I always feel stupid! On top of that my boyfriend always says that it’s my “fake disease” or that I’m fine when I have to get things done with my family n hurting otherwise. Ugh! If only he’d understand that there’s pain all the time. There’s only time that I can’t deal with it.
I totally get what your going through. I have had that with my husband. For instance yesterday my mom had to have a heart test. I ran into lots of old coworkers and by the end of talking to my mom, doctors, and friends I was TOAST. I could see the disbelief in some of their eyes because I “looked fine”…so now my husband again wants to do something and I’m not sure I can. I’m sorry your feeling frustrated just know your not alone.
I don't have a husband. I used too but now I think I'm allergic to them. I swear, they bring me out in hives! Anyway, what I want to say is that I'm sure you love your boyfriend but please, please, please love yourself more. Everytime he refers to your "fake illness" stab him in the cheek with a fork. Just don't tell him I told you to do it.
Oh Crissy, I wish I knew what to tell you. I have been dealing with this condition for almost 10 years. In my heart I know those around me believe me about what I'm feeling and going thru, but for some reason in my head I think, naw they don't really get it and think I'm faking it or using this condition for a reason to get out of things or get attention. Plus I think they must be tired of hearing me complaining and opting out at the last minute. Then there are people like your Boyfriend who flat out says it and calls it the "fake disease". That is the person you need the most and feeling that negative energy can just drag you down and actually make the pain worse - as Stress can be a major trigger.
I highly recommend that you see a Mental Health professional to help you deal with those inner feelings...Your mental health can play a big role with this condition. Take time for yourself and open up to others, you will be surprised how many people feel the same way... You are not Alone!
This can be helpful in your situation…
…
Firstly… When my meds made me an idiot… I told my new
Hubby that if he couldn’t deal with it, i would find somebody who didn’t care that i used to be brilliant, i have other asserts!!.. LOL
you are too pretty to put up with that shit!
He can get educated or get out of your way
Here are two things
make him read the first posts on these threads.....or read it to him!!!
http://www.livingwithtn.org/forum/topics/the-spoon-theory-link-repo...
http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...
And any body else who you want to share this with!! Let me know what you think!
I think something that would make you feel better almost immediately would be to dump your boy friend. He might be a boy, but sure ain't no friend. You have enough pain with TN, you really don't need a major hurtful pain in the ass too.
Anyone who is there for you and loves you when you are well but wants nothing to do with you when you are ill is not worth having in your life. Those type friends no one needs. You have too much to offer to waste on somebody like that.
He needs to understand that he needs to be in it for the long haul or bail out now. That being said, I often think about how difficult this disease is on my husband. When I get irritated because I don't think he "gets it", I just put myself in his shoes. I often wonder how patient and kind I would be to someone that is ill every day. It gets old for them too. I am sure he wants back the woman he once knew who always had enough energy, and that woman who was surely a lot sexier without an ice pack strapped to her head half of the time. This disease affects EVERYONE that is close to us. God help us all.
I think it takes a long time for family and friends to understand. Three years later my mom still sometimes thinks it is just stress and if I quit my job I'll be okay or sometimes she is certain I have fibromyalgia and that I told her that is what it is, lol. If you dare, snap him on the cheek with a rubber band to give him a tiny taste.
Sorry that he doesnt quite understand…no one knows what us TN sufferers have to go thru…luckily I have been blessed with compassionate people. Maybe show him some info about the disease to make him more aware of what you are going thru. I hope this helps and feel free to contact me whenever you need to talk or have questions.
I am new to this forum, but from what I can see, you are way too pretty to put up with that comment. Do you think it improves any from here? Nope.
I just wish we could give our disease to the people closest to us for only 1 day on our worse day so they understood!!!
I so know what you mean DonnaS. My husband asked me before my MVD does your head really hurt that bad?!?!? I wanted to say no I just want my head shaved for nothing.
Hi Crissy,
I am so sorry that life is hard for you. TN is hard enough without having the support of someone close to you. Many of us understand about feeling stupid. The meds are pretty hard on our cognitive abilities and emotions. I often can not find words when I need them. don’t worry, all your smarts are up there just waiting to return. I would say you need to surround yourself with people who are supportive and understanding. This is not a time to endure more pain than necessary. Be strong and stand up for yourself.
I know how you feel. When the wind is blowing I am afraid to go outside. If I do I cover my head with something. I am sure people wonder why it is 75 degrees and you have your head covered. I don't even talk to my family or children about it anymore. They don't understand and they will never understand. They think how bad can it be. One minute I am laughing(which sometimes causes an attack) and the next minute I want to get away from everybody and curl up in a ball in bed and cry. It is so hard to suffer so much and have the people around you treat you like it is not a real sickness.
i completely agree, life does suck. i hate this stupid condition and the impact it has had on my life over the last 7 months, my family are only just coming around to begin to understand how this affects me every single day and the struggles and challenges we have to go through and contend with. everything is difficult, eating, drinking and worse of all cant play out with my kids like i used to and even taking the dog for a walk has to be carefully considered.
my wife hasnt been very supportive, she has tried but is really struggling and has said she is unsure if she wants to continue with us being a couple due to how this condition has changed our lives and the effect that the meds that are supposed to control it have had on my moods.
as i have been told many times since developing this, what doesnt kill us only makes us stronger!
not feeling it at the moment, that will be the lack of real food though i assume!
Borris
It is really hard to deal with TN and live with a person that doesn't support. For me if I get to a point that I feel I am not being supported and have to hide my pain and frustration all the time I will be by myself. I think it would be easier to be alone than to always feel you are being judged for something you have no control over.
im so sorry to hear that people around you think it is 'fake' pain. the pain for me was unreal. i have worked construction most of my life and cut and bashed my self more times than i can remember, and tn pain is the absolute worst thing i have experienced. all i can figure is that with a physical injury, your body goes in to shock in some degree to shield you from the pain, but that does not seem to happen with tn. it seemed to me that is was the most pain i could feel in that area, and even if i was to inject gasoline under my cheek and then hit with a torch until it exploded, it could not have hurt any worse. if i was standing, i could not even sit down, if i was sitting, i could not stand. i dont even want to think about how that was. and the damm drugs make you feel like you have not woken up all the way or something, your head is cloudy. this is truly a horrible disease.
I would dump the chump! There are lots of compassionate guys out there. He is uninformed or just mean. Sorry for my bluntness. Best of luck to you.
Hi Crissy, I understand what your saying, my husband does that @ times, he’s like you were just fine, & then bomb something starts to worsen. I also, have a friend that when the first time commercial came on for fibromyalgia, she laughed, & I jus sighed 
the funny thing is, is that her Dad was diagnosed w/TN. So, now I think she believes, but not a caring friend it’s all about her. Good luck, pain free to all! Have a nice day 