Fatigue 7 years post op

[cecile k]

It's been seven years since my AN surgery and fatigue has always been a battle each day, although it has become much better the past two years. Headaches are still an issue as well, although they are generally bearable enough to work through without meds. The fatigue is getting to me....I know that I have five boys to keep up with (ages 11 - 21) and feel badly that often I can't go with them and my hubby on outings, etc. I just seem to need a lot of 'down' time - time for myself alone to be able to cope. Anyone else have this problem?  Thankfully, I am able to be a stay-at-home mom and maybe just keep too busy with the huge amount of baking/cooking I do :-)....oh, and the laundry....

Cecile

[tony]

I saw your note - and there is some truth etc
I am 3 yrs from major surgery and still notice changes now
I am now able to play 18 holes x2 back to back
or work an 18 hr day if required - so it can get better
Firstly I doubt at 7 yrs out you are still in any kind of
post surgery "reaction"
I suspect this is still balance issue/ noise overload
Basically your Post Op balance is having to work rather harder
While your Post Op hearing is struggling a bit making sense of things
- this can cause a sensation of headaches and fatigue
So two plans for the future
To counter the "overload"
Its always worth in the day having a quiet half hour somewhere
- sit down, no noise and eyes shut if possible (and is best)
(Yes you will have to plan this - it wont "just happen"
with 5 little ones)
You will be surprised just how refreshed you will become
- I find it worth about 4 hrs sleep
Plan Two - balance
If balance is still a problem then you need
To work it a bit harder
Any kind of activity(that you enjoy) that works the balance
ie Yoga/ballet/light gym is good
- make a space at home - where its safe to fall
Start one hour a day - and work up to more ?
Yes, this will make you more tired short term
- but as you get better at it - less effort required
and more stamina will return
I suggest you let your partner see this
You are still in Rebuild and will need some support ?
Best Regards
Tony

[Kaybo]

Cecile~
I am 13 years post-op and while I think I lead a very active lifestyle (I chase after 3 curly girlies 6, 7 & 11), I have to plan the week as much as I can - I just can't do too much.  When I do too much and get too tired, my balance and speech suffer the most.  It seems if I KNOW ahead what kind of week I am facing, I do better - even if it is jam packed.  Two different Dr.'s (totally unrelated to my surgery) told me that I will ALWAYS be more tired in the evenings - even though your body compensates for that "bad" (or cut) balance nerve, you are still working double time anytime you are walking or standing.  I have always joked that I should be stick thin if my body is working that hard!  When I still taught (I am a stay-at-home mom now too - even though I am NEVER home!), my principal said she could always tell what day of the week it was by looking  & talking to me!  Last year, I would go to the gym at 5:30 a.m. - this year since all the kids are in school, I go after they get off - but mainly b/c we seem to have more "night-time" activities and I can't get to bed as early - just a give & take.  While I am SOOOOO happy for those that are able to get back to their pre-surgery self and not have ANY effects, it just is not that way for everyone.  Like we always say - EVERY AN journey is different!  Cut yourself some slack, you overcame great obstacles just to get where you are today!!  Fell free to PM me or if you like to chat, I can call you!

K

[Patti]

hi.  i am 8 years post-op and still get fatigued.  i only work 12 - 15 hours a week, but when i do (paralegal) a long day (for me) of 5 hours, i am useless.  my speech is affected.  my balance gets worse.  i can't function-just sit in my recliner.  when not working, i exercise.  i use weights a couple of times a week and walk fast for 45-minutes or so a few times a week.  the lucky part is that my daughters are away in college and my spouse understands.  what i am saying, is that i do try.  i have been doing this for 8 years and it has only gotten a little better.  when at work or at the gym, i am wonderful.  but i pay the price afterwards.  even with the kids gone, i still have to shop, cook, clean, etc..  i am on disability, thank God.  i used to be a teacher and sadly can't do that anymore.  the other thing-when i do alot on one day, i get affected for the next day or two.  Especially if i travel, even as a passenger.  pity party for me today-but heading to the gym later.  i am trying to be healthy and keep my weight under control without dieting (i can't deny myself food when i want it).  so-i empathize with you.  raising a family-especially a large one-is exhausting-and wvwn more extreme for a health impaired person.  i feel for you.  when my 2 girls were home, i couldn't just lay down whenever i wanted.  i didn't work quite as much or exercise quite as much, but it was still hard.  sometimes you have to lower your standards-less baking and occassional take out dinners!  good luck.  patti

[moe]

I am almost 3 years post with face and hearing nerve severed (sounds better than cut!). Great advice from the other 2 and I can ditto it all and relate to it all.

I used to be able to flit around multi tasking years back with 3 kids before the AN, though I was feeling like doo doo for years(more tired, dizzy,).  Now,the oldest 2 are in college, and teen at home. I still feel tired as if I'm chasing toddlers! Why? My AN journey/saga continues, and will for the rest of my life. You just have to adjust, listen to your body, and the rest is very important in the middle of the day. Some times it is 30 minutes, sometimes I'll fall into a deep sleep! Ah well, that is me. Usually I set the alarm for 45 min and do OK. It also helps me escape from the ringing (squealing).

I now am not as dizzy now, but get tired because of the emotional energy to get through the day with the deafness/ringing/ disequilibrium/

Anne Marie also suffers headaches, has 4 boys. I'm sure she could empathize!

Also, delegate some of those chores, if you haven't. Laundry is a good one. It is easy and painless and boring/monotonous. Put the boys in charge of their own laundry ("But MOOOOOOOMMMMMM."). Of course I still end up doing some, but it gets some of the load off of me.

Hope this helps. We KNOW what you're going through!
Maureen

[Dantheman]

Cecile,

I'm two years post surgery and am still fatigued. I do believe it is balance/hearing overload. The poor balance causes the fatigue and the fatigue contributes to poor balance. The two things kind of feed oof of one another.

I can't do many things with my family either. I just don't have the energy. Thank God I have a great, understanding wife who has energy for both of us and the kids.

Dan

[cecile k]

Hi all:

I just want to thank you all for your responses. I printed them off for my family to read.  My hubby is very supportive but, especially the boys, just don't have a clue what I'm going through but that is ok.

You know, I never real thought of the fact that, because my balance nerve was severed and I now have single sided hearing, my body has to work double time anytime I'm walking or standing. Well, I've come a long ways since surgery (basically relearning to walk again) and am thankful for the progress made. It IS wonderful to be in touch with others who truly know.

Thanks again!

Cecile

[yardtick]

Delegate, delegate, and delegate..........six of us live in this house, so six of us have to pitch in.  Some days I do get all that I have set out to do but more days than not I do not.  If I can keep up with the laundry and prepare several decent meals a week I am doing well.  I just find with the chronic fatigue, headaches and facial pain my energy is zapped. 

Anne Marie

[cecile k]

I know that I probably overdo things a bit when it comes to baking/cooking and should perhaps lean somewhat to buying instant/processed foods, but I have a hard time with this. Also, walking and staying somewhat busy seem to keep my headaches more at bay - I find it strange that sitting too much causes headaches to flare up more.... I am exhausted at night but just head to bed by 9:30 (this momma doesn't stay awake listening for teenagers to come home). I do try and lie down a bit in the afternoons as well.

As for delegating tasks, the boys are good with helping - can't complain there. And my hubby does a lion's share of the housework, but is a disaster in the kitchen :-)

Cecile

[moe]

Cecile,
Sounds like you are on the right track with help from hubby/husband.
Hopefully he can be the ears for you at night when you are ZZZZZZZZZZzzzzzzzzzzzzzzzzzzing.
I also remember just being too tired to listen up for the teens.
We survived though. 2 are in college, and the third is a stay at home kid. Now just get him off the computer at night, that's the hard part.
Wishing you nice naps.
I http:// my naps!
Maureen
 

[moe]

I love my napshttp://
Maureen

[yardtick]

Me too!!! 

Anne Marie

[Pembo]

I think I'm in the minority here. I've been amazed at how much MORE I can do since my surgery. For years before I knew I had an AN I was always tired. I could nap everyday, I could never keep up with my family. I attributed to having babies and such. I remember a trip to Disney with just my husband when my boys were little and I HAD to nap everyday. I could not function without a nap.

Since surgery I don't NEED a nap everyday...I'd like one, but I can function without one. My surgeon told me that my tumor had brain stem involvement which caused the fatigue.

I do need downtime now. I cherish my nightly baths...I need the peace and quiet. Recently I spent a day at home with workers building a room in my basement, followed by a playdate for my son, followed by a visit by my niece. I was very greatful when everyone was gone and I could be silent.  Also I've made the decision that I could never work full time and be a functional mom and wife. I need the downtime.

So for me, yes I still need quiet time but not sleep.

[moe]

Ah PEMBO,
You are lucky. I wish I DIDN'T have to nap, but I have severe tinnitus in the deaf ear, and my body just poops out.
I've always been a napper though.
The surgeons said I should have had my tumor removed 5- 10 years ago, it had been in there for so long, pressing against the brain stem.
So who knows, maybe after the years progress, I'll feel better, but until then........
I still have Menopause to look forward too! Oh joy!
Maureen