ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: tc on December 10, 2008, 01:45:18 pm
I am 3 years out from my surgery date (September 23, 2005). I thought I was coping very well with everything, lousy balance(especially at night), total loss of hearing in R ear, R sided facial paralysis, aspiration when eating, salivating when eating from r eye, vision changes, and who can forget the constant headaches, and scalp tenderness, etc. (everything that alot of you are going through also). Anyway, about 2 weeks ago I started this pity party for myself, I guess I thought that I would wake up one day and it would all go away, but I realized that it is here to stay. Any suggestions besides more drugs, heaven knows I am taking enough!! ;)
Tammy: I'm a little behind you with the surgery(6/19/06), but at times feel the same way with the lingering issues. I had the T3 surgery 11/07 which really helped my appearance; the thing is the eye issues with me. The only advice I can give you is what I say to myself, 'Keep a peaceful heart, let the bad feelings go', then I think things can alsways be worse (alot of people don't like to hear that but it does help me).
Remember, we are ALLOWED to have these feelings; but I think if it's lasting more than usual you may need some supportive therapy, antidepressant or change in antidepressant if you're already on one. Deep breaths help alot, nature walks, etc.
Hope you feel better soon, Always good thoughts, Nancy
All I would add is make yourself get outside or at least open the blinds and let some sunshine in!
Thanks for the input. I took your advise and went for a walk outside, very cold but the sunshine helped. Sometimes the Lexapro just doesn't cover it!!
Pity parties are allowed.....just a matter of for how long you let the party go on!
I am 18 years post -op and still have them from time to time but set limits on them.....when, where and for how long ......when the party's over just carry on!
I am a couple of months ahead of you and have had the same feelings you have had. Many, many pity parties. Therapy has helped as has Cymbalta, Topamax and a host of other meds. Sometimes you just have to have the party and then let it go. Sunshine and fresh air helps. Don't be too hard on yourself. This was and is a life changing experience. You survived and now you need some encouragement and something really good in your life.
When I get really bad I go visit a nursing home and there is usually a young person there who is far worse off than I am. Then I also listen to the older folks' stories about when they were young like me (I'm not, but it makes me feel young to listen to them!)
Hugs to you,
I don't have much to add except to say pity parties are allowed, just don't stay there too long. Staying active will help the emotional issues and I can't guarantee anything, but maybe doing exercises for balance will help your balance issues. Even my PT told me I wouldn't have to do these exercises forever, I have a feeling he might be wrong. If you are interested, I posted all the exercises I learned in PT in AN issues under the ready to give up thread. Even if you just do some of them, they might help. I've heard from others here that Wii Fit is also a great help for balance issues. Another thing to remember is that you should look for things that make you happy and make you laugh -- laughter is good for the mind, body and soul.
HI, NICE TO MEET YOU, I AM TAMMI TOO ! ;) I ALONG WITH EVERYONE ELSE HERE CAN SYMPATHIZE AND EMPATHIZE WITH YOU. I ALWAYS FIND COMFORT WHEN I TALK TO SOMEONE THAT HAS BEEN THROUGH WHAT I AM EXPERIENCING AT A PARTICULAR MOMENT. WHEN I TALK I FEEL I HAVE BEEN VALIDATED, AND LESS NEED FOR MY OWN PITY PARTY, BUT IF I WANT TO HAVE ONE I KNOW THAT I CAN BECAUSE THERE IS A LIGITIMATE REASON. AND WE CAN HAVE ONE TOGETHER! PARTIES ARE NEVER FUN ALONE! ;)
ABOUT 1 MONTH AFTER MY SURGERY I WAS REALLY DOWN AND A FRIEND OF MINE WENT AND BOUGHT ME THAT MOVIE "PLANES, TRAINS AND AUTOMOBILES " THAT WAS THE FUNNIEST MOVIE I HAVE EVER SEEN!!! I LAUGHED TIL I CRIED, MY STOMACH HURT AND MY HEAD!! AFTER THAT A PITY PARTY WAS OUT OF THE QUESTION!!!! I AM WITH WENDY ... JUST TRY TO LAUGH AS MUCH AS POSSIBLE, AND SURROUND YOURSELF WITH GOOD PEOPLE .I JUST TRY TO REMEMBER THAT GOD IS IN CONTROL AND I CAN'T GO BACK, AND DO NOT WANT TO. SO I JUST PRAY FOR THE STRENGTH TO KEEP GOING! GOD HAS GOTTEN ME THROUGH THIS YEAR AND I KNOW HE WILL LEAD ME ON AND HE WILL YOU TOO , BECAUSE HE SAID HE WOULD NEVER LEAVE US NOR FORSAKE US!
I AM ON YOUR SIDE! ;)
you have every right to feel the way you do.thank god for this group.all of you.i'm 16 month post op and have had issues but not as bad as yours.i empathize with you.hopefully we all find our comfort zone hopefully it's sooner rather than later.i know i'm grateful for things more now than ever but i'm still searching.god bless you all.
Yes I agree pity parties happen. Now I have to say - I have gotten down about having a pity party. BIG help THAT is! ;D
This is what happened to me a number of years ago when I had a really bad year - I got myself psyched enough to be brave and bare my soul and tell the doctor that I, the "strong one" was battling with depression. It was hard for me to admit even though I had every reason for it. You can only imagine how thrilled I was when the doctor said, "Well just cheer up!". I kid you not. My jaw dropped, I WISH I had said - "WOW, what a great idea - I had never thought of that!" I was so dumbfounded I paid the idiot and never saw him again. I found a good doctor, got some grief counselling and a mild dose antidepressant and I was better. Short bouts of pity partying I am sure are not unusual. I would think most here with any complications have had them.
I send you a big hug, a chuckle and a smile,
I have a different mindset...no pity parties allowed. I hope that doesn't sound harsh. I really think the best medicine we can find is within ourselves. I'm 4.5 years post op. Lots of issues, not quite as bad as yours from the sound of it but pretty disabling for a long time. Dizziness and vertigo, constant headache (sometimes blinding), sharp spikes of pain, complete hearing loss in left ear with constant tinnitus. The biggest problem was the dizziness..falling, bouncing off walls, I often couldn't drive.
Here is why I don't allow pity parties...I posted this highlighted text in another thread but thought it made sense here as well.
On the days that are bad and my thoughts start to drift to why me I remember a day shortly after I was diagnosed when I was particularly depressed. I was sitting in the waiting room at the hospital getting ready to have the BB's implanted in my skull that are used for the targeting scans to direct the proton beam during surgery. A young boy perhaps 9 years old was wheeled into the room...obviously in a fight with childhood cancer...no eyebrows or hair....thin as a rail. We struck up a conversation. He sensed that I was feeling pretty down I guess because he started to try and cheer me up. Here I was in my mid 40's having lived a great life feeling sorry for myself while a 9 year old with a potentially terminal illness tried to console me. I vowed from that point on never to say "Why me?" The thought still occurs to me but I never dwell on it.
Since then I've built on that. I realize how lucky I am. I used to think how great it would be to win the lottery...I didn't realize I already had. I was born into the most prosperous nation the world has ever seen. A place where personal freedom is guaranteed. I live amongst a small percentage of people that relative to the majority of the people on the planet today are fabulously wealthy (I'm just a middle class hard working guy) and if you consider all the people that have lived before us it's astounding how we live. Kings of old could only dream of the riches we take for granted (Cars, TV, Music, Travel, Art, Ben &Jerry's....the list is endless). I had wonderful loving parents. A great family growing up. Some of the best friends a person could ask for. I found my soul mate at 17 and married her when we were 23. Together we've raised two extraordinary daughters that have brought us so much happiness. I've resurrected my love for the ocean BECAUSE of my AN. My new found passion for surfing leaves me feeling alive like nothing I've ever done before....Life is Good!
I've come to believe that without contrasts we can't truly appreciate life. Would you know what white is without black? or pleasure without pain?
I know your circumstances are different from mine but they aren't as bad as that 9 year old boy's or as a bad as a large number of the people on the planet today. You need to reach down inside and find the strength to smile in the face of adversity and keep on fighting. Nobody else can do it for you.
I was really struggling 1.5 years ago when my brother gave me a gift that changed my life. I still have all the other issues but i've found a way to regain most of my balance through extreme therapy. What I do, standup paddlesurfing, may not be for everybody, but it made me realize that with extraordinary work comes extraordinary gains. A year and a half ago I was on a downward spiral, an overweight, balance challenged guy approaching my 50th birthday. Today I'm in almost the best shape of my life and my balance is almost back to normal...at least on the good days. My point is...don't give up, don't give in. instead of a pity party..get angry...go for a run...do something, anything, to help yourself.
What a great post! Thanks for reminding us about keeping things in perspective!
I don't know what happened to disconnect us on the phone. I tried to call you back but got your voicemail. Hope you are doing well...it has been very hectic around here with a sick girl & then leaving town for the holidays. Give me a call if you'd like to talk.
Have had my share of pity parties and I've decided that (for me at least) what happens is that I expend an enormous amount of energy just trying to deal with things and carry on. Then after a while, something sets me off and I'm a mess for a couple of days. Have to drag myself out of bed to go to work, to exercise, etc. The exercise (fresh air and sun when possible) has had the most positive impact on me. More recently I have been going for massage therapy (not spa massage, really different) and this has also helped me cope with the day-to-day challenges. You certainly have plenty to be upset about so have your pity party. I hope you feel better really soon.
We're all entitled to bad days - heck, I had occasional bad days BEFORE I had a brain tumor, why wouldn't I have one now and again after. However, Stone made a great point. I am in my early 50's so I don't have to look far to find friends and family members who have it worse than me. I have a close friend who is dying of cancer and yet every time I call her, the very first thing out of her mouth is "how are you feeling?" It kind of stops me right in my tracks.
Which isn't to say we can't have our days. We can and we will. And, at the end of it, we'll find some things to smile about.
Sometimes life stinks. My oldest daughter is going through a rough patch in her life...I worry about that. My wife has the precursors for breast cancer...I REALLY worry about that. I still have bad days...just not ones caused by my AN.
It's the hardest thing I've ever done. Like I said the "Why me" still does occur to me but when it does I use it to provide some focus. I double my efforts to make sure it can't get ahold of me. Even during weeks like this...I've just had a bad week and the thought did cross my mind. I push it aside and say "no way". My mantra underneath my picture says it all. That's what I need to do. I know the bad week will end...that a nice day with good waves will come and i'll get out for a long soulful session. Maybe that's the biggest difference that I've got going for me....i've found a true passion that I can use when the bad thoughts start forming. I know it was much harder before I started doing it.
We each are going to deal with this differently. I'm not trying to say that there is anything shameful in a pity party. Just that I found something better for myself. I do hope that you can make your good days more than make up for your bad too.
Now I know I'm not nuts......this is normal....I'm 4 years out from CK.....thanks for sharing......I forget to use this forum for support and understanding.....get depressed...try to hide it from family and friends....lose patience....become irritable.....tears flow.....sick at my stomach etc. I am a widow....thus live alone....and try to be the "merry widow".......but hide out a lot in my home it seems and I withdraw from gatherings that I normally would enjoy......"fake it till you make it" works sometimes but not always. Most of the time I am positive....accepting of this AN thing....taking steps to make life better/easier.....excercise....diet.....doable activities.....then out of the blue.....fear/frustration steps in and I meltdown big time. I can get back up to speed within a reasonable time. After reading others who meltdown too.....guess I'm not to far from normal. Thanks all for your input