I realise that I might sound a bit whiny when I am having a bad day and am in pain. Yesterday I had a disappointing doctors appointment where I was told I need a specialist to give an official diagnosis and do a referral to the pain specialists and if I want baclofen a specialist needs to prescribe it. I am on the waiting list to see one and can't afford $500-$700 for a private consultation. Hopefully I will be seen within the next 4 months or so (a long time when you are in pain!). So I was telling my husband what the doctor said etc and he basically snapped, said that he had had enough of it and that TN was the only thing I had talked about for days (not true but obviously in his mind he thought that) and that he doesn't want to hear about the TN at all. This isn't the first time he has done that and at one point he even unfriended me for a while on Facebook because he didn't want to hear it there either (I have friends who have neuropathic pain and others that deal with illness who don't mind hearing about it on there - we all support each other electronically). There is nobody else who I talk to about it in person and is it wrong for me to expect him to listen to it no matter what?
Anyone else had to deal with something like this from a partner? :/
It is not wrong to expect love and support from a partner in any problem we may have in life. That is marriage, a partnership! However, unfortunately, it is not uncommon to be lacking in this compassion from a loved one. Men are a hard crack anyway! They are programmed to care for us and try to find solutions to any problems we have. TN is a beast even to a neurologist, so what chance a non medically trained chap? There is a section in the COPING WITH CRISIS which explains the effects of living with TN to a non sufferer. It may or may not be of use, depending on the resistance your husband is putting up.
I feel for you both, you are facing something very different to your expectations in life together. I don't imagine you factored this into the equation? You have my support and you are in my thoughts, you don't need this at the present time.
My Marrige broke down over TN, My ex while being a health proffesional did not really believe I had a serious aliment.
Not until I had the MVD.
I suppose that Partners of People with TN are also in a difficult position.
TN is an incurable disease with no real outward signs of being there, They dont feel the pain- there are no Broken bones or cancer or tumor on an MRI that you can point to on an MRI and say "There thats the bit that is busted" etc
So they just have nothing to relate to.
TN is very hard for others relate to.
They just hear it from us. So the ones who are not empathetic like my ex cant cope and bail.
I had No support what so ever and it cut bad. It made coping very hard as it was just me.
Its great that now there are people here who know.
I know for me it's been hard on my husband because for one he doesn't get it at all and for two I think most men are hardwired to want to fix things to protect us so that we don't feel any pain and with something like TN it's hard because they feel helpless and well at least for my husband that's the worse place he can be so sometimes his frustration turns to anger that he can then sometimes turn on to me and he doesn't realize when he gets angry and shuts me down it makes things worse because instead of having someone to at least support me through my pain I feel like i'm alone. TN affects the whole family and can make things really hard. I honestly don't think our significant others don't want to be there for us it just goes against their nature to sit on the sidelines and do nothing so it can cause frustration and anger. I usually just let it go and try to give him some time and eventually he will chill out and come to me and either ask questions to understand the illness better or will just say he's sorry. I think sometimes it's just overwhelming and they need a little time
My partner has a way all of his own when it comes to shutting down. He tends to get grumpy, and whether he realizes it or not- it is directed at me most times. He also tends to get angry. When I cry or complain, he says "I don't know what to say, I can't fix this". And like others said, men are very hardwired to do such. However, my partner is very supportive. I would feel completely alone and beside myself if I had to face being completely shut down as in your situation. On top of the pain, I wouldn't be able to deal with the emotional harboring as well. I already had one relationship fall to pieces not only because of TN but other issues as well, so I can understand that aspect as well. However, he's your husband. He did promise through sickness and health. If he can't get on board with you and support you at all times ( or at least let you know that he is there, even though he probably can't do or say much), then why be on board with you at all? You're already fighting one enemy, you don't need to fight another.
It seems many men will let their relationship fall apart than be supportive. Fortunatley there are some who are supportive. I don't know if it's hardward or just selfish. It could be cultural. I know it's hard on people but eventually SOMEONE in the relationship is going to get sick. My second husband could not deal with my depression and we divorced. My current husband is so supportive. My second husband later apologized and said he would have done things differently had it been today and not 15 years ago. So perhaps age has something to do with it. Personally I don't think it's hardward. I think that they just can't deal with it and want it to just go away. I bet he would expect you to be there for him.
It's hard, really really hard, no one could ever prepare you for this. mine got tired of hearing it. What I did was try to stop talking about it and came on here and talked on here. I also had a good doctor and anti-depressant and a counselor. then just recently we went to a TN meeting together and that helped too, for him to see others with TN. I also left the coping with crisis page up for him and told him not to let the title scare him to read it so he could understand a little about what I go thru... he actually did and he said it helped. Then about a week later he said to me I am here to support you in whatever you need. I about fell off my chair.. and said well that's a first and said thank you. since that time we've talked and I have said I am sorry you have had to go thru this with me being crabby all the time and upset and he has said I am sorry you have this. We have really made some progress. But since the pain has returned has been a year I guess I had surgery in 08 and I guess I had bad pain for another year and a a half before that. So it really takes some time and lot of communication and pain doesn't really let you do that. I am lucky he told he would not quit me. He said what kind of cad would I be?? He said it's not what I wanted..but that doesn't mean I have to like it. So it has taken a lot of time for him. Plus seeing me down in the dumps at times doesn't help. So I am trying to get my mind right and tell this TN that I am going to deal and take my meds and get on with it. Of course I am at a different point than you are. My pain in pretty well controlled. I do hope things get better for you dear. Hang in there. Min
I do feel very grateful for this site and the wonderful people here. There aren't any support groups here like there are in the US and Australia so if it wasn't for the internet I don't know what I would do. I guess I should just hash it out on here, there is a chronic pain forum on another site and they have a vent thread (like "Stupid things non-pain sufferers say") :P We are off on holiday tomorrow and he said well if you are like this (when I had bad days recently) we can't go on holiday ... which is crap, I am going, this is the first holiday we have ever had as a family, I am NOT letting the TN deny me that!!! Thank you to everyone who have given me advice and to those that have shared what their situations are like as that's a fairly private thing to talk about :)
I think it is very difficult for our loved ones, they feel helpless and guilty that your were in pain and their not. Their also annoyed that this condition is effecting their lives as well as ours. I remember it being my husbands birthday and I was in a lot of pain, I accused him of not caring he accused me of spoiling his birthday! But I knew where he was coming from as it effects us all within the family.
Its a great idea to come on here and talk, were never tired of the subject, and that way we give our other half's a rest from it!
I feel that our family has got accustomed or ’ immuned ’ to our pain. They are helpless and frustrated . Our illness has affected their lives, too. When we are in pain , we cannot be a competent spouse to our partner nor a good mother to our children . To make matters worse, we demand more attention from them. The problem is there is no obvious sign that we are suffering, unless our partner is very observant . I also realize that the great love story I read from literature is non existence in my life. Therefore I don’t talk to my partner about this subject anymore. I will come here to talk. It is very hard when I was in a lot of pain , but what can I do? It is a lonely disease…
You deserve to have a break, enjoy your holiday trip.
I agree, it was not until I was ill that I realised no matter how close your family are, your alone with this and any other illness. I dont want to preach but that is where my faith came in. I did walks alone and spoke to God.
Also who knows if we would be any more understanding then our partners are? It must be very frustrating when your well and your partner is ill. I recommend coming here to talk and giving God a chance.
I guess I am lucky my husband has been very supportive. But at the same time time he has degenerated disk disease , that required a bilevel spinal fusion, that was not a complete success but at least he can walk. Randy still lives with chronic pain and limitations so he understands. I sometimes joke and say we make the perfect pair he has the back pain and I have the face pain.
I think the problem is he has never had to deal with any real health problem or chronic pain so no he doesn't understand.
I am with you mstazz, my husband also has chronic back pain (2 herniated discs, spinal stenosis and scar tissue from previous surgeries), so he also understands my pain. The reason I write this is that until this happened to me, I did not understand HIS pain. (Kharma is a b...). I remember getting so frustrated that I had no assistance in the house, that he couldn't keep a job, while I was (and still am) working two, and just feeling the weight on my shoulders. I remember mouning the ideas of things we could never do together (surfing, roller coasters, etc).
I think it's important for us to get our feelings out, and this is a great place for it, but that sometimes for the sake of our loved ones, we have to take our meds, slap a smile on our face (when THAT is possible) and pretend that every thing is ok. Sometimes when I do that, pretend everything is ok, I forget about my pain, and everything is actually ok. The power of positive thinking (and distraction)! We can be in pain, and lay around crying and focusing on the pain, or try to go on with life and not let the pain take over. I choose the later. I don't mean to preach, but I refuse to let this thing get me down, but pain is individualized, and I may not be in is much pain as some here, so I don't mean to offend anyone. I am new to TN and may have no idea what is in store for me. But I know I have pain that keeps me from eating, talking, laughing and smiling at times, and I try to focus on the good. I write lots of notes with smiley faces, and hope the meds kick in soon.
I hope you and your husband work through things Porcelina, just remember that every once in a while, they need a break like we do.
It's been said that men listen to problems to solve them, and women listen to share them. I don't know how many of the discussants in this thread can use a script like the following, but I would offer this as a starting point for dialog with a spouse who is struggling at the peripheries of your pain:
=====================
Dear Partner:
I am suffering and in pain. I know that I am not fun to be around. Both my disorder and its treatments have wrecked my desire for sex as well as disrupting many of my routine social interactions. The pain can hit me at any time out of the blue, and leave me in a bawling heap on the floor. That reality produces anxiety -- not only for me but for you. I get that.
Because you cannot put an end to the source of my suffering, I know that you must be frustrated with me at times. I hear it in your voice and see it in your withdrawals (for some husbands, "I hear it in your angry outbursts and dismissive behavior"). It is hard for you to believe that I have pain that even morphine may not fix. Perhaps you are even inclined to wonder if I am making too much of this horror. Please trust me on this: I would never invite or permit this monster in my life if I had a choice.
I cannot magically make these conditions better for you -- but I can tell you what I need to emotionally survive the thing I am going through. In part, I need you to do something for me and with me that is often hard for men. Very hard. I need you to sit with me when I am hurting so much that I cannot speak. And JUST SIT HERE AND HOLD MY HAND, with no agenda of your own and no immediate hope of helping me. I need you to GO THROUGH THIS with me, to share it rather than solve it. I need you to have the patience of Hospice Nurse, and the compassion of an engaged lover and friend, in a time when neither of us can yet see an ending to the pain.
My greatest fear is having to face this pain ALONE without you or others in my family. Your greatest positive contribution to helping me cope is not your words or even your physical touch, but your MINDFUL AND CARING LISTENING PRESENCE. Beyond that, I need you to study as you have never before studied in your life -- to understand the relatively rare kind of pain I am experiencing, and to help me monitor my own outcomes as I try different treatments and see different doctors. I need your clarity of mind -- uninfluenced by medication-- even when you are frustrated. Your clarity might make the difference between where I am now and a much better place for both of us.
I know that what I am asking is not fair. I am asking that you get over "fair" and find "fidelity" in the deepest and hardest places that a man can emotionally travel. Right now, I can give you no more than my gratitude -- and the hope that life will be better for us in the future. As I grow stronger, I hope I can once again give you joy and fun. But come what may, you will always have my gratitude for going through this with me.
I feel for you too. My relationship did not survive TN. Mostly because my ability and desire to go places and do fun things diminished so badly. It made me isolate and insulate myself because I got sick of disappointing people, breaking plans, not being able to showing up, etc. I work so I have human interaction, but I try not to talk about the TN too many ppl. If someone asks me what's the matter when I'm hurting and I tell them it's the TN, I hear things like "OMG you still have that?!" It's exhausting to try to explain sometimes.
When I was a teenager and the older women in my family would be complaining about arthritis, I would think "Ah geez is that all they ever talk about"...or something similar, wondering why they wouldn't just take some aspirin or a whiskey shot or just go to the doctor & get it fixed. I couldn't see it, I'd never had any real pain of my own for reference, and I was uneducated about it. I hate that I had selfish, mean thoughts like that. I try to remember that now through the other side of the situation and how other ppl respond to me. Participating in support places like this website helps me every day because there's understanding here.
It's been said that men listen to problems to solve them, and women listen to share them. I don't know how many of the discussants in this thread can use a script like the following, but I would offer this as a starting point for dialog with a spouse who is struggling at the peripheries of your pain:
=====================
Dear Partner:
I am suffering and in pain. I know that I am not fun to be around. Both my disorder and its treatments have wrecked my desire for sex as well as disrupting many of my routine social interactions. The pain can hit me at any time out of the blue, and leave me in a bawling heap on the floor. That reality produces anxiety -- not only for me but for you. I get that.
Because you cannot put an end to the source of my suffering, I know that you must be frustrated with me at times. I hear it in your voice and see it in your withdrawals (for some husbands, "I hear it in your angry outbursts and dismissive behavior"). It is hard for you to believe that I have pain that even morphine may not fix. Perhaps you are even inclined to wonder if I am making too much of this horror. Please trust me on this: I would never invite or permit this monster in my life if I had a choice.
I cannot magically make these conditions better for you -- but I can tell you what I need to emotionally survive the thing I am going through. In part, I need you to do something for me and with me that is often hard for men. Very hard. I need you to sit with me when I am hurting so much that I cannot speak. And JUST SIT HERE AND HOLD MY HAND, with no agenda of your own and no immediate hope of helping me. I need you to GO THROUGH THIS with me, to share it rather than solve it. I need you to have the patience of Hospice Nurse, and the compassion of an engaged lover and friend, in a time when neither of us can yet see an ending to the pain.
My greatest fear is having to face this pain ALONE without you or others in my family. Your greatest positive contribution to helping me cope is not your words or even your physical touch, but your MINDFUL AND CARING LISTENING PRESENCE. Beyond that, I need you to study as you have never before studied in your life -- to understand the relatively rare kind of pain I am experiencing, and to help me monitor my own outcomes as I try different treatments and see different doctors. I need your clarity of mind -- uninfluenced by medication-- even when you are frustrated. Your clarity might make the difference between where I am now and a much better place for both of us.
I know that what I am asking is not fair. I am asking that you get over "fair" and find "fidelity" in the deepest and hardest places that a man can emotionally travel. Right now, I can give you no more than my gratitude -- and the hope that life will be better for us in the future. As I grow stronger, I hope I can once again give you joy and fun. But come what may, you will always have my gratitude for going through this with me.