ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Karen on January 25, 2011, 08:47:29 pm
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I had my surgery 7 years ago. I have found that I need at least 8 or 9 hours of sleep a night since then. My husband keeps telling me it's because I'm getting older!! I thought I read somewhere that after making up for the balance problems, the deafness, the vision and facial paralysis all day you need more rest. Does anyone else notice this. Also I have found that after talking all day and dealing with people and dealing with the facial paralysis all I want to do is just sit and not have to talk alot. Big crowds also bother me. Anyone else notice this too. I have gotten past the fact that I think people are looking at me, thanks to Jackie Diels, not only does she help with facial retraining but emotionally too! There still isn't a day that I don't wish that I had my old face back, especially since I don't have feeling on that side of my face. Enough feeling soryy for my self, it does help to vent on this forum!!! No one else really knows what it feels like. Karen
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Hi Karen,
First off venting is good, however I don't call your post venting, I call it stating the facts. I had my surgery 19 years ago this May, yes, I'm still counting. I too need more sleep, prefer 9 hours. Hubby who is 3 years older doesn't, so it's not age. YES, the balance problems, deafness, vision and facial issues cause you to need more rest. I noticed that on Saturday I need a nap to catch up from the exhausting week but don't need to on Sunday because I'm not working so hard at listening etc. because I'm not at work. However if I'm out in a crowd on the weekend then I tire quicker. When I get home from work I just want to be by myself for a while, but I think that's kind of true of everyone that works. You need a chance to relax and not have to talk to anyone or worry about your issues. Yep, big crowds are a problem, didn't use to be a problem. I don't worry to much about whether people are looking at me or not because of my face but I do wonder if the eye ointment is running down my cheek and yes, after all these years it still bothers me. I tell myself that it probably bothers me more then it does them. Sometimes I wonder when someone wipes there finger below there eye if they are secretly trying to tell me I have ointment below my eye or if they do it subconsciously because of the ointment in my eye or they just had an itch! I too would like to have the old face back, miss the smile and would LOVE to not use eye ointment all the time. I understand what you're saying and feeling. Jill ;)
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Hi Karen .....
My surgery was almost 3 years ago and I definitely need more sleep now than I did pre-surgery. Sue in Vancouver brought back around this excellent link to why we need more rest after AN surgery. http://www.hearinglosshelp.com/articles/balancesystem.htm
All of the energy we expend maintaining a modified balance system, struggling to hear, struggling with vision, etc. etc. literally wears us out. Only those of us who have walked in your shoes can fully understand.
Yes, if we are totally honest, all of us wish we had never had an AN. However, there are probably other things about our lives that we wish were different, as well. It has taken me a long time (and I still have an occasional "pity party") but I finally decided I was not going to let my having had an AN control how I reacted to my surroundings. Sure, I have had to modify how I do certain things (no more walking in the dark, always remembering to place myself in a group to assure better hearing, etc. etc.) but I cannot go back and undo the past, so I am determined to make the most of the positive things in my future.
So glad you have worked with Jackie Diels ..... she has done wonders for many AN patients!
Many thoughts and prayers.
Clarice
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Believe it or not, brainwork burns calories and consumes energy. Healing the brain, just like any other part of the body, consumes energy. Sp, of course you are tired. Lots of us are. It does seem to get better though, especially as your brain becomes more fit.
-Tod
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Oh yeah...I'm only a year post op and I definitely can tell the difference. I was 45 at the time of my surgery, so yes maybe age is a little bit of a factor, but not to the extent that I go through some times. Especially when I get in to social situations, like parties with lots of talking and such...really wears me out....
Jay
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Believe it or not brainwork burns calories and consumes energy.
So why am I not losing weight? :D
Karen,
My surgery was 4.5 years ago. I was tired before the surgery (brain stem compression for who knows how many years) and I'm tired post surgery! I'm a napper, past and present. (I think it is a gene thing)
I factor in a happy nappy everyday, usually on the recliner with an ear plug and my BAHA set on a background static.
Tinnitus is my big culprit. The BAHA has helped. But I HAVE to have the rest during the day or else......I look forward to it:)
Maureen
I also sleep 8 hours a night.
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Karen, Forgot to mention upside of sleeping longer than Hubby. On Friday night I make dinner, don't do dishes or clean up around the house much at all. I call Hubby my morning elf as he likes to do things around the house when I'm not home or when I'm asleep. When I get up on Saturday morning my kitchen is spotless and I'm well rested and Hubby is glad he could help out. Jill 8)
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When I get up on Saturday morning my kitchen is spotless and I'm well rested and Hubby is glad he could help out. Jill 8)
I want one of those!
Don't fret the extra sleep, Karen. Our bodies need it. We'll probably live longer than the average person (great ::) )
Maureen
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Hi, Karen ~
I'm a bit late to the discussion but it's a pertinent one and I wanted to add my opinion (basically echoing other folks smarter than me) that because we've lost one balance nerve and (in my case) the hearing in one ear, our brains have to work harder to compensate and keep us both balanced and cognizant of what we can hear (for those who are SSD) and that will necessarily tire us more than a person without those deficits. Yes, our bodies do 'adjust' but it's like a car that is loaded with luggage and going up a hill. The car will eventually get up the hill but it's gas mileage will be a lot less than a car that isn't over-loaded. Not sure if that allegory makes sense to you but it's the best I could do on short notice - or maybe I just need a nap. ;)
Jim
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Allthough I havn`t had surgery or Rad. (W+W) I do believe I need more sleep. My problem is when I take my naps I for sure have a problem falling asleep when I`m supposed to. I try to force myself to stay awake during the course of the day but it's very hard. Now even when I stay awake thru the whole day lately its sill hard for me to fall asleep. Over the last year or so I have been takin ambien which does the trick. I really don`t want to take sleep aids but what do you do? I need a nap! Thanks, Mickey
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When I get up on Saturday morning my kitchen is spotless and I'm well rested and Hubby is glad he could help out. Jill 8)
I want one of those!
Maureen
Maureen, wanted to let you know that breakfast was ready when I got up this morning, would like to post more but gotta go, Hubby made dinner and it's almost ready. It will be all over though as soon as Spring comes as he will head back outside to do his many warm weather projects.
Jill 8)
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JEALOUS!!!!!
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I am 55 days post op, today. And yes, I find I need more rest. I've always loved to sleep, like the actress Joan Hackett, who had put on her tombstone "Go away; I'm sleeping!. But now, I need about 11 hours and have to fight off daytime naps. I don't like to sleep in the day, because I have real trouble getting to sleep at night. Sometimes, however, sleep is just a big black hole that is going to swallow me into the abyss, and I just have to give up and go with it.
That brings me to the subject of my frustration. First, I have to say that I have had a truly blessed recovery - no nausea, no vertigo, balance problems improved, no real headaches, minimal trouble regaining eye function and focus (reading withing 3 weeks), no facial paralysis, and the anesthesia/postoperative depression lifted in about a month. So I have faced NONE of the difficulties that I know members of this board have faced/are facing. This makes my complaint seem trivial, and to some extent, it is. But it's also one of those 'Chinese water torture' drop things that wears away at your emotions. So I am venting.
I have always been the primary caretaker, and my husband and daughter have done their best to take over that role. And I know that I am JUST BARELY into my recovery, so I am being deeply impatient. But here is what happens, for instance: Last Thursday I got up, took a shower, made a dozen deviled eggs and went to mass with a friend from church. Then we stayed for the 'retiree's luncheon, as it's lovingly called, after. There were about 10 people there. My friend drove me home, and kaboom - up loomed that black abyss of exhaustion waiting for me. Nap time. It seems that my limit for doing anything is about 3 hours. Then I am overwhelmed with exhaustion (as I've described it before, the 'sand filled rag doll with a toe in her hole' syndrome) and I am useless.
How long does this last? I repeat, I'm totally impatient and only 55 days from surgery, but tell me this at least extends at some point to a normal day of work sometime soon????? Not in years, but months?
The sleeping part - that's not too bad. :)
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Emom,
55 days (but who's counting) is basically about 2 months. I remember at that time just beginning to do things, and at a real slow pace.Everyone is different.
Really, sounds like you are doing well!~the fatigue (I know the feeling 'like Dorothy in the poppy feild-I'm so sleeepy ') should get better. Give yourself some more time. I haven't heard of anyone with this abyss type fatigue last more than a couple of months.
Curious~ Did you lose all your hearing?
You say your balance has improved, but you are still working at staying balanced and listening, which is emotionally draining. Anytime I come back from a crowded gathering, I need to go "hide".
Too much over stimulation.
All about getting used to the "new you", a phenomenon that no one gets except US! Working on the balance and walking will help you too.
Many people post that the mornings are good, and then the less important stuff is scheduled for the afternoon, because it IS emotionally draining, this new life of ours.
Okay, gotta go take my happy nappy ;D
Maureen
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emom~
I was going to write most of what Moe said - you are still relatively close out. I had a very involved 14 hour surgery and a stroke, but I didn't even go back to work until 3 months and even then I just came home and went straight to bed!
I have been away from surgery for a long time (15 years) and I still get very tired at times - but you learn how to adjust your schedule better. Like Moe said, I make sure and try to schedule important or "mind" things in the morning when I am fresh. I have had at least 2 Dr's (that were never related to my AN case) tell me that I will ALWAYS be better in the morning. I seem to do better juggling night activities if I know about them in advance. I guess that I just subconsciously adjust my schedule accordingly...I guess what I am trying to say is that over time you WILL adjust! Lately, I have realized that, even in the morning, things that are unplanned/stressful REALLY throw me for a loop and it takes me a couple of days to re coop. A few weeks ago, a situation occurred that REALLY showed me that! (I can PM you if you want the example!) I was a zombie for a few days trying to revamp from that one!
Hang in there - it WILL get better!
K ;D
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Moe - I had translab and am SSD in the right ear. And you are right - there seems to be a proportionate relation between tiredness and the number of people. That's why I haven't dealt with full Sunday mass yet - waaaaaaaaaaaaaaay too many people, all of whom I love (small church) but toooooo many!
Kaybo - I know you are right about the scheduling thingie. Thanks be to God I have always been a morning person. Right now, with the never knowing whether a nap is going to disrupt my night schedule, not so much. But I will get back to it, I know. I'm also experiencing anger/grief over my inability to do the 3 things at once multitasking I used to excel in, but I am sure I will eventually give and and get used to only doing 2 things at once, lol.
How do you PM someone?
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Oh girl - I am the queen of multitasking!! I have 3 girls - 2nd, 3rd & 7th grade! We have just moved this summer so we are slowly getting back into activities but right now I am a Room Mom, a Team Mom for basketball, I tutor, do a Bible Study and volunteer at the Middle School (& those are just the things I remember right now)...oh, Treasurer for Brownie troop, started a Photog Group here, and have to get one to gymnastics at the same time as those Tuesday activities!! You'll get there!! ;)
To send a PM, you just click the little "conversation bubble" on the left of your screen that has a little PM in it! :)
K ;D
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I'm tired just reading your post K! And it's morning!
You ARE what comes to mind-~WONDER WOMAN!
I multitask , not like you, but still try!
Emom- don't fret. You'll probably get back to the multitasking thing as time progresses. You may realize one day.
"Hey, I'm multitasking!" Easy and slow now. Brain surgery and all the effects, affect the body: and listen to your body. Otherwise, overdoing it may result in more problems :(
I remember the year post op, in a nutshell:
I was living in Corpus Christi TX, husband was stationed in Bremerton WA. (We were doing the sacrificial geographical dislocation so kid could finish high school, another one starting college). I found out about the tumor, went to WA, had the surgery. Back to Corpus in 6 weeks. By the end of that first year, I had successfully sold our house, put the money into a "winter home" which is being rented now, graduated a kid from high school, sent 2 to college, moved (military did the bulk. Brother helped with the cross country trek), and settled into our previously purchased home in WA, waiting for hubby to come back from AFGHANISTAN..(great timing...)
Thinking back, I think how did I do that??????? I'm more tired now! Must have been adrenalin, and God AND my daily nap. If it was 2 hours, so be it!
Check back with us in a couple of months and let us know how you are feeling. Feel free to chat here too!
Maureen
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lol....I think the correct phrase is "Needs must when the Devil drives" ??? That WAS serious multitasking. You and Kaybo give me much hope. Now, if God will just knock the equivalent amount of patience into my head.....
Many thanks.
Emom