I find myself not coping well on so many fronts. When confronted at times I become less in control. I go from 0-100 and upset I cry easily from frustration. I think I am crazy. My family says I need to “calm down”. This upsets me even more. I have no patience anymore, it does come from frustration. I cry easily. Anyone having these feelings or is it just me.
You are not alone, think we all feel like this at times
Considering the ridiculous, horrid pain levels we hit and endure on an ongoing basis as well as how our lives can completely change when our TN pain is not controlled it is ONLY normal that our patience levels and coping skills go through a bit of a run around. ( to say the least)
First step is acknowledging that we’re not coping well. Forget blaming yourself, any human being who endures the above and has their life change so dramatically would need to reassess and struggle to get a hold of their emotions etc.
It’s not just the pain, it’s the emotional side effects.
LwTN doesn’t just affect us, it affects those close to us as well.
From my own experience I can tell you that it’s been a work in progress…I apologize when I’ve not reacted appropriately because of my pain, but I also explain how difficult it is to function and how intense the pain is. Communication is HUGE, I have found my family and friends deal better if I’m honest rather than those times when I withdraw into myself . I tell them I have no patience, all I can do is focus on getting through each minute of pain.
They see it, which makes it easier too.
Things that have helped me cope at times…I say at times, because I’m not perfect, I break down emotionally and find I have no coping skills and I feel lost and can’t find a positive thought if my life depended upon it…BUT things that have helped…
Reading uplifting stories of perseverance, or self help type books
Listening to relaxing music
Practicing the art of Gratitude, which helps me refocus and see the positive, even if my only positive that day was “I’m so grateful my heating pad took the edge off for a few minutes today!”
In any event, we’re going to have good days and bad days, all of us will, so important not to beat ourselves up, it’ll happen, but then we need to tell ourselves it’s ok, and be gentle and not be so hard on ourselves.
It’s a work in progress…it’s not just you sweetie!
(( hugs )) Mimi
I cry pretty easily so you are definitely not alone. The shower is my friend. It washes away tears and for some reason helps me to not get headaches from the crying what are your hobbies that help make you feel better?
It's not just you Joanne. Chronic pain can make you crazy. I think often of Oprah saying her worst interview was Elizabeth Taylor. And she says it's because Elizabeth was angry/cranky because she had chronic back pain. Then I went into a dr's. office that had the 'I hate mean people' bumper sticker on the sign-in counter. People without chronic pain just cannot understand. And I guess we shouldn't expect them to really. I mean until you felt TN pain could you have understood it? Well, that's all fine and good but our irritability is still there! My pain attacks occur literally ever 2 minutes and the majority of my trigeminal nerve have been severed. I understand your pain, anger, irritability and general shortness with everyone around you. My boyfriend recently said to me, "You should have some compassion for what I'm going through." Huh? He's healthy, working and only been dealing with my TN for a month (meanwhile I was diagnosed in 2007),....what I would give to be healthy and able to work. Ugggh Well, I can't fix it sweetie, but I understand. Vent here anytime. I find it's helpful to vent about the frustrations. namaste
I finally went to counseling a few times for TN related crap like depression - issues with husband and meds...she was shocked at how much I had to deal with and most of us counselors don't get shocked easily!
You just have to keep putting one foot in front of the other until you are on the operating table (just take breaks in between those steps!!!!!)
-- if you have to take an anti anxiety med, see a counselor, go to a pain specialist in the mean time --- do what you can for you!!!!
Do most people here have insurance? Just curious. I'm new here.
Thanks everyone for your support, do not get me wrong not looking for sympathy just empathy. I understand its difficult for family members. I have always lived this way to beable to place yourself in the shoes of another for a moment. Because pain is not tangible does not mean it does not exist. Always had great compassion for folks with mental illness. When you have illness that is treated with medicine lr surgery , folks understand this necause they see it. If someone has chronic pain, depression my heart goes out to them. So you have my attention and my empathy. Hoping all of us get well from a monster disease that is merciless.
All my best
My day consist of being thought of as a mean person. I can see its not comprehensive to someone not feeling pain all day. They just think I'm mean. But if I had no pain I wouldn't be upset. And I just don't want to be spoken to or talk all the time and after voicing it so many times to the same people I don't understand why they keep doing it with them expecting a different result! Good post. Yes I have insurance. Oh and the craziest thing is forgetting everything all the time! I was at the store today needing 4-5 things and I just got one!
I had no health insurance for ten years.... when I got TN in 2010---- I had none.
I got insurance - very grateful to have been able to cover MVD surgery for this terrible disease. Luckily no pre-existing conditions crap on that one! Who has $50,000 to do that?
Many people on here don't have insurance, and many do -- Its a crime in this country as far as I'm concerned that everybody does not have access.
Julie Spencer said:
Do most people here have insurance? Just curious. I'm new here.
I’m managing to hold out and keep the ‘mean person’ from showing most of time. What I struggle with is the crying all the time. If someone is nice I cry, if I’m watching something on telly that’s not worth crying about I cry. But worst of all when I forget my words I cry. So now because I know that I have to be at a certain dosage, most of the time, to forget my words, I just go home and sleep now instead of being in situations that upset me. That’s the other thing, I’ve learnt to just go home and sleep instead of trying to do everything that I used to do.
Hi Marcie and Thermotronica,
the pain does wear on you, hoping for some sort of reprieve from this madness. The side effects from the meds that most of us experience seem to be pretty universal. The short term memory loss & emotional instability which could also be apart of also living with chronic facial pain. I become so frustrated so easily and then comes the water falls. For this I refuse to apologize. Then comments roll. "Shes so emotional cannot handle anything". For all the daily struggles we all go through, I want to give kuddos to everyone on this site for their courage of living with this horrific and terrible disase. This is not easy .Retreating to our bedrooms with hopes of falling asleep to give us some relief from the painthat held its grip on us all day long is not new. None of us want be mean to anyone ,we are just trying to survive. Our lives have been turned inside out and we want so desperately to feel well again. its pretty simple for us .All of us seem pretty realistic in our expectations on being "painfree". For some it could be a few attacks a day with hopes of the meds keeping pain at bay. others having any surgical procedure its the same with ultimate goal to be pain free or having minimal attacks daily. As we all try to make sense of this one thing this site has given us an avenue to not feel so alone. So I would like to thank everyone here for your understanding and compassion helping me get through some of the most difficult of days. Also like to thank Ben Munoz for developing this site for all of us afflicted with one disease or another. He has given us a forum to speak to one another where others on the outside dont understand our plight. So once again Thank You Ben! To all my friends here may god watch over you and give you the courage and strength in battling your pain each day.
This thread is very helpful. I feel like I have lost my ability to cope with much and cry at a moment’s notice. For seemingly no reason! I very much feel validated by reading everyone else’s testimony. Thanks to you all for sharing.
Your very welcome Mel. Its such a trying disease. It creeps up on you when you least expect. The emotional toll it has played on us is immense. Each day I awaken is a joy because for thise 15-20minutes I have no pain. Who would have ever thought I would be a morning person LOL. I truely try as difficult as it is not to cry for me it makes it worse. I know that I am more emotional than normally am, but it angers me to apologize anymore. I realize that seems harsh but its my coping mechanism. I can only protect me. I cry out of frustration I allow it to build and build and then all bets are off. I do retreat alot and maybe its not the right thing to do but it makes me regroup. Some people meditate and some may listen to music I just go to sleep. Sleeping keeps me pain free for that period of time. I have had to make major adjustments in my life and the life of my family. I realize this hurts them to see me this way but I would rather remove myself from the situation then to have them keep asking me are you okay? Is their anything I can do for you? They know I love them and it has worn me and my family down to the core. Trying to make the best of a terrible situation . i hope sharing this may help others . Validation is huge and helps me to cope. I think as we continue to talk and educate ourselves about TN gives us hope that someday they may truely find a cure from a horrible disease that has afflicted far too many. Wish you all the very best and thank you for your undeniable support!