ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: kenneth_k on April 15, 2010, 05:06:27 am
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Does any of you sometimes feel afraid of saying that you don't feel allright?
I had my tumor removed 1½ years ago and is supposedly healed and fight for fight.
Sometimes I don't feel like that but I'm afraid of being perceived as a tape recorder playing that old sad song again and again.
How do you cope? Do you feel our surroundings want to hear "the glass is half full" in stead of "the glass is nearly empty".
As a soldier, I have been classified "limited ops". Any carrer advancement is out of the question. Sometimes I feel like I'm not even able to handle a desk job. I never tell anybody. Not even my wife.
When do you know it's time to pull your self together or when it is time to sit in the corner and feel sad.
Kenneth
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Kenneth~
I want to address this but have very limited time...YES, it is OK to feel this way but just don't let it overpower you!! More later...
K ;D
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Kenneth .....
Although I am not in your situation, there seems to be something about that 18-month post-op slump. I had it, as did several others who post regularly on here. At about that time out it seems like I felt no one really wanted to hear about my health issues any more ..... even though I still staggered when I walked, still said "What did you say??" etc. ..... you know the drill.
At 26 months out now and looking back 8 months, I have progressed much farther than I felt I would be at that time. What happened was the rate of progress slowed dramatically after a year, but it did not stop.
When do you know it's time to pull your self together or when it is time to sit in the corner and feel sad.
If these feelings are interrupting your relationship with your wife and your job, perhaps you need to talk with a good friend, doctor, or counselor to unload some of this weight and maybe even take an anti-depressant on the short term.
Are you getting enough sleep? Fatigue is a major deterrent to good balance and good hearing. Sometimes a simple "Well, time for a quick power nap ....." is all it takes to ward off the wobblies.
You really should share with your wife when you are having a bad day. Show her this web site and how fatigue is a common thread among all of us ...... and not just for 18 months post-op. My husband still kids me by rolling his eyes when I say "power nap time!"
Best thoughts and let us know how you are doing.
Clarice
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Hi Clarice.
"18 months post-op slump". If that is an official AN condition, then I simply have to wait another month ;) then it's over.
Thanks for caring.
Kenneth
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Kenneth ~
I have long suspected that most post-op AN patients never recover at exactly 100%, although for many, the 5 or 10% deficit they may have to deal with doesn't impact their lives because they just absorb the fatigue, deafness, whatever and get on with life. I put myself in that category. I have a few minor deficits and one major (I'm SSD) but I rarely mention my fatigue and a few other minor inconveniences to anyone. My wife is well aware of these things (she has her own health issues) and accepts them as part of who I am, now. We do pretty much whatever we did before my AN diagnosis, surgery and radiation. Still, I can understand your reluctance in admitting to others that you don't feel well. That might be a 'guy thing' because I would almost never admit to not feeling well, long before my AN experience. That hasn't changed much over the years, although I will tell my wife (of 40 years) if I"m not feeling well, but even then, I have to be really sick to admit that simple fact...one she usually knows before I ever get around to admitting it.
I believe that only you can determine whether you should allow yourself to succumb to what amounts to depression over your physical losses due to your AN or, as you put it: 'pull yourself together'. If I had a vote on the matter, I would vote for admitting your deficits and weaknesses, then determining to move on with your life - as you are - not as you wish you were - and building on that. I trust you'll reach that decision, soon.
Jim
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Hi Clarice.
"18 months post-op slump". If that is an official AN condition, then I simply have to wait another month ;) then it's over.
Thanks for caring.
Kenneth
Kenneth,
I am post op 17 months and I still have many feelings of pessimism, doubt and even despair, but they pass. Its not a bad thing to share these feelings especially with your family, but I agree with "the guy thing", because I don't think I would be able to survive each day without my friends and family's support through the healing and "deficits" (thanks Jim)
Hang in there and although life is not all sunshine its still your life and only you know what's really going on inside.
Take it day by day,
Liz
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Kenneth, don't be surprised or disappointed if it lingers a while beyond the 18-month point.
I think it's important to let you wife know how you are feeling, but you've also already done the best thing you can do, which is to post here among people who understand what you are going through.
I had a non-AN surgery that resulted in facial paralysis. Twenty-two months out I look a lot better but there is still much room for improvement. Lately I have had people at church question why I am still included on the prayer list for healing. Well, it's because I'm not done yet and I feel comforted by knowing that I am being prayed for!
I think that most people around us just look at the surface clues and assume that you are recovered. They have no idea how devastating that 10 or 20% deficit (perhaps unseen) is to us. They think, with the best intentions, that you should be happy to be alive and to still have a job, and never even consider you earlier aspirations for advancement.
Best wishes as you work through this. Please do talk with your wife.
Sara
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I think that most people around us just look at the surface clues and assume that you are recovered. They have no idea how devastating that 10 or 20% deficit (perhaps unseen) is to us. They think, with the best intentions, that you should be happy to be alive and to still have a job, and never even consider you earlier aspirations for advancement.
Sara
Sara, that was very thoughtful of you. And very true. Admitting weakness is not my strong side. Oops, now I admitted a weakness ;)
I meant outside cyberspace.
Thank you all for you advice.
Jim, as always you a light at the end of the tunnel.
Kenneth
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Hey Kenneth,
Just this week, I was talking to my yoga instructor about over thinking stuff, and her reply was a quote she had heard: 'as many thoughts pass through your mind in a given moment as dust specks through a ray of light'. Surely, they can't all be positive. A year after my surgery I departed this forum because I was determined to keep the surgery 'just a bump in the road'. I felt I could no longer be a help to anyone, nor did I need their help. If I hadn't been so stubborn, I could have recognized that needing support anytime is OK, and I might have come here for it when I, at 19 months and 4days had an event which sent me into a downward spiral which had me questioning if I was depressed. Then I might have chalked it up to an "18 months post-op slump" after Clarice and others pointed it out had I allowed them to support me, and possibly exited that frame of mind quicker.
At 25 months now, I really have felt a vast improvement in "deficits" (as Jim aptly described them) over the last couple months. My neurosurgeon said up to five years for the brain to continue improving. There are definitely plateaus, which I wonder might be the cause of feeling down, or vise versa - dunno. Anyway, I'll try not to be so critical of myself on the next downturn. I also found it interesting that in Jill Bolte Taylors talk on her stroke, she said she observed improvements up till now, eight years after. Maybe there is no time line on hope. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html
Lastly, this forum will never consider you a "tape reorder" played again and again, so keep coming here; and as a wife, I vote you should let your spouse support you too.
Best,
Julie E
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My neurosurgeon said up to five years for the brain to continue improving.
Oh good, I was right! I mentioned this in another thread about the trauma to the brain thing, which is basically what we had with the surgery -TBI
So I can continue to blame my AN for another 1.2 years! ;D
Anyway, Kenneth- I feel for you as a male, vs me a FEMALE. Women have hormonal issues and are used to whining (ok maybe not all women but this one in particular). ::)
Men are the strong, stoic, type and you "look" okay so therefore are expected to be the same.
That's what is so great about this forum. We understand, empathize, sympathize, and it's just good to validate what we're going through.
It's all about the "new you" which may be hard to accept.
My tumor was pressing (or smashing) my brain stem for many years, yet I had minimal symptoms other than than nondescript lightheadedness, tinnitus, fatigue and finally loss of hearing in the left ear which prompted the hearing test.
So for me, the post op symptoms are basically the same, though I fee like I can "think" clearer. I just mention that I know my limitations now, and have to have rest periods. I napped before and I nap now. I think the nappy thing is genetic. Most of us love to nap- my kids/siblings/even husband.
So, don't be afraid of being a whooz. Just take care of YOU, and you may feel better. I know it is hard to tell a man to Pamper himself! Whatever it is you like to do, make sure you take time for that. Easier said than done, depending on job/family/kids?, etc.....
Here's to a nice weekend ahead,
Maureen
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I also found out my tumor was 3x2.5 cm, not 2x2.5 cm, so that gives me even more complaining room :)
Maureen
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Hi Kenneth,
I had AN surgeries in 2002, 2003, and 2007. I had many complications in 2007 and had avery difficult time.
Now, three years since that catastrophic event, I am pleased to tell you that I am still improving.
It seems that my improvement has been imperceptably slow. All of the sudden, I realize that I've just done something that I thought I'd never do again. My latest example - Both of my balance nerves have been severed. I rely on vision and feel for balance. Recently, I was able to ride a bicycle. It wasn't graceful or effortless, and I wouldn't ride in traffic, but I did it.
My point: Hang in there. Things may not seem like they're improving, but the improvement may be difficult to notice.
Please take care,
Jeff
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Yeah, Jeff! Good to hear that you are still having some improvements! You are my inspiration as I know what you have been thru and are very lucky to be doing as well as you are! You have had more than your share of of AN problems. NF2 is not a fun condition to have. I wish you well! Cheryl R
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Kenneth if you haven't read the thread "nobody asks anymore" you will learn more on this very subject, including a book you can read.
Best Regards,
Sue in Michigan
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For me , I ride waves ... I am good for months on end and then crash and feel at loose ends , a failure , like I am less important than I should be in the general scheme of life ... then I get back up on the next wave and ride it til I crash again ... may be the female thing ... have even had PCP test hormones and they don't seem to be changing ... or may be my nature ... (I sometimes think I am superwoman) ... after a crash and coming here and getting permission not to be super woman , I put my super shirt in Goodwill to try to banish this idea ...I try to take a day and a time ...instead of focusing on what I can't do try to look at what I can ... and when I fail at this I come here , ask questions , moan and groan and know that for most part the feelings will pass ...
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Hey Kenneth
I am at 17 month post op and definitely in a slump. Everyone expects me to be all good because i look fine and it's been a while, but I am still totally symptomatic. I don't drive because I dont trust myself not to have a spell and sometimes i think about using a cane on the subway and in crowds so that people will at least have some kind of not wellness to see. I am 100% deaf on my right side and today in the grocery store someone was talking to me and thought i was a real jerk when i didn't respond. On my right side of course! It's a lot to swallow. The surgeons consider us well when we are neuroma free, but there is a whole lot that they don't address. I am hopeful reading about this 18 month slump!
x
Carrie
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Carrie .....
Recovery from an AN is not a steady uphill progress ..... we go forward and backward. But, the good news is ..... it is much more forward than backward. And, it is sometimes rapid progress and sometimes very slow progress. Each of us is having a unique recovery. Even at over two years out, I can look back and say "Well, I couldn't do that x months ago." Do not give up! Things will continue to get better.
Re: a cane on the subway ..... I resisted greatly at first about using a cane (gave it up totally months ago now), but in crowds it is better to be safe so used the cane only in those situations for a long time. Even now, in a crowd I get disoriented because I lose my stable gaze fixation. I have learned to instinctively find a wall or something that does not move to keep my focus before I try to walk. I also try to stay to the wall side of a room or lightly hang on to my husband or a friend when in crowds.
Best thoughts.
Clarice