first place.

Anyway... we know that you won't give up and that admitting your limitations is not the same as giving up! And, we see. And, you aren't expecting too much, you just are expecting to be understood and accepted, and you deserve that! And, we all understand what you are saying here.

Oh... and not being able to do up tiny pieces of jewelry is pretty normal I think, you always see that in films, wives asking their husbands to do up their bracelets or necklaces! Or husbands asking their wives to do up their cuff-links! So, even people without tremors can't do up their own jewelry I think! Maybe tell your husband that! Say it's normal because in films people are always doing up other people's jewelry and it's even romantic to do up other people's jewelry so he should do it to be romantic like in films!
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