Author Topic: I think I Am Going Nuts ...  (Read 10946 times)

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
I think I Am Going Nuts ...
« on: June 29, 2009, 11:57:01 am »
or maybe just a bit depressed ... sometimes I'm not sure anymore

I have my headaches under pretty good control since starting lyrica and working to get the dose and timing right and
thought once that happened I would be able to cope with everything else ... the ringing in deaf ear the roaring in hearing
ear dizzy spells etc ... and most of the time I do and function well ... I just finished a week of directing Girl Scout Day Camp
with no major issues arising ... my kids seem well adjusted to the little changes we have made in routines since my surgery
almost 2 years ago (2 years on Thursday)

but lately I am at loose ends when things aren't right ... I went a little nuts last year when I met my one year anniversary
and I am hoping that this is just an anniversary bump I have hit ... my memory sucks ...I used to have a dozen lists in my
head and get everything on each one done ...now I write a list and forget to carry it or lose it all together... and I am so
easily distracted I almost burnt the House down last week ... I can't stay on task without someone else around that knows
what I am suppose to do to push me back in line ...I got through Day Camp with an assistant that made the schedule and
posted copies everywhere so I would always be where I was suppose to be ...most of my time was spent in the craft area
since that is my specialty and didn't have many problems there...

Tuesday when we got home I had several things do get ready for the next day ...I had made list during camp of request
people had so I could run by Walmart before camp started and pick stuff up since I have the one and only check book for camp...
I put the list on the fridge ...

one thing was someone asked if I had found her something to make a SWAPS ( S pecial W hatchamacallits
A ffectionately P inned S omewhere ) that looked like a record ...we had a music theme ...anyway , she needed
them by Friday ...I bought a pack of poker chips and was going to spray paint them black and give them those little reinforcements
for holes in paper to stick to the center as labels and a pin back ...I had everything she needed and just had to paint the poker chips ...

I had put a pan of Chinese dumplings on the stove ... the were simmering ... I go out front door and head out back to get a scrap of
plywood to lay on the porch to paint them ... as I am headed for wood scrap pile the chickens ran to the fence wanting fresh mowed
grass ...I have an area that is just outside the yard boundary that I mow strips from and feed them grass a couple times a day... so I am
distracted and go cut some strips ... the girls are raking it to toss to the chickens and I look at lawn that has not been mowed due to
me not being able to hold out long enough to do it all and Bo has been in hay every spare moment of his time ... so I had just been
mowing right around the house ...but it was the coolest day we had last week and the sun was low enough to be throwing shade on
the back yard ...so I start cutting ...and cutting and cutting ...

then my stomach growled and I remembered the dumplings ... I abandon the mowing and run for the house ...fell because I don't run
anymore because fast movement and me don't get along .....pick myself up and go again  at a steady  fast pace but not running , up the
steps and open door coming out of my bedroom ... black smoke billows out ...no alarms are going off ..we put batteries in them when
time changed ...usually you can see from that door down the hall through dining room and kitchen and out the kitchen door 65 feet
away ... but I can see nothing ...the only clear air was about 18 inches or so from floor up ...I slide the thing to hold the storm door
open and crawl to the kitchen ... get a lid from the pan cabinet stand up and put it over flaming dumplings ... take pan and go out kitchen
door and set it inside the grill ...back to door to open it up ... then go around the house to open front door ...

the girls had followed me into the house  even though I told them not to ...they crawled around opening windows  then got out ...
I let some smoke clear and then went back in to turn on all the ceiling fans ....came out and watched smoke come out the windows
and wanted to puke ... the girls were treating it like a big adventure ... they were not scared enough if you ask me ... I was scared
out of my mind at what could have happened ... what if it had been at night ??? and I had left something going and we all suffocated ...
I have forgotten things on the stove and have gotten into the habit of setting the timer on the microwave so that it buzzes and
reminds me ... didn't set it that day and wouldn't have mattered since I was too far way to hear it ...

I am so easily distracted and have almost zero concentration since surgery that I leave a trail of half done things behind me every
where I go ... and for most part it is just a nuisance ... but this was serious ... Bo was like don't worry about it , it could happen
to anyone and I know it could ...but it is happening to me all too often ... this time it was just almost devastating ...

only casualty was my pan that warped and the house smelled smoky .... I got to it before overhead cabinets caught fire ... smoke
killing sprays and elbow grease to get some smoke off the kitchen walls and house is almost back to normal ... had it been something
frying things would have turned out alot different... luckily they were in water and took a awhile to boil that out before they turned
into little charcoal bricks and flamed up ...

I am tired of feeling bad and forgetting things and losing things and not being able to concentrate long enough to walk from front
door to shed and back a 2-3 minute trip at most ... I have laughed some things off because I have survived this whole AN trip through
humor ... but I am not laughing anymore ... I feel scared and the confidence I had gained that things were getting better is shot to
pieces ...

I told my husband the other night that I wish I had just left the tumor in my head til it did me in ... something the doctors estimated
it would do in 8 months to a year at rate of growth ... I would just stop breathing ... the end ... but before surgery I functioned better ,
felt better and was just more me ...now I don't feel like myself anymore and I fear I will really mess up worse than last Tuesday ... I
really want to be alive and see my last two kids grow into adults ... but I am greedy and want my old self back ... I scared Bo with my
comment ... he picks up slack of things I have not finished and never complains ...he is always trying to get me to take a nap like
a nap will cure everything ... he doesn't know what to do and I make it worse cause I am stubborn and tell him to leave me alone
I will do things my way ...

I don't want any advise really ...just venting the only place I know I am understood ... my I will be 10 years old in 31 days child ( she is
counting down)came by a little bit ago as I was typing this and asked why I was crying ... I told her my eyes were itchy ... I feel so
not understood here ... they are just glad I am breathing and can't see or feel what I do ... so what if I can't ride a bike anymore ...I
can walk along behind them ... so what if I can't bounce on the trampoline anymore ...I can take goofy pictures of them flipping around
... so what if I watch TV with light on because in dark rooms the flickering makes me nauseated ... the show comes out the same ... they
don't see the little things that drive me insane and think all is right with the world because Mom / wife is alive and breathing

the dismissal of the near house burning as something that could happen to anyone bugs me ...they excuse all the mistakes I make and
I feel like I should be made accountable someway ... not so much punished but it shouldn't be just excused ... I know what I am
trying to say but not finding it ...

just want to say thanks for being here ...I need this place badly some days ... I come often and read and glean tidbits of wisdom ...it
gets me through the bad days knowing I am not alone ... things will get better ... they always do when I fall into these funks ... this is
just a bad one ...knowing I could have cost us our home or in another scenario killed one or all of us with a night time snack gone wrong...

I am going to get myself an anniversary cake and present and celebrate Thursday as a new beginning ...I thought by now things would
be over as far as recovery and even though most days I do great (well good) I know that recovery may be the wrong word ...
living with would be a better phrase ... reading the things I have written here in full confidence then having that shattered
has done something to me ... I have told people to be comfortable with their new self and thought I was but now wonder if I ever will be

and this has run on too long ... I have to go to town and get dog food that I forgot Saturday ... the dogs are starting to meow as they
have ate cat food since Friday ...and I guess I need to get cat food too or  the cats will be eating dog food in a day or two and will be
barking

thanks for being here

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: I think I Am Going Nuts ...
« Reply #1 on: June 29, 2009, 12:57:11 pm »
Soundy .....

I didn't know whether to laugh (with you ..... in a good way!) or cry.  You obviously have a wonderful sense of humor and it is distressing to know that you are in a low bump (what's the opposite of bump???  ???).  I hope just writing about your feelings has released some of your fears.  Many of us on this Forum can greatly identify with the memory issues so please vent all you want or need to ..... we're here to listen!

With all you are trying to keep track of:  household, yard work, kids, how you feel, things to buy, places to go/be ..... to say nothing of having had an AN, it is small wonder that you are more distracted these days!

My prayer is that you will hang on to your inner logic and know that these moments/days will pass!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Adrienne

  • Full Member
  • ***
  • Posts: 199
  • I'm a postie now, and it feels so much better!
Re: I think I Am Going Nuts ...
« Reply #2 on: June 29, 2009, 01:04:30 pm »
Soundy,

It sounds to me like you aren't done mourning the 'old' you yet.  I was getting frustrated with something this morning and a friend called.  They were telling me a story about having dinner with a friend of theirs that is a neurosurgeon that does this type of surgery (not mine).  They were chatting about me, and the surgeon said "That is MAJOR, MAJOR surgery.  It's HUGE.".  And it's not like I don't know that already, but at that moment it was a good reminder.

You've gone through something so huge, and it does take time.  That doesn't make it any less frustrating while you're going through it though. Sounds to me like you need to step back from the every day stuff and take some time to concentrate on all the good things.  Like maybe some cool milestones that your kids have hit over the last little while.  Or a fun event that you've attended.  Or something that brought you joy.  There are so many of those moments still to come, and you have a lifetime to experience them.    Also, I think it would be helpful to try to find reminders of what you were like right when you came out of surgery.  Or a month after.  Surely you are much better, and seeing (or reminding yourself) about those accomplishments and improvements will help you see that you are improving.

(hugs).  Hope things turn around quickly and that this is just an anniversary 'bump' in the road.

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Darlene

  • Jr. Member
  • **
  • Posts: 94
Re: I think I Am Going Nuts ...
« Reply #3 on: June 29, 2009, 02:47:29 pm »
Soundy,

For what it's worth I have your kind of days somewhat often and I havent' had surgery yet!   Sometimes I think we are being reminded that we are doing too much.   I have a friend (not AN)  who was convinced she had ADD because she would forget things etc,  she went to a neurologist for an evaluation and he said you are  just doing too much.  I read what you had to do in a day, never mind  add in girl scout camp and felt overwhelmed immediately.  Honestly, most other people don't have as much going on... try to take it easy. I know easier said than done!  ;)
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: I think I Am Going Nuts ...
« Reply #4 on: June 29, 2009, 02:50:51 pm »
Soundy ~

I'm glad you feel confident enough to do your venting here.  We want it that way.

I won't offer any advice because you made it clear you didn't want any and I respect that.  I'll share this with you, though - when I read your message, my first thought was that you remind me of myself in many ways.  In person, we'd very likely be at each others throats in about 20 minutes because I'm probably just as impatient - and independent - as you are.  It appears as if you're very fortunate to have a husband who - even if he can't really understand your darker emotions - cares very much for you and only wants to help you, although he has no idea how to do that and you aren't responding to his admittedly futile attempts.  He's probably like me when my wife is hurting (physically).  I'll offer to help but really can't 'fix' her pain so I say something like "rest" - and I'll just hope she feels better soon.  Not much, but all I can do.  Perhaps he's a little frustrated, too.  Guys usually are when they can't 'fix' their loved one's problem. 

I 'm very sorry to learn of your setbacks and feelings of despair.  That your family is just happy to have you around and can't relate to your feelings of despair (due to your deficits) is perfectly normal but your feelings of frustration are equally normal, as you probably realize.  Obviously, at this point, you're not the person you want to be.  That is typical for most of us, post-op and it will take some mental recalibrating and the self-imposition of some physical boundaries as well as an acceptance of the 'new you' as still worthy and useful to your family, yourself and society before you're able to feel whole again and find life fulfilling.  From your posts, I don't believe you'll allow yourself to be in despair for long...you're too busy. 

I hope and will pray for you and trust that your indomitable spirit and keen sense of (sometimes droll) humor will see you through until you're where you want to be.  :)

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: I think I Am Going Nuts ...
« Reply #5 on: June 29, 2009, 05:10:53 pm »
Soundy,

Your not going nuts. You are experiencing a number of AN blues as i call it. Albeit not a lot of comfort tyo you but you will have seen a number of posties dexcribing their different issues as a result of treatment.

My balance isn't wonderful, my memory is also shot - a real struggle with my work as I re-engineer businesses and i have to take copious notes. And the headaches - well, that seems to be a rather popular one unfortunately.

The thing that keeps me going is a positive mindset, knowing that i have all these issues to deal with and feeling really annoyed about them, I look at each day as it comes and try and be positive about it, ensuring that i have at least one laugh (albeit fake) a day. I try and think of something funny and just go for a big belly laugh. It does help - putting a smile on the dial.

I'm sure that you'll find what works for you.

cheers


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

cin605

  • Hero Member
  • *****
  • Posts: 810
Re: I think I Am Going Nuts ...
« Reply #6 on: June 29, 2009, 05:37:15 pm »
Don't worry soundy......we are all nuts!Some of us plates n screws too! ;)
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

ernie h

  • New Member
  • *
  • Posts: 41
Re: I think I Am Going Nuts ...
« Reply #7 on: June 30, 2009, 01:46:59 pm »
i can totally indentify with (all) of your feelings.i'm almost 2 yrs post op.aug 07.i don't have the answer i wish i did.i'd gladly paas it on.itis very diffucult to keep on keeping on when there doesn't seem to be light at the end of the tunnel.thank god for this site and the wonderful compassionate people on here.what would we do without them.my best wishes to you and to all.sincerely ernie.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

JudyT

  • Full Member
  • ***
  • Posts: 123
Re: I think I Am Going Nuts ...
« Reply #8 on: June 30, 2009, 04:05:04 pm »
Soundy and all........I don't think I'm going nuts.....I KNOW it!!!!! I totally hear all of you. I am 4 years out from CK and worse than ever....added in now is the cuckoo thyroid issue that they can't seem to get regulated properly. My headches, balance, nausea etc. are horrific. I am flying from California to NYC and on to Conn, early 7/2 am. Want to go...love it there but frightened due to my issues at present. I am going to go.....period..... but kind of nervous about it. Bless all of you that have families to care for....and all that goes with it......jobs etc. I do well and sometimes not......to take care of me.
Thank you all for your honesty and caring.........this is the only place I can share and be heard fairly.


Judy

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: I think I Am Going Nuts ...
« Reply #9 on: July 01, 2009, 02:59:48 pm »
Thanks for all your comments and understanding ...

Jim ... I doubt we would be at each others throats ... I have the ability to turn off my more dominating bits of personality
when I sense a  confrontation looming up... I was raised with constant battles going on around me and developed  a
valve that shuts things off in me and anyone can say just about anything to me an I don't react ... I refuse to confront
anyone ...I think this is a flaw that makes it easy for people to think I am alright ... I learned to shut off as a self preservation
method and continue to do it ... not always a good thing ... worst of all people don't ever know that I am really sad ,mad
or happy ... I can go bland if you will and smile while feeling like I should be crying ...

I feel less crazy today... been just taking it easy the past two days and ignoring things I should be doing ... late afternoon
swimming to avoid the sun , lazing around watching TV or reading and basically ignoring the world other than feeding people ,
taking baths and things like that ...

I have not decided what I am going to gift myself with ... something that will have meaning when I look at it or something totally
frivolous ... thought about new thing to go with Wii fit ...also thought of a print I saw in a window... and I am getting a
Happy Re-Birthday Cake and making a meal that I like instead of cooking to suit the family ... I cook for them and just eat ...
there are many things mostly veggies that I love and they all shun... they won't starve but the meal will be for me ...

I have been working on a speech to deliver to them all ... they probably won't remember what the cake with a 2 on it means ...
I think I have held too much in to spare them and it is gonna get me in the end ...  they don't have to totally understand but
after speech they are gonna understand something ... not sure what it will be ... but what's the worst can happen ... they are
mad a day or two or hurt a bit ... I have been mad and hurt for two years and have largely ignored it to spare them ... they
need to know this ... and I will start my speech with I love you and end it there too ...

one of the few friend I have that comes close to getting it said I don't do enough for Brenda and wants to go shopping to
help get my wardrobe perked up ... she says one dress , two pair of jeans , three dressy blouses and a blue million T-shirts is
not acceptable ... and she says I need to dye my few gray away ... I draw the line there ...I earned them all

and she said that she would pick up girls so I could deliver the speech to Bo alone then talk to the girls later ... but I am gonna get
them all at once ...we are in this together right ??? ...besides I can't do it twice ...

 also bought all new smoke alarms even though when I tested them  post fire they went off ...what good is them going off
when I push a button but not when there is the real deal... and I can hear them from outside ... baby steps ... friend also said I
need to tie a sharpie at stove and when something is in or on it put a red dot on the top of my hand .... a blue sharpie tied at
outside water hydrant would remind me I have water running into the pool and not over flow it running water across the yard
(but that nice greener strip of grass says the lawn didn't care  :D)

not sure about the sharpie system but something like it could help... I saw a show that had lights that were on over a stove or
washer when they were on  or blink when phone rang for deaf people ...just little reminders ... my deafness didn't contribute to
the fire but the ideas on the show were good ...just needs adapting to not so much improve my memory but give my brain a
nudge if I veer from my course

thanks for all the understanding and compassionate people here ... this has been a long and bumpy ride ... I thought I had reached
smooth roads but have found more pot holes ... need to smooth them over and get on with life... I think when things are going
well I get too confidant and wreck like last week ... like Judy said ... this is the only place I feel confidant I can speak and be heard
fairly and understood ...

recovering in Tennessee ( and planning a party  ;))
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: I think I Am Going Nuts ...
« Reply #10 on: July 01, 2009, 04:22:04 pm »
Jim ... I was reading on th nothing Works thread and found your response interesting

I have done like your wife and always say I am fine whether I am or not ... along with the AN I have SLE (lupus) and all the
little syndromes and quirks that go with it to deal with.... both AN and SLE are pretty much invisible and I get the but you
look OK all the time  ...also trying to develope full blown diabetes ... sugar runs high a while then I have issues keeping
it high enough

one thing with lupus  is staying out of the sun as much as possible to ward off flaking skin , muscle and joint aches and
nausea to the point of vomiting ... also have Fibromialgia , arthritis and  a kidney that is trying it's best to quit on me ...
and I am fighting it tooth and nail ... darn thing has a nice warm snug home and all it has to do is process a little pee for
me and it doesn't want to anymore  >:( ...probably due to lupus damage but they aren't really sure ...

Last week Girl Scout Day Camp like to have done me in ... I was in a building most of the time doing crafts as each
group came through , with as  few as possible trips to the sunny outdoors ... most of my staff knows why I stay in ...
as much because I need people to know to watch for changes that may signal something is going wrong and that I need
a drink or to sit down or a peanut butter and honey sandwich to bring up sugar and stabilized it ...and ones that don't
know I felt didn't needed to know ... when a comment was made I kinda just said I can't take the heat or pulled the
I am in charge card .... some that did know and were kinda my watch dogs drove me insane asking if I was OK... it was hard
and tiring but kinda had to do it ... mentally it did me good (for most part) even if physically it wore me out ...

I have did very little since packing up Friday and leaving park ... most of Saturday was spent dosing ... did read a whole
book ... Dear John by same guy that wrote Bridges of Madison County I think ...memory sucks .... and had my break
down of sorts ...feeling better but ...

I am wondering if always saying I am fine is the answer... I wouldn't tell just anybody h**l no I am not fine ...but being
truthful sometimes I think would be a good thing ... I have found that even with my family that I give the I am fine answer
and go on and sew on those buttons or make the special mac 'n cheese with ham and cool it then dice in some
fresh tomatoes ..even if all I want to do is go lay down or hide in the shower letting water sooth me ...

I still have my prayer rock in my pocket and rub or hold it alot of the time and when I am not toughing it I know it is
there  ... I can hold it in my hand and not have to look at it and it focuses my thoughts and calms me ...sensible side knows
it is just a rock but that little part that believes in it makes it work ...and now I am veering off and making less sense ...
after my down I am going to a high point because I have made some decisions to bring my family closer in to my problems
in hopes of making them more aware of what is going on inside me and what I have to feel everyday ...open their eyes
if you will ...

I run into getting in over my head by not saying NO and saying I am fine with both Scouts and PTO ... I have watch
dogs friends (self assigned to take care of me whether I want it or not) around me for the most part that either help me
or tall me say No ... but they can't be there all the time and then my family that for the summer I am with around the
clock don't know as much about me and what's up as my friends do ... totally confusing situation for me ... and not really
explaining it well ...

and you are right I am sure Bo is frustrated and confused at times as to what he should do or say ... he just wants me to
be OK and for him putting me to bed and trying to pamper me is what he does because he doesn't know what else to do
and he is a softy and a pampering kind of guy and I don't take well to being papmered... even my I will be 10 in 29 days
 child doesn't know what to do ... she brings me drinks without being asked to and tries to feed me several times a day...
she made me a cup of hot tea a little bit ago and I drank it rather than hurt her feelings even though it was 95 on the
porch where I was sitting to do some paper work and hot tea would have been my last choice in drinks .... I could
have just asked her to let it cool and add some ice ....we have a communication problem ... I think some people need to
know we are not OK if we aren't at that moment ...

and for most part I am , if not perfect,  OK...if I can function and get essentials done I consider that OK... but the
not OK moments sometimes overwhelm me and keeping them to myself does me and therefor those sround me no good
as I melt down

I don't want to be a Me Me Me person but wondering where the balance is in all this ...

this post made better sense in my head by the way   :-\
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: I think I Am Going Nuts ...
« Reply #11 on: July 01, 2009, 06:49:11 pm »
soundy,

I've been following along and see what a hectic/busy life you lead... as well as trying to feel up to par as best as you can.  Me thinks you need that "ANniversary" Cake.... indulge in it (and have a slice for me.... massive diet here....) and just take each day as best as you can.  It really bothers me when the short term memory loss kicks in ... and I have post-it notes all over the place *looks at blue post-it on desk reminding of dr appt tomorrow...* and I was even thinking of having my PCP do memory testing on me....

No, you aren't going nuts... just a very busy person trying to adapt to much in life post AN treatment.. nothing more. 

Make it a chocolate cake please....  :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: I think I Am Going Nuts ...
« Reply #12 on: July 03, 2009, 04:11:08 pm »
Hi, Soundy ~

I'm flattered that you went back and read an old post of mine on another thread and found it interesting.  Your observations are astute and make sense. 

Although my wife is 'good soldier' she doesn't routinely put on a happy face.  Often, when asked how she's doing, she'll flash a wan smile and answer: "I'm taking it one day at a time" , which is a signal to friends that know of her health issues that she is struggling today - and to those who don't know, that she's O.K. - but not great. 

The fact that your family seems to be concerned for you but don't know what to do is probably pretty typical in families where the mom is not 100% healthy but pushes through it.  Frankly, when I'm not feeling 100%, as in the days immediately following my discharge from the hospital after my AN surgery, I 'shut down' and just want to be left alone.  My wife, having lived with me for over 30 years at that point, understood that and basically left me alone - after seeing that I had whatever I needed.  Sometimes, I just went to bed early.  She was fine with that because she understood me.  My adult son lived with us back then but had his own life and didn't worry too much about me because he entertains the whimsical idea that I'm immortal.  Poor lad.  He's in for a big shock one day.  But I digress.

I think your plan to use your 2nd AN surgery anniversary to tell your family that, despite appearances, you aren't 'Super Woman', do have physical problems that slow you down, cause you discomfort and sometimes discourage you and that you really need folks to recognize that - and cut you a little more slack - is a good idea.  You just can't do everything people ask - and seem to expect.  I suggest that your husband should consider acting as your 'buffer' when folks try to enlist your help for projects that, frankly, may be too much for you, as the past weeks activities seem to have been.  I often do this for my wife, Tina.  If she is asked to take on something we both think is too much for her I tell her to say that I don't want her to because she is dealing with (fill in the blank).  This gets her off the hook without her having to 'confront' anyone.  I have no qualms about confrontation, so if I'm there, I say it.  Of course, this makes a few folks consider me 'controlling' but my wife and I - and anyone that knows us - realizes that we're just partnering in her best interests, with her consent.  Well, it works for us, anyway.

My wife is my right arm in handling the church benevolence ministry I'm entrusted with, as a Deacon.   However, I know her (physical) limits and don't expect her to do so much that it drains what energy she has.  She's great on the phone, though.  :)  The point is that I try to help her balance the things she feels she needs to do and the realistic limits of her strength.  Fortunately, despite my advancing age (she's a decade younger) and my AN surgery, I inherited some good Anglo-Saxon genes and remain pretty healthy. I'm almost embarrassed about it, sometimes, when I learn what she and others (like you) have to deal with - but I consider my health to be a blessing and I try to use it to help my wife and others, as I can. 

I would suggest that when you have that 2nd AN anniversary family talk about your limits and your very real need for balance you try not to be accusatory.  You indicated that your husband, Bo, clearly wants to make you feel better but doesn't seem to hit the right note when he tries.  I suggest that if you don't like pampering you might want to tell him so.  Decide what you would really like him to do at those times - and tell him.  Most guys are clueless about this stuff.  You can't depend on them knowing what to do.  It's a family joke that I'm useless around a crying woman (any woman, any age, crying for any reason).  I never know what to do except pat them on the shoulder and mumble "there, there".  My son thinks this is hilarious.  Fortunately, my wife isn't a 'crier'.  At her worst moments, she weeps, silently.  That happens rarely and she's told me that if it does, to just hold her - and say nothing.  I assured her that I will.  Maybe that won't work for you and your husband but he needs to know what you want him to do.  Assume nothing. 

The kids are different and need to be sheltered a bit but still made to feel like they are helping mommy, too.  If you want a cold drink, ask for one.  That kind of thing.  Thanking them sincerely is also useful to give them a sense of accomplishment and feeling as if they helped you in some small way.  I don't believe in burdening children with adult's problems that they won't even understand but they can sense when you're not 'yourself' and they usually want to help - because thy love their mom.  Try to find ways they can do this, within their limitations.  I never patronized my son when he was growing up.  I didn't dump my adult problems on him (job, finances, whatever) but I tried to treat him with respect and told him what I thought he could process without getting upset and usually told him - in a simplified version - how I expected to handle the situation.   I wanted him to learn that obstacles and problems could be addressed and to not be bowed by situations.  I think it worked.  He's a good man and always has a 'game plan' for every situation.  This has really benefited him on his job - he's practically indispensable. 

I won't attempt to dictate your approach to letting family and friends understand that you need more balance and simply aren't physically capable of being everything to everyone.  You certainly understand the dynamics of your family far better than I do.  Dealing with friends can be just - if not more - difficult but if they're really your friends and not simply acquaintances of convenience they'll have little trouble understanding that you need to pull back a bit.  That doesn't mean you don't care or refuse to help others but that they need to recognize your limits, too.  In my experience, you may lose a few friends who will jettison your friendship when they no longer see you as useful or perceive you as less than dependable to take on jobs few want to do.  So be it.  Life is short and we have to set priorities and boundaries.  If we allow others opinions to run our lives, we're going to sorely disappointed because we all know that you can never, ever, please everybody. 

By the way, Soundy, I've learned (the hard way) to reel in my impatience when necessary and just go with the flow, as it were.  We'd probably get along just fine as similar personality types and I trust that this prolix post will be of some little use to you in some way.  :) 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: I think I Am Going Nuts ...
« Reply #13 on: July 04, 2009, 06:21:02 am »
Jim

From me to you... thank you for sharing such an insightful and honest and heartfelt response to Soundy, as it resonates within me as well. Please give that wonderful wife of your's a BIG huggle for me (but don't squeeze too hard, ok? ;) ).  I know both of you have your good days and not-so-good days.... and I know you both know my mantra (day by day, inch by inch....)..... here's hoping today is a good day... and for Soundy and for everyone here!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Lilan

  • Sr. Member
  • ****
  • Posts: 372
Re: I think I Am Going Nuts ...
« Reply #14 on: July 04, 2009, 07:05:09 am »
Soundy,

I have not been able to keep up with everyone's full story but your avatar has always stuck with me, so I remember you (and your artistic child!)

Although this may count as unwanted advice, please let me throw it out there. I have a small suggestion from left field. Have you ever heard of the home organization expert FlyLady? Your dumplings episode, AN surgery or no AN surgery, reminds me so much of what many of her followers talk about -- just being overwhelmed, sidetracked and unable to follow through on tasks and keep on top of it all, be it because of kids, jobs, illness or all that and more.

Her writings may help you realize you are not alone* and provide some practical tips for managing tasks as "the new you"! She's at www.flylady.net and also has a book called Sink Reflections. She overcame a nervous breakdown and built an empire -- she knows what she's talking about!  ;)

* ETA: P. 101 of her book: "Don't cook things on High. Except for boiling water. We SHEs (Sidetracked Home Executives) tend to get sidetracked, so it is easy for us to burn a dish and scorch a pot, and this makes more work for us."  ;)

« Last Edit: July 04, 2009, 07:22:54 am by Lilan »
Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!