Living with TN and the emotional side effects

General General TN & GPN (Old Site)
1

Those of us living with TN live, suffer and have to deal with horrendous PAIN.

We miss days, weeks, months of work, sometimes having to lose the ability to commit to work altogether.
We miss the ability to do and be all that we were before TN entered our lives.

We initially make plans as always, volunteer work, activities with our kids, families, dates with our friends, only to soon realize we can’t make plans at all as the fear or pain of TN can rear its ugly head at any time.
We let people down. ( at least that’s how it feels)
We Are overwhelmed by the pain.
We are frustrated with our care by doctors, specialists.
We take heavy duty meds that take time to work, during which we’re drowsy, grumpy, not feeling ourselves.
Each relapse of pain has us going through this several times until pain control is reached. ( or not )
These meds cause all sorts of side effects, make us loopy, forgetful, unable to remember normal words during a conversation, we feel stupid, embarrassed.

Then we feel guilt for having to rely on others, spouse, parent, child, friend, family to do what we can no longer do for ourselves.

EVERYTHING changes…
Sometimes we lose our sense of who we are other than TN sufferer…
Our close family & friends feel helpless and wish they could do more…
Ours for the most part is an invisible disease, and not well known. Sometimes we can feel like we are constantly explaining to others, we don’t “look” sick, so we feel like people around us think we’re making it up.

We feel lonely, isolated.
We try our best.
We research, join support groups, journal, Pray, meditate, seek alternative therapies and we hope…we lose hope, and we hope.
We hurt, our face hurts and our hearts hurt.

Those of us lucky enough to have successful procedures OR long term remissions KNOW what it’s like to live again, we are appreciative of the days that allow us to function once again!
Always though, there is that fear that it will come back…

TN hurts beyond our imagination’s capabilities to accurately describe it.
Emotionally the side effects are many.

Last night my 14 yr old daughter crawled into my lap like when she was little, arms around my neck, sobbing, she was worried and sad for me, feeling helpless and said she misses the Mom I used to be.....She misses my fun loving, social, laughing, HAPPY self.

My heart stopped for a minute.
I mean,I knew this past year had been incredibly hard, I've lost a sense of who I am, I don't recognize Me anymore.
And I know it has affected my family.
But I was so sad for my daughter in that moment, and so apologetic.
"mom it's not your fault, don't apologize"
But I do, and sob with her....

You see I am home, we are close and talk all the time.
She wasn't complaining about my parenting skills, she just wants her Mom to be happy again.

My heart broke in that moment.

I try so hard to be positive, I don't vent in front of her, I try to hide my pain and discomfort as much as possible but of course she knows....I'm not fooling anyone apparently.

My daughter needed to voice her fears.
My husband and I spoke with her and encouraged her to keep talking, sharing her feelings with us as well as with her friends.
we reassured her and validated her feelings and just hugged and cried .

I'm devastated,as a parent I feel as though I've somehow failed in a small way, I know, I know....I'm a good parent, I just wish I could have prevented this from affecting my kids as much as it has.

The emotional side effects are many.....

Thanks for listening.....
Mimi
2

I remember these vivid feelings - more directed at new hubby than teen son who is somewhat oblivious.

Sitting at my new job - wondering how long this MVD remission will last

Wondering will I be long-term OR forever unemployed again?

I couldn't even volunteer on meds and lost my entire identity.

Wondering how long will I be ME -- although ME is a somewhat different version than pre-TN

Just because I can now go to work, I still have depressive feelings, PTSD, wondering how to see my old self More Often

I see glimpses of her

My support system is great

But I am forever changed either way

Coming here helps!

my face tingled a little bit yesterday, what was that?

I had an ear infection - will my TN show back up after that -

My bottom lip has been numb on and off for a week -- I am at the 11 months mark post MVD

I can't believe the post-stress

Remission is only physical for me for now

3

“wondering how to see my old self more often”

Exactly KC!!
Coming here does help, so much…

4

Great Story Mimi. I need to read this, this morning. I have had a horrible few days. I've cried until I can't cry anymore. Asking...why me? I woke up this morning and told myself...God isn't going to put me through more than I can handle. He knew I could handle this and that is why he chose me.

KC Dancer KC....I asked my husband yesterday (of 2 years) why would you want to deal with this the rest of your life? He said "when I said I do, it was for the good and the bad" That made the entire day worth it. Me, him, and our son (I adopted his son) laid in bed last night and we watched videos and read articles on TN. I want them to know about it. Our son just laid there and hugged me and kept telling me he loved me. Life may be horrible some days...it just doesn't get any better than that, though!

5

Mimi, Thank you!

I have only had TN2 for 6 weeks but everything you said here already tears at my heart. I have always been the one that made my 3 daughters laugh. I try to have them and son-in-laws and grandchildren over here for dinner at least a couple of times a month. It was my most fulfilled joyful moments.I am scared to death I will never feel like having them all together again, let alone cook for them. I fear this not only because of the gnawing pain but because I feel like a space cadet as I try to focus on conversations. It is disorienting to have noise and conversation!

I want my grandchildren to know and remember the funloving, giving Mommaw I was 7 weeks ago.As I write this I can't imagine having this when my daughters were young. It is wonderful that you are communicating with your daughter and allowing her feelings to flow and be shared!

I hope you have a joyfilled day today,

Yvonne

6

Yvonne, we still gather around the table for family meals, we still have friends over, it’s just that sometimes I’m not cooking, or participating as much. I still laugh, goof off etc
I guess my general overall happy go lucky self has been replaced with a more cautious, lower key personality. You will still have those precious moments and be happy.
My daughter was referring to my past year…

A year ago I was working part time, doing groceries, driving my kids around, power walking, going to the gym etc
I actually started having vertigo, so bad I had to go on short term disability, I thought we’d find out what it was, fix it and get back to life.
My TN was controlled at 800mg Tegretol.
Almost a year later, I am still at home, long term disability, still dizzy and imbalanced, and I’ve had two TN relapses that now have me on 1600mg Tegretol and 600mg Neurontin.
I have gained 25lbs, can’t do any kind of aerobic activity, NOT allowed to drive, homebound,
Many tests and different remedies for dizzy stuff and nothing.
My lasts inner ear tests showed abnormalities, so I’m waiting to see ENT for results and hopefully a FIX.

When you take someone social,independent, busy, active and then confine them to their home unable to function most days throw in the TN pain relapses well…and 25lb weight gain =unhappy miserable person.

I try, each day I try to find good, and be grateful, some moments are better than others…
For my daughters I try even harder…
And I pray that soon I will be able to function again and participate in life…

((( hugs ))))

7

mimi, i just read this over again. i cant get over the fact that someone else wrote this and not me. the first time i read it i thought that maybe there was a new program i was unaware of that automatically types up your thoughts. yesterday, i took some narcotics that the doctor had given me. i dont like to take meds to begin with other than the ones i have no choice. she gave them to me saying," do you want to spend the rest of your life trapped in your hous or take something that will at least allow you to enjoy life a bit even if you are slightly altered"? it was a beautiful sunny day and the wind was pretty strong, blowing the beatiful fall leaves on the trees around. i usually just look out the window or go with my husband in the car and i sit in the car and people watch as he goes in the store. yesterday i said screw this, pardon me, and took the meds, waited till they kicked in and went to the cemetary 1/2 block away. at first i was so nervous to let the wind hit my face. normal response. i put my face full on in the beautiful sun and warm breeze and cried my eyes out. im sure if anyone saw me they would have thought i was greiving a loss being in the cemetar and i was, the loss of who i used to be as you said. the fact that i have to be drugged to enjoy something i use to take for granted. NATURE! it felt so good. i had pain off and on but i didnt care so much. i relaxed myself and walked up and down the rows looking at all of the unique stones people had placed for their loved ones. it was a safe place for me to go. quiet, peaceful, no cars to hit me if i lost my balance, no loud people, no ciggarette smoke. i did run into a man walking his dog and the dog would not go with him until he let him say hello to me. i went over and the dog laid right on her back hinted that it was okay for me to rub her belly, so i did. she was a lovely soft golden retreiver. i did some more walking which felt so good to do. i have been very inactive since my pain has increased lately. i sat after a while and just enjoy the sun on my face anf watched a dad across the street on a baseball feild flying a kite with his little boy. it was the best ive felt in a long time except the fact that i was still alone. which is how i spend the majority of my time because it is when i have the least amount of pain. im in some pain now, writing this because i cant see on this computer and i cant wear my glasses, they cause me big pain. so im sure there are many errors in this and i do not bother with caps and everything do shorten the time it takes me. anyway, when my daughter got home from school she asked why i was crying and i told her i went outside for a walk and i just wanted to be normal and be able to laugh and be goofy with everyone the way i used to be. i try to hide it all from my family as well but every now and then it just rises to the surface. im tired of being sick and im tired of being tired. im tired of everything revolving around TN. i must go as i have caused way to much unnecessary pain for my self. we do have so much in common it seems and i hope we can be a source of encouragement for each other. Jacqueline

8

Thanks Mimi,

You gave me a great gift with your post. I don't feel alone anymore, there are people who understand. You have helped me more than you will ever know.

9

Mimi,

Thank you for that beautiful post. It makes me feel less alone also. I'm about a year and a half post diagnosis, and last year was absolutely horrendous for me. I could never imagine that kind of pain. Then I had remission for about 3 months and the pain came back. I couldn't get the meds cranked up fast enough to keep up with the pain, but it wasn't as bad this time. I take gabapentin and baclofen, which cause fatigue and off-and-on depression, not to mention difficulties with confusion, finding words, forgetting EVERYTHING, etc. But it beats the heck out of constant pain, i.e., eating, talking, smiling (just about anything involving movement around the mouth & nose). I was thinking about it just yesterday ... even those that are concerned (parents, spouse) soon just forget about what you're going through.

10

I was hesitant to write the post, but my emotions of seeing my daughter so hurt and worried about me,over took me and compelled me to write.
This is a safe place, a place where others truly understand each other. That is soooo comforting.
I too feel very lonely, I don’t think I ever really understood the word alone before now, I am so grateful for this forum.
Kind of fitting seeing as its Thanksgiving weekend here in Canada.

THANKYOU to ALL of you who help me feel less alone with my pain and emotions, thank you for understanding and by sharing your stories,helping me to get through another day.
((hugs))
Mimi

Ps Jacqueline,
so happy for you that you had that day in the cemetery, sounds like something I would do, made me smile.
Cyndi, I hope you’re doing well.
Rick, we must all lean on each other, somehow it’s easier to communicate our feelings here sometimes, with strangers who truly get where we’re coming from. Thank you for your kind words.

11

Mimi, a beautifully written discussion. Hoping for better for you soon.

12

wow, brought tears to my eyes-because i know your pain, i identify with your feelings. I wish i was me again for my kids more than anything. thankyou for posting ps-your are a great mom!!

13

((((hugs)))) thinking of you. thank you for the encouragement! blessings~~

14

oh mimi, that was the saddest thing i have ever heard, but describes TN to a tee....... my life too has changed since TN, i have forgotten what its like to live normally.

my husband is wonderful, but he cant stop the pain, i dont think anyone can. i am going to have the operation,MVD it cant come soon enough for me..... but on the other hand i am scared, could it make my pain worse? surely not, how could it possibly be worse?

i am so sorry for all of us, dont know why it has happened, thank goodness for the site, its a great help. thank you for your letter, and thanks to everyone for caring. love to all. hope you have a pain free day anne

15

Mimi, I just read what Lori what said...and I agree. You sound like an awesome Mom. Your daughter is very blessed to have you...TN and all.

16

I think you just described everything I've been feeling, although I've only been going through this a short time it's already started to completely turn my life around, and I try to talk to people but most just think i'm overreacting. It's hard. But so far I'm just trying to enjoy my good days and get through the bad as best as I can.


It sounds like you've been really suffering, not just physically but emotionally and I'm so sorry for that. I'm so sorry for everyone who suffers with this. You sound like you have a wonderful and loving family. I'm glad you have some support. And I hope you can one day feel like yourself again. Just like I hope for myself and everyone else. Thank you for posting this.

17

Thanks everyone for your replies to my post, I wasn’t expecting any when I wrote it, I guess I just needed to put words down…
I do very much appreciate the validation, it’s not just me feeling this way.

I knew that, I guess it just helps to hear it.
I’m ok, and I will be ok.
But part of having TN and other chronic pain/ disease etc is acknowledging the bad days, working through or with them and enjoying the good days, moments as they come.

I hope we all get more good in the days ahead!
((hugs)) Mimi

18

Mimi,

Your powerful words capture what we all feel and the guilt of putting our children through this. I have watched our boys grow up so much this past year and am so proud of them but also feel sad that they may have lost some of their carefree childhood.

Thank you for capturing our thoughts so powerfully,

Jonathah

19

Oh girl...you hit the nail on the head! Great writing; I understand EXACTLY. I appreciate you and appreciate how you so eloquently wrote how we all feel. Wouldn't it be so nice to be the person we were??? I remember that person also and wonder "why" too - but I also thank the Lord that I am STILL here, regardless of this infernal disorder. We all feel like 'skipping out of this world' a few times...but...we ARE still here for a reason. - hoping and praying you (and all of us) have better days...God bless you!

20

Mimi,
I was browsing this site and searching for a way to prevent myself from becoming totally isolated and your post is the reason why I joined. So thank you for putting into words what no one around me understands. And thank you for allowing me to read your personal feelings. I feel very blessed to be a part of this community.