How has TN affected your family and significant other?

General General TN & GPN (Old Site)
1

This is a difficult subject, but I feel the need to bring it up. I'm probably not the only one here who has a spouse that feels anger and animosity that has grown over time. I've been married for 12 years, the TN started about 9 years ago. At first, I went through several root canals before finding out my problem wasn't dental. Then, the drugs, once I had the TN diagnosis. Tried many kinds of anti-seizure meds, allergic to carbamazapine, nothing else worked, but I gave them all a try. Finally, I had MVD surgery which gave me about 6 months of normalcy, that hole in my skull was so minor compared to the electric ice-pick-to-the-face I was used to.

When the electric pain woke me up one morning, I knew my bliss was over. My husband was convinced that I should be cured, so he was actually angry when he realized that "I was acting like I'm still in pain". I try to do all I can, but some days are just horrible. I want to crawl into a hole until it is over. He seems to think I am making the whole thing up, I've tried to get him to read what others say so he might understand why I can't stand cold wind, sharp noises, etc. He is convinced this is something I've made up.

We live in a very isolated place. Nearest neighbor is literally a mile away. I really love living in such a wild place. It is beautiful, and I wouldn't want to be anywhere else. I've always loved animals, so I have a small menagerie of chickens, goats, dogs, cats, a donkey and a mule and a darlin little parrot who never fails to bring joy to my heart. Most of the time I am here alone, which suits me. Even if I'm outside when an attack hits, my dogs seem to sense it and they know the routine. If I can hold my face against their warm fur for a few minutes, I'll be all good again and I can continue with whatever I need to do. Not only do my dogs know when I am in pain, they come to help.

I rarely have the kind of attacks where I lose all sense of direction and I have trouble standing, but it has happened. Couple of months ago, I fainted and took a tumble down the hill (we live on the side of a mountain, off grid and 12 miles from a town). As always, my pups were right there. One dog ducked under me and saved me from a face plant, I came to and these dogs had rolled me over on my back and were doing their best to get me sitting upright. I'm amazed at how these animals can recognize when I am in trouble and have the instincts to respond.

I am currently living like a hermit. I had type 2 pain until recently. I have had two episodes of that lightening bolt pain that (thankfully) was just a flash of blinding pain. I'm scared that this is going to continue. My husband is so fed up with me and this pain that he now seems to think is my own invention, especially now that it is getting worse.

Recently, we had a wildfire that almost destroyed our home. He wasn't here at the time, but while I was terrified and surrounded by flames I let him know it was really bad, sent pics and let him know I might not survive this. His response was that he wanted everything to burn so HE could start over. Too bad for him, I survived and so did the house. Now I'm living with the knowledge that my husband wanted me to die in a horrible fire so he can move on. He says that that's not what he meant, but how do you "unhear" such a thing?

2

Oh my gosh, honey I’m so sorry. He sounds like a first class jackass. Has he ever gone to one one of your appointments to see your the neurologoist? I ask this this because because I dragged my old man to the first few appointments with mine, he actual spent more time explaining what tn was to my husband and how we were going to try and care for me than anything else. Which helped a little for him to understand. At this point I’m not sure how I would deal with anyone with so little compassion towards me.

Since I’m on FMLA right my hubby is my caretaker. It’s a lonely place for both of us. I know he is very worried about about me right now and I try to tell him ill be okay. But it doesn’t help when other people we know have heard about tn or look it up after we have told I have it, and later on they tell my husband “oh you know the other name for that is the sucicide disease”. It just freaks him out more. It sucks. There are very few times he gets irritated but I think it is more on how the the tn is controlling me lately, and how stressful it is with me not working.

Anyhow, I’m sorry. I don’t even know how or what I do if my husband would say something that callus. Hugs to you.

3

I second the jackass comment! :) As with any disability that people can't "see" you get the disbelief or non-understanding of what it's actually like. My problem is when I have pain so bad that all I can do if it happens to be a day where both children are in daycare and school is go to sleep (which does sound strange that I can actually sleep) and hope it goes away by the time I wake up. Last time I had that pain was last week and it made me vomit. On these days I can't do much in the way of housework and I get in trouble over that. He thinks I just sit and watch TV all day and that I use TN as an excuse to be lazy basically. I've also explained that my meds make it really hard to get up in the morning (often I crash out on the couch while the kids eat their breakfast and watch a bit of TV before school, makes me feel like an inattentive bad mother). So I guess there are probably a lot of people in the same boat or at least can empathize with you over your partner not understanding.

4

Tough if he is not willing to take the time to learn about TN and that it is real and there is no excuse for what he said or to treat you with anything but respect. Any illness effects a family, besides my TN, my hubby was in hospital 2 1/2 years, leg amputated, in total kidney failure, still has open wounds on remaining foot, in a wheelchair, etc...on bad TN days I am not as understnding as on good days, but somehow together we have pulled through and keep on. Can't say it is always bliss, but no marriage is, but there just has to be understanding ofg the other and compassion. I am blessed he was willing to go to Dr's before he became ill and he also did a lot of reading to understand what I go through. We have been married 17 years, he is 52, I am 47, so pretty young to be going through all this. But what I want you to hear is that you deserve to be happy, even with TN, your property and animals sound wonderful, without my dogs and cats I am certain I would have gone insane by now, but you deserve that same love from your spouse! Each of our situations are so different, would he consider counseling together or any church help? I just feel so much for you, wish I could just make it better for ya...Don't let him define who you are, you sound great, of course I am an avid pet lover so relate there. Be good to yourself, do what is best for you. Sending gentle hugs to you and all those wonderful furry and feathered kids of yours, and remember we are always here, we understand and we care about you!

5

I am so sorry Suzanne. You simply do not deserve this. It is bad enough to deal with this disease day in, day out without also dealing with him. I will say up front that you may not want to hear this, but my opinion is you might want to start looking for a way out. You may love where you live, but without the support that we all need, you are putting your life in danger. What he said would scare the crap out of me!! It wouldn’t matter to me that he ”reworded” it after the fact.

Our lives are tough, people w/out TN (& with TN!) are constantly amazed at our strength…but we have no choice, we have to be that way to survive. You are an extremely strong person. But, direct threats to your life that go unanswered by your significant other? No, you do not deserve that, no one does.

Please, please, please start planning to get yourself into a safer situation. There are better people out there, people who care deeply…you are worth more than what you are receiving.

With love and caring,

Pam

6

I’m of the mind if anybody leaves … He does… Can’t take all those loving helping animals with you!

7

Hi Suzanne,
TN has affected my family and Husband almost as much as it has affected me but differently.

  • Helplessness;, seeing my intense pain, tears, dopiness from meds and feeling helpless.
  • Fear; they fear for the future as much as I do in terms of my quality of life
  • Change; they’ve all had to learn to adjust to the myriad of changes that have occurred to their lives including the change of my abilities as a result of TN. It has affected us all in so many ways.

Those three things encompass sooooo many aspects of how TN has affected them.
It’s part of the burden we all carry to a certain extent by having TN.
I can honestly say that the key to making things “easier” for us as well as our families is “communication”.
Being able to share our thoughts and feelings and acknowledge honestly all the aspects of change as a result of my TN has helped immensely. It’s not easy by any means, and it’s a constant struggle but it definitely makes it easier to be able to talk about it, and address issues as they arise as best as we can.
We all react differently to change and stress, we all have different coping mechanisms.
So in order to get through this journey to date, we’ve really focused on being honest and non judgemental in our conversations. As I said its a constant work in progress…living with chronic illness affects everyone in our immediate circle, but differently.
I wouldn’t hesitate to use an outside therapist if I felt one of us wasn’t responding to what we are doing.

TN is a lonely condition, it places most of us in isolation, I certainly appreciate your comments on your animals and how they are there for you. My little dog Roxy has been my constant companion and she “knows” when I’m struggling. Yesterday was a rough day, she was by my side the entire day, resting her head on me. Licking my arms, legs offering comfort. Without her these past 2 years I would have probably gone insane from the loneliness and isolation.
Her expressions of love and caring have gotten me through many a horrid time.

I hope you and your husband will be able to have a conversation about your thoughts and feelings and find ways to cope together…
Thinking of you, (( hugs )) Mimi

8

Oh Suzanne - I too feel you should start to think about protecting yourself! I too live "on the far side of no where". We have been threatened by fire several times and I can't even imagine my husband not caring about our home or ME! We joke about it sometimes and he will say "let it burn" but only because it is insured and we have learned over 35 years of being together that everything but human life can be replaced. My husband is a retired police chief. He has had a tougher time than I have coming to terms with my illness. He is definitely a doubter when it comes to the unseen or "feelings". He has seen the worst in the world and has reason to want proof. In the past he would have doubted someone who told him they have been through what I have, but he has been through this with me. I laughed until I cried when mister macho brought me a stuffed boxer dog in the hospital after my MVD. He wanted to make sure I wasn't ever alone. We have a boxer at home that is always with me. It certainly has not been an easy road but we take it day to day. We both wish that I was my "old self" sometimes. I guess what I am trying to say is that it take two to make any relationship. The circumstances are always changing. If your husband is so shallow not to believe that some day he may need the help of those special people in his life he is an idiot. You get what you give in life.

9

Sorry,but your husband sounds like a real jerk! Im very lucky in that my wife of 31 years educated herself on the condition and was very active in my treatments.Sometimes the pain is so bad i selfishly think she doesn't care or isnt doing enough to help,but that's all on my pain crazed mind.Im hoping those days are behind me after Gamma knife,but i've thought that before.I thank god for my wife and the way she has stood by me and helped me in more ways than i can describe.You deserve nothing less.Good luck to you,keep pluggin' away.Don

10

Omg, that is the saddest thing I have ever heard. When I first read your title I had no idea your story was gonna be so tragic. Your husband does not sound like a loving compassionate person. I don't want to sound judgy or anything, but I really feel that is the worst thing when your in pain to have someone who does not believe your or love you enough to want to try and help you.

I feel bad because my husband is kind of the opposite. He feels so bad when I am in pain he almost is in tears because he cannot do anything to help me. I cannot imagine having someone tell me they wish I was dead. I think you deserve better than that. There are alot of people here who understand and have felt your pain. And I tell you what, you ever, EVER need anyone, to just talk or vent or cry to... you can come here, and especially to me girl. you go find me on face book and I will talk to you any time, I have a direct link to my phone from FB and would be will to support you. You can find a lot of friends on here and I think that you really need friends who can support you! I hope and pray he comes around for you, we all need some one to be there for us, your lucky to have your dogs, but marriage vows do state..."for better or worse, in sickness and health." I hope you have someone around you to support you. but you have all of us if you need us!!

11

I was so glad to see this post because I've struggled with this as well but I'm sorry for you. My husband is really sick of me not feeling well. Some days he seems supportive and eager to help me find answers and help but other days I feel like I need to go into the other room to cry because the expression on his face tells me he has had it with this. He loses his patience with me more and more. Not that I would ever want anyone to feel this but I would like him to feel it for just one day so that he could understand how this could cause me to feel that way I feel. Fortunately my husband isn't a complete jerk like your seems to be but it has definitely affected my relationship. I have heard many times that he just wants his wife back. I don't have any answers for you and I'm sorry that you have to deal with this on top of the TN but I wanted you to know that I have felt guilty for burdening his life with this condition and that's pressure that no one going through this needs. Good luck and try to just take care of yourself and know that this is not how someone that loves you should handle this. I hope he can learn to give you the support you need.

12

Thanks, everyone. I am being hard on the guy because I should know by now to expect him to say something insensitive. I think he feels helpless because he can't fix it. I fell in love with his quirky sense of humor 13 years ago. I used to have a pretty thick skin and I could banter insults back and forth just for fun. I miss those days before the lightening hit.

I feel like a complete drag, I wouldn't want to hang out with me either! I just don't have the same sense of humor anymore, but I don't think that is a bad thing. I hope I have grown and learned compassion from 9 years of living with TN. I still have a sense of humor, I just laugh at different things now.

A couple of hours ago, I was brushing my tiny Diva goat, Daisy, when a chicken hopped on her back, nestled into her fur, and prepared to sleep. The indignant look on Daisy's face was the funniest thing I've seen in a long time! Especially because she held perfectly still with that look of disdain at such insolence, for about 5 seconds. It's like living in a Warner Brothers cartoon around here!

I'm in this for the long haul. I just have to vent sometimes. I've never been afraid of him, I could really do without his hurtful attempts at humor.

13

Hi Suzanne,

thanks for the story about Daisy and the chicken - it made my day. I can imagine the look of disdain!

I am sorry for everybody who's having to deal with insensitive husbands, wives and other familiy members. Your stories make me really sad! My husband tries to be very understanding and is a great support for me however he seems to be living in a bubble and he is convinced that "the nerv will just calm down" and I will recover very soon. I like that he is optimistic, but he just refuses to listen to my fears about the future.

I think my main problem with this issue raised by Suzanne is my own fear. I am really really afraid that my husband will become fed up with my being sick all the time and not able to do things. I am getting paranoid over this and this puts almost more strain on our relationship than the TN itsellf.

14

Well....while i do concur with the above comments about your husband being less than sensitive to your condition, i also am inclined to give him some benefit of the doubt. Maybe he is having a much harder time dealing with this than you know. It can be really hard to watch the person you love deal with something you can't help AT ALL with.

I think that maybe he should not only come to doc visits with you and all that...but also maybe he need just some counselling on his own. Maybe he needs a place to vent all of his anger, and fear, and feelings of helplessness.

The "hope it all burns down" comment sounds more like depression to me than a real desire to be rid of you. I can say that for myself, when i'm really down, i often have thoughts of just walking away from my entire life. I know it was a hurtful thing he said, but try to give him the benefit of the doubt...at least until he proves he doesn't deserve it.

I'd really really push for him to seek counselling...it might be just what he needs.

~Wishing you and your husband peace

Mistee

15

Mistee is right.Us guys are really stupid when it come to feelings and such things sometimes.Sit him down,make him look straight in you eyes,and tell him how he is making you feel.My wife had to do this more than a few times before i "caught on".

16

I am really sorry for all the hard experiences this condition has brought you. TN is not fair or friendly. I am so sad that you have a lack of support from your husband. Would he consider checking outbthisnsite? There is a family group which might give him perspective. My biggest frustration with TN is how is has disabled me from being the wife, mom amd friend I used to be. While I can not understand the unfairness of your husband’s response I do understand the unfairness of the situation.

17

This is a good discussion because it is so true, while we are dealing with so much our loved ones may try and understand and may do an awesome job at that, but truly understanding this pain is impossible unless you feel it. It does change us, but I always keep the hope, with that said I have had some of my worst attacks ever this week. Last night I was grooming my Saint Bernards and it hit, oh did it hit. I was having fun, so were they and then thats it. Now the fear and anxiety which I try to control. My hubby said today he hates to see me with my shoulders down looking beat up, and he is supportive, but I know feels helpless, especially because he is disabled and I am full-time care taker, really hard for him...but in the midst of such bad we have good and blessings, this Saturday we celebrate 17 years of marriage. No marriage is perfect, I heard something on the Today show today that said with marriage you have to fall in love all over again many times, because things change, but it is like a garden if you don't water and nuture it, it goes away, the same with marriage and love. I thought it a really good analogy. And its true, hubby loved who I was before TN, I am still that person, but have change too, lots, he has had change, he was not in a wheelchair with a leg amputated when we married, not in kidney failure, but I don't love him any less, we just had to, exactly fall in love all over again! We also went 2 1/2 years not living together while he was hospitalized, coming up on a year back home (yeah!), but seriously we had to adjust and find all new ways of loving and living, just like with TN. My biggest is anger management and frustration, but I cope the best I can. Like many my animals are such a source of joy and love the stories!!! We all could learn a lot from our fur kids, unconditional love :) Okay I have rattled on long enough, best to all!

18

sorry suzanne-- some men are really bad at dealing with stuff like this-- mine just pretty much tried to avoid the subject--and went on with his normal activities even though i felt like I was losing it and wanted more support-- my friends didn't get it either-- and just told me to keep my plans --the distractions would make me feel bettter-- so we are pretty much in this alone.. thank goodness for this site...

I have had good control with meds and was only diagnosed a few months ago-- so I have no idea what the future holds-- but i did get the sense i will be going it alone...

I understand your need to vent-- and I am sure your hubby has many redeeming qualities or you would not have chosen him-- but dealing with this brings out the worst in everyone...

Thank God for your wonderful animals!! My Lab was wet with tears more than once! Your beautiful surroundings are probably some comfort as well!!

Don't give up!! New treatments are coming out all the time!! Did you look into PNS?? Nerve stimulators seem to help lots of people when nothing else does!!

Blessings to you on your journey... cindy aka tacocat

19

I really sympathize very very deeply. This is so unfair when you are in agonizing pain.

I have received a similar reaction, not from my husband, but from close friends and relatives.

My husband, has been wonderful. He encouraged me to have the MVD and he searched online and found this forum and encouraged me to join since we had never even heard of anyone else having this condition.

That being said, I received quite a different reaction from some relatives and friends. I was accused of taking too many drugs and accused of not trying to get off the drugs fast enough and someone even accused me of being a "junkie". After the last discussion, I was devastated and feel that some people do not even try to understand the true situation.

Just talking about it on the forum makes me mad all over again.

I did not ever plan to take drugs and would never intend to, but like everyone else on the forum, these meds keep us going, and thank God there are options available now.

This is why I think all the great ideas are so important. The more we put out there as far as information, explanation, cards, flyers, videos or interviews, the better I think the situation will become.

Thank you everyone for your input and interesting topics and questions.