Pure Fustration at times

[sbrn]

Talk about being frustrated with having an AN and awaiting surgery and people around you not knowing how to act or trying to make this thing less of a big deal. I get tired of being told everything will be fine when I know that it wont be fine. I am unsure how people think SSD and at least what I hope is only a little loss of balance is fine. Not to mention the rest of the complication that can occur during the surgery and recovery. All I ever hear is listen to the doctor do what your told at everything will be OK. Again no I do not feel everything will be OK. I have way to many what ifs that run through my head. I know they dont help at all but regardless they are there. I get tired of people at work telling me how well I am taking everything and don't seem to be stressed at all. Being in the military you are taught to be that way. What would they like me to do?? Tell them I feel like crap no matter how much I sleep I always feel exhausted, I hurt in my shoulders constantly which I guess is from the stress. That I dont really feel like doing anything most times except watching tv or playing on the computer ( on the plus side atleast when I force me self to do something I seem to find more energy)  Plus when I am asked you can always tell it just a trying to be nice reaction because if you do tell someone how you are really feeling they quickly change the subject. I hate the waiting for the surgery next month and cant wait for it to get here and be done but on the flip side I sometimes think I don't want to have it done because of possible side effects. Sorry to rant and vent but I feel that alot of folks here have had the same feelings and issues and would understand my point of view.

[Tod]

Yep. I understand. I'm sure others do as well.

Waiting is bad enough. Waiting combined with the stress created by fear of not only the unknown, but the known possibilities, can be debilitating. The well-intentioned wishes of others who have no understanding of what you are going through often seem fall flat.

Years ago, I was in the US Infantry, and yes, we were taught to suck it up and keep going. But you do something with all that emotion and pain and fear that you "suck up". It doesn't just go away. I found what helped me was to work on being very planful and making sure every possibility I could imagine was covered, and that included contingency plans at work and home in case things went really bad. I also spent time preparing people for how I would likely look post-surgery because of facial paralysis and being clear about my limits.

I also wrote a lot about my experiences and thinking.

All of this allowed me to relax and resign myself to the process knowing I had done what I could. It was good that I had done what I could since things did not go as anticipated and I ended up with a much different journey than I expected.

That's my story. I don't know that anyone can tell you how to make things mentally better right now. All I can do is suggest, by example, what worked for me.

Then again, maybe it is simpler to ask: how do you feel now? Did letting this out help? I gotta tell you, sometimes a really good rant can help.

-Tod

[epodjn]

Tod's right. A really good rant can make you feel much better, at least for a little while. And this is the place to do it. I'm not military but I "sucked it up" too. Everyone thought I was doing so well, but I wasn't. Then I found this group. Rant all you want here. We know how it is and understand.
I was a lot like Tod. I planned, organized, and prepared. It made me feel a little more under control. Once you have done all you can do you just have to let it go. One thing I have learned is that somehow it all works out. Not always how you want, but it works out. I dreaded paralysis. My doctor told me not to worry because it wasn't going to happen. What he couldn't see on the MRI was the tumor was ON the facial nerve and the only choice was to sever the nerve. But almost 2 years post-op and with lots of Neuromuscular retraining I'm at a HB3 and tomorrow i'm having my picture taken and I feel pretty good about it. Is my life back to what it was? No. Do I miss blinking, and a normal smile, balance, hearing. . Yup.  But I have learned things on this road I know I could not have learned any other way. Take a deep breath, take a walk in nature, one way or another, it's going to be ok.

[Lizard]

I did the same thing as Tod and epodjn, I'm a bit of a control freak anyway so it helped to appease my nerves.  I also took some anxiety meds when it was really bad. Try to keep busy, and do some of of your favorite activities with your most favorite people even if they don't quite get what you are going through....
hang in there,
Liz

[Funnydream]

Main issue is its all on the inside. And people see you as being fine. You talk fine, you look fine, you do everything else fine. So it looks like a duck and talks like a duck. It must be fine.

But on the inside its a nightmare. Something about the hearing loss is more emotional that it should be. And the tinnitus to boot. But that's really not that bad. I'm SSD and I'm getting along. Kiss any future surround sound systems goodbye.

I'm getting the same thing. "You will be fine." But I'm smart enough to know that they are only seeing what they see. And what else should they say to me? "Your screwed." Haha that would be a nice change.

There is no 'Suck it up'. Only live threw it and plan ahead of what you have to deal with. And don't feel guilty for being mad and upset. When you whack your finger you get mad. Why? Cuz it friggin sucks. And a AN sucks the big one.

[deheisel11]

I agree with all the other posts.  Tod had mentioned writing down experiences and thoughts.  My wife suggested writing a journal, which I initially didn't care for much.  However, I finally did start a journal and writing does help!  I haven't told my wife that she was right, again.  A friend of mine had an AN removed 6 weeks before mine, so I include our conversations also.  It is great when you can say surgery is behind you.  My friend told me that, he was right, so I am passing it on.  Take care and trust in yourself.

[Jim Scott]

Greg ~

Most of what you're dealing with, emotionally, is fairly normal.  You're facing major surgery that will probably be successful but you may not be exactly the same afterward.  The possibility exists that you may experience some post-op complications, and you're all too aware of that reality.  It's natural for family, friends and co-workers to offer smiley-face bromides to you because, to be frank, they don't really understand what you're dealing with, they aren't the ones facing the surgery and most people aren't all that interested in hearing about other people's health problems in too much detail.  Everyone has their own problems.  They very likely wish the best for you but beyond that, I wouldn't expect too much commiseration.  No one else can live in our body so even with supportive spouses and family, this is something we have to wrestle with mostly on our own.  How we do it is up to us, individually.  These forums exist as a place where AN patients can find empathy (we've been there), support, information and, yes, a good place to rant, which can be cathartic.  No need to apologize for doing what most of us have done at some point in our AN experience.  I hope it helped.

Jim

[cin605]

When the surgery is over and behind you...you will hear this one many times from everyone from Doctors, Neaurologist,friends ,family...your dog..lol..the statement will be"You Look Great!!!!"And even though you feel your crumbling on the inside...you will say "Thanks!"

[nanramone]

It's good that you have a safe place to come and rant to people who care. One of the worst times of my life was a period during which my former husband was suffering from a damaged spine. He was injured on a job that involved two companies, and neither would assume liability for the injury - neither would our insurance company, since it was work related. Indiana had, and probably still has horrible laws that protect businesses and leave workers out in the cold.

During a 2.5 year period, I supported my husband and two children by working 7 days per week. Additionally, I had to continue to take care of household duties because my husband was in a rigid body brace which he could not remove without being in pain.

I was exhausted, everyday of my life. Everyone asked me, "How's Jim", and I'd tell them his story...but NO ONE asked how I was doing. I became withdrawn and didn't want to see people, because I perceived people to be lame - I really needed a big hug, but had to give out all the hugs.

I guess no one knew...how could they? I kept quiet and didn't tell them that I used to go outside at night where I could be alone and my family wouldn't see me, and I would cry for long periods of time.

Yes, I think it was the hardest time of my life. I had to be stronger than I was.

I wish that at that time, I had a forum to go to - it would have helped. I know this one has certainly helped me through this AN thing. Most of the time, I just read a few posts and don't even write - but I come here almost every day, and somehow, it makes me feel good to know that there are people who share my fears, worries, and my victories.

Please keep writing, even if it's only to vent. It's good for you, and good for us.

Nancy

[sbrn]

Thanks all for the words of support. Some days are better than others. I think getting closer to the surgery the more I think about things the more noticeable the ringing in me ear is ect. atleast on the plus side I have friends and family coming in to help finish a deck project for my hottub and pool. its amazing how fast work seems to pile up when you are running against a time line