I know this post is going to make me seem full of self-pity but I am so annoyed with my family and coworkers. When my TN came alive again for the first time in several years in 2008, it was my husband's first time to be exposed to it. He was very sympathetic and supportive, and scared. He would sit with me, run interference with the kids, advocate for me with the doctors, and took off work to take me to the MRI b/c I was so afraid. He eventually got angry and afraid b/c I was on so many different pain medications; he is an addict in recovery and afraid I would grow dependent on them. As a drug and alcohol counselor I was afraid of the same thing. When the TN went into remission or stopped bothering me around the clock day after day, I stopped taking the pain meds. It started hurting again, day after day, a week ago, and I have avoid the opiates so far b/c quite frankly I do not want to take them. I have suffered through so far, trying the prescribed meds and waiting as long as I can b/c I cannot function at work and doing my master's program work in a drug-induced fog. The Topamax impairs me enough. As I type this, my face is contracting. I just tried to eat something...hunger happens, you know?
Anyway, my complaint is that this time, my once-supportive husband has acclimated to the pain I endure. He tells the kids in a flat affect, "Her face hurts." He mentions to friends who call that my face is hurting again. It has been two and a half years since I have endured this, and while I have been blessed by this he seems almost bored with it, or as if he has resigned himself to my fate. There has been no expression of regret on my behalf, or sadness. It is not as if he has implied he is annoyed by the inconvenience but rather that he is not too concerned. I don't want him to fall down in the floor and bawl about my pain, but it sure would be nice if he would express some damn empathy, you know? And the people at work...while some of them recall what it was like the last time, others who were not present seem skeptical, as if me sitting at my desk doing Lamaze breathing and massaging my face is about attention-seeking behavior rather than genuine pain and overwhelming desire to escape the radiating heat and searing discomfort gripping my face and forehead, like I could make this stuff up. I told one guy who seemed to be smirking that it was as if I am giving birth through my cheek; he looked taken aback and I was glad.
I realize because I am a counselor that my pain feels like weakness and vulnerability and that I do not like it that I want their empathy. I also realize that their skepticism and even their doubt in my discomfort feels wrong and embarrassing and is hurtful. I guess it hurts my feelings that they do not realize how genuinely real this condition is, and that it is not about manipulation gain sympathy or an attempt to avoid responsibility. They need not feel sorry for me, but to convey doubt in my pain is not necessary either. I am not drug- or attention-seeking. Rather, I am overwhelmed with physical pain and fear of when it will end again as well as when it will occur once more. OK...I'll climb off my pity pot for now...thanks for listening to me whine...
You just need people to understand you. I try not to mention when my pain strikes, it is very hard to just sit there in pain. I am lucky in a way because I am now retired. Though I know exactly where you are coming from, my old boss thought it was similar to a headache. He could never understand why I had a operation for it. Though my pain free days only lasted 2 years they were wonderful years.
Unless people have experienced this pain they will never understand it, in my opinion it is worse then childbirth.
I could never begin to explain to anyone just how bad it is. It goes off any scale, out of a scale of 10 I would give it 20. 10 is when it eases.
I am afraid I take what ever drugs the doctor offers me, I can't stand this pain. My life is slipping away I am now in the autumn of life I want pain relief, I want to be able to talk and laugh with my children and grandchildren, my friends.
Take the pain relief, you can not take the pain, it really is beyond any human endurance.
I agree with Margaret about the medication. How will you be able to live without medication? I only take anti-siezure meds, but I take more than one. I have Percocet but cannot stand it. . the hangover it gives me, so I only take it if I need to pass out. I do understand what you are saying. I feel like "Are you LISTENING to me?" Cold weather kills me. It was 8 degrees yesterday. If I step outside, I would have been done. Someone wanted me to go to an event where I would have had to park and walk a ways outside, but the event was inside. . what was the problem? It is 20 degrees warmer today so I should be good. The shift is hard on me too. Like I am making excuses to stay home. What I wouldn't give to not be home days in a row. And yes, my family seems to get bored with me and my illness. So see, you are not whining. Many of us feel the same way. But they cannot understand because they haven't experienced it. I can remember being judgemental of people with kids and their parenting. Then I had kids. I am a lot less judgemental of anyone, now. I just keep trying to remember that and just know they are not being mean, they are just not formally educated, so to speak. Hang in there. Oh and Topamax? EVIL! I take it, too.
It is very difficult to deal with TN. We all know it. But those who do not have TN will never be able to understand the pain. I am fortunate because I do have friends and family and co-workers who are wonderful. They jump right in and help me with my work and don’t seem to mind when I call in or when I’m late or when I have to go home early. Their concern is that they don’t want me driving and they want to take me home. But I’m not married. One of my main concerns is putting a spouse through this should I get married. I am fortunate that I don’t have children at home. I really don’t see how I could have taken care of a child two years ago. I had an MVD and it did help tremendously. But I still have my days and sometimes weeks but not like I did before.
My mother and brother were here for a couple of days. They just left about an hour ago. Thankfully I had good days. They really didn’t see me in pain but they saw some side effects especially the drowsiness and my memory issues. But I’m thankful they didn’t see me in a lot of pain.
And the anxiety of the pain coming back or getting worse is overwhelming. I try not to think of that. But I am in a different place now. I’m not experiencing the very severe pain like I did two years ago.
I’m sorry Amy. WE know how you feel. And I think most of us have our own pity parties.
But we don’t have answers. I hope your doctors find the right meds/treatment that will work for you.
Ironically, I don’t think any of us would want anyone we hate, let alone anyone we love to really understand what we feel. I guess I just would like to trust that they trust me when I say I can’t. Last night my husband went to kiss my cheek. In the last few days the pain has started to occur on my right side too. Previously it has been only on my left. Now, my right side is intermittently affected but he acted skeptical when I said my right side too and please don’t touch my face. I told him calmly today that it has started to impact that side b/c last night I did not have the energy to tell him. I take the pain meds when I am not working on school stuff, running after kids, or working. I simply cannot do what I do for a living, or study, and be under the influence. It doesn’t work that way. And I hate the nausea and sleepiness. I keep thinking if I fight it I will win. Last time I had an occurrence I was out of commission for so long. I don’t want it to be true…I haven’t accepted it yet.
