Question for the long-term sufferers

General General TN & GPN (Old Site)
1

Have you find peace in your life? A reason to be here? I can’t, I’m struggling with this so much. I’ve been in such denial for years now. I could easily explain TN, talk about the different causes and treatments, discuss the pain, and I’d say it with such conviction. But now, going on 10 years with this thing, I’m losing my mind. I don’t know how to handle this; I hardly believed myself when I’ve talked about this, and it seems these last few months, I’m starting to understand just how serious this is.

I need to find a way to cope. I hear these stories about people who are sick, even dying, and how they are smiling every day and still optimistic. I want that. I want to smile when I wake up in the morning again. I want to offer hope, instead of feeling sorry for myself, but I don’t know how to get there. I don’t have any hope.

2

So sorry to hear about your long term struggle. It must be incredible weight on your shoulders. The two little thoughts that came to my mind was to objectively start recording from a scale from one to ten your pain and your sense of hopelessness each day at the same time every day. I am wondering if kicking in your rational mind might bring some revelations as to how to continue the fight. I notice that when I get down I feel as though I have always been down but that is not true. There have been cracks of sunlight. But somehow when I am down I forget about any joy I might have had. You have reached out to our community which is a brave and powerful act. The other thought I had is maybe try just to designate one act of kindness to someone every day. I know you do many every day. But just do one that you specify your act of kindness for the day. Forgive me if these ideas seem petty. They just flashed in my mind, so I wanted to be sure to share them with you. Sending you peace and love. Tina

3

I try to stay distracted. I don't let my pain control my day. I'm interested in what my kids are doing. In fantasy football and following my beloved Browns. I've had failed MVD surgery and my meds just take the edge off. I don't think anything can be done to improve my condition right now so I'm trying to ignore it. That's the only advice I have for you . Stay busy. Stay distracted. Find something else to obsess about.

4

During my lengthy remission from TN, as a busy wife,Mom, volunteer and working part-time for an airline I used my time to read up on how to live in the present moment, studying Buddhism, meditating trying to slow down etc etc
Ironically when my TN came out of remission and progressed becoming med resistant, my choices were no longer my own…I had to stop working, (ltd) my ability to function dependant on the meds or the pain, I had to be present in the moment…couldn’t plan ahead etc etc
I now live in the moment,it’s a conscious effort every waking hour.
If I try to look ahead, I lose hope, I feel depressed, I think I’ll never be “normal” or live “normally” as I once did, I mourn the loss of my job, my independence etc etc…
I have a husband, 2 beautiful daughters, my mother, my brother. Extended family and friends who all need me and I them.
THAT’S my reason to be here.
Don’t be fooled…I still cry, rage, vent get depressed etc, etc.
That’s normal behaviour, considering our circumstances…
We just have to take each moment as it comes and allow ourselves to feel all the emotions good and bad.
We have no control when it comes to the TN,but we do have control over how we react…
We have to make a choice every day…some days I choose to wallow in my misery, other days I choose to be happy and hopeful.
It’s so important to take care of our mental/emotional well-being…
One day at a time, together with hope for a future that includes a cure!
((( hugs ))) Mimi xx

5

I can relate to this sooooo much right now!

6

I have sent a friend request so I can maybe help?

7

Hi Danielle. Thank goodness you have found this site. :) I had it for 8 years and to be honest there were times I prayed before I went to sleep that I would just stay asleep as that was the state where TN would not make an appearance. People here "get" where you are right now. TN is insane-making. It is like large portions of your life are on-hold until God knows when. Please don't give yourself are hard time for being a bit self-pitying. You are suffering and it's totally ok to feel sorry for yourself now and again. I let myself cry and sleep as much as I could. I read a lot. Distractions, distractions, distractions. And most of all I pestered every GP, specialist and surgeon I could afford to get to until I got an MVD done. I am very lucky that so far it appears to have worked. If TN returns, I will be back nagging everyone I can to help me. I wish I had better advice for you, I really do because I get that sense of hopelessness. Please come here as often as you need to. Everyone here knows what you are going through. :)

8

I ask myself that question, "I need to find a way to cope" about 100 times a day.

you not alone in feeling defeated.

I wish you all the best!!

9

Hi Danielle
I’m with Mimi. I took the Buddhist route (many years ago before TN, during a more emotional crisis). I find reading a passage from an authentic spiritual book or on-line can set the tone of my day. I just keep coming back to it over and over again.

I also agree with the distraction route. Try learning a new skill, something you may once have had some passion for. Just a little, every day. These moments build.

Keep Heart
Bellalarke

10

I will second that Mimi said it all so well! And I have had many a day feeling just like you are. As most know, my husband at 52 is now permanently disabled, he was in hospital for 2 1/2 years and there were days I wanted to scream can someone help me, here I am at the hospital and in dire pain...looking back not sure how I got through it, but I did, for him and goodness knows all he has been through. I am his caretaker as well as wife and again, days I look at his prosthetic leg, the wheelchair, the dialysis place and I say this is not fair, my TN is not fair, I get angry...but ya know what I realize as well, anger and hopelesness don't change a thing. Don't get me wrong, I have my days and we all need pity party days, but try to always get back up. I have had TN a long time as well and while I hate the expression, a day at a time is the best way for me. If I think too much about the future I get down and none of us know what the future holds. And for me, my pets, 3 Saint Bernards and 4 cats are truly my sense of peace, pain or not when I look into those soulful eyes, feel their sweet touch, feel a happy purr upon my lap, win at a dog show being so proud to be their mom!...those are my moments of joy! We had a PetFest here this weekend, hundreds of dogs, it was a blast, still some pain, but a total escape of thinking about nothing but all the attention my boys were getting and what fun we all were having. I treasure those moments, because there are days I just give in, I have too when pain is too much, but I give myself those days, sure there is part of me that feels guilty for not being productive, but I try to not feel that way and know it is what my body needed to do that day. I do, indeed need to continually work on anger management, lol, needed to do that before TN, safe to say I have a bit of a short fuse. But I read self help book, take moments just to breathe, pray and besides pets I love to garden. It is hard to accept TN, but try to just relax when you can, don't think too much of doom and gloom, think good thoughts, be good to you. I posted a few days ago because I was having a tough day, I liked the suggestion of giving myself gold stars for any task I did that day, grin, took me back many years to school days, but it helps, focus on what you can do! My hubby is an inspiration, all he has endured, losing his life time career, etc. He stays positive, on my bad days I kid him I am going to slap his smile off his face, but I have learned a lot from his courage and positive attitude. And most of all know you and your thoughts are not alone. We all care about each other, posting always helps with people who understand. Know you are very cared about. Sending you a gentle hug and you will be in my prayers.

Betsy

11

Betsy, where are you from ? There was a pet fest here last weekend too I believe. I’m recovering from surgery number 3 right now so I couldn’t go. I volunteer at our local shelter, so animals, especially dogs, are my escape as well. When I’m healthy enough gardening is my other passion! Sounds like we have a lot in common.
I’ve been really struggling a lot with this recovery, and having tn in general. I’m only 33 and I’m single, living with my parents, unable to work or go to school, and sometimes I really feel like I missed my chance to fall in love and get married and have kids since this hit me about two years ago. Looking too far into the future is really awful for me sometimes as well. I try to imagine positive things for the future, but it is REALLY hard sometimes.
I met Bellalarke through this site and she has become somewhat of a pen-pal for me and that has really helped me more than she probably even knows. I know I always have someone I can reach out to who understands what I’m going through, and I hope she feels the same. My parents are angels, and my mom especially really tries to understand my pain, but it’s just one of those things that if you haven’t experienced it yourself it’s just impossible to really understand.
Oh, I have taken up crochet and that has helped get my mind off things. I was able to crochet a baby blanket for one of my friends who is pregnant just before my surgery. I’m working on one for my best friend now. I have all kinds of requests for blankets from friends now so that’ll keep me busy.
I think one of the hardest parts of chronic pain is watching friends slowly disappear. When you first get diagnosed everyone wants to come see you or send something. By the 3rd surgery (6th procedure) nobody comes by. Two friends sent some flowers at least. Hardly anyone texts or calls anymore. It gets sad and lonely. I understand though. I can’t get out to do anything right now, and it’s no fun to see someone in pain.
Here I go, rambling down a sad train of thought. I’m gonna get back to my distractions so I don’t start crying. I hope everyone has the best day they can today.

12

Oh my how I understand, I have watched friends fade faster than I can say through my TN and the ordeal with hubby, yes at first you are surrounded, then suddenly, hey where did y'all go! Glad you have supportive parents! I am in Houston, TX, Spring, TX to be exact. I would love to and be happy to talk with you anytime, I don't get my e-mails on my phone, but anytime you want to chat or text, 713-412-6255 or just let me know you sent an e-mail. We sure do sound like we have a lot in common and please, please, don't think TN has taken away the chance for you to find love, don't let it do that, there is someoneout there that would understand, we are all loveable, each in our own way and TN can't change that! I used to crochet when I was young, it is really fun, 40 years later I stil have the crocheted blanket my grandma made for me when I was 7 :) Hang in there, know it is tough, here for you always!

Betsy

13

I had a suspicion we were close when you mentioned PetFest! I’m in Conroe and we are building a new house in The Woodlands (well my parents are lol) to accommodate me living with them a little more long term than we first thought. It’ll have a full sized second master bedroom for me.
I volunteer at Montgomery County Animal Shelter when I can. I’m not recovered enough from my most recent surgery to do much of anything unfortunately.
It’s great that you are so close and we have so much in common! I wish one of them wasn’t pain, but this is the hand we’ve been dealt!



Betsy Carlson said:

Oh my how I understand, I have watched friends fade faster than I can say through my TN and the ordeal with hubby, yes at first you are surrounded, then suddenly, hey where did y'all go! Glad you have supportive parents! I am in Houston, TX, Spring, TX to be exact. I would love to and be happy to talk with you anytime, I don't get my e-mails on my phone, but anytime you want to chat or text, 713-412-6255 or just let me know you sent an e-mail. We sure do sound like we have a lot in common and please, please, don't think TN has taken away the chance for you to find love, don't let it do that, there is someoneout there that would understand, we are all loveable, each in our own way and TN can't change that! I used to crochet when I was young, it is really fun, 40 years later I stil have the crocheted blanket my grandma made for me when I was 7 :) Hang in there, know it is tough, here for you always!

Betsy

14

Thank you, everybody. I apologize for not getting back sooner to your replies; in all honesty, every time I post here, I have to be prepared to cry at all the responses. It’s overwhelming when you realize your not alone, and that others think the same thoughts. Maybe because, well for me personally, I’ve never met anyone else in person who has this. And every doctor I’ve seen, I’m treated like a special interest case because they never get many with this condition. So, I really have no-one to talk to. I have no one that I can just call up and vent about the pain and about the frustrations that come with it, because no one understands it or really gets it.I mean, I’m sure I could call a few people in my family, but by this stage it’s old news and they no longer say anything much. What can you say to someone you care about who is suffering every day, knowing there’s nothing you can do about it? That must be tough, the position our loved ones are in… Feeling this way makes me feel bad, but at the same time, it makes me feel that all is not lost. Because obviously I still care enough that I can preserve a sense of empathy and understanding. Here I am, dealing with a life-altering condition, and I’m worrying about how my husband and mother and sister are handling it!

15

I have to agree Danielleq, this forum is the most awesome thing. I can't image going through TN alone. I would be crazy with fear and desperation if I was going through this alone. Even though what we go through incredible pain and frustration at least we are not alone. That is why I feel even positive about people being down and out on the forum. To know that we can help people just by listening and responding as a fellow human being. Also I feel we build our thinking and survival muscles by responding to others with our creative strategies for survival. By keeping our creative survival muscles exercised we can be ready to respond as best we can to our own challenges. I am not into other online social media but this forum fits me. Sharing our pain and moments of sunlit joy is what it is all about. A big virtual hug to all my TN friends.

16

After 18 years of dancing what I call the TN dance, I try to stay involved, even if it is through social sites like facebook. Sadly, the city I live in is #8 in the entire United States for it's high rate of suicide. Using the story of how I almost went over the rail at a suicide "hot spot" bridge here, I have been bring awareness to TN and to the suicide issues here. Most of my work is done through FB. It gives me the feeling of doing some good and TN education at the same time.

17

I very much enjoyed texting with you...would it help give you hope to have a new friend that really needs a friend that understands :) Lets think long term a little, I use to volunteer at that shelter, years ago, but maybe we can think positive that down the road we could do it again! I had tried to start a support group here because I know there are others in our area, but didn't get response, which is okay, but think it would be a neat thing. Right now just focus on recovering from surgery, looking forward to the new house (love The Woodlands) and enjoying the love of your fur baby, Abby! Glad you posted, having a rough stretch myself and the replies have helped me as well! Gentle hugs,

Betsy

18

It was so good texting with you too! I’m going to TRY to go to Wednesday night dog walking at the shelter tonight. I need to get out of this house and feel like I’m doing something worthwhile or I’m going to go crazy.
Feel free to text me anytime! My mom and I were talking about getting something going to help people in our area suffering with this, but it’s hard to know how many people around here have this. I have a childhood friend’s father in Austin who contacted me after my diagnosis to let me know he has it too, so that’s three of us lol



Betsy Carlson said:

I very much enjoyed texting with you...would it help give you hope to have a new friend that really needs a friend that understands :) Lets think long term a little, I use to volunteer at that shelter, years ago, but maybe we can think positive that down the road we could do it again! I had tried to start a support group here because I know there are others in our area, but didn't get response, which is okay, but think it would be a neat thing. Right now just focus on recovering from surgery, looking forward to the new house (love The Woodlands) and enjoying the love of your fur baby, Abby! Glad you posted, having a rough stretch myself and the replies have helped me as well! Gentle hugs,

Betsy