Author Topic: Living with AN -- The Silent/Invisible Disability  (Read 3367 times)

FLsunshine

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Living with AN -- The Silent/Invisible Disability
« on: November 02, 2010, 11:36:13 am »
For the past 4 years, I have kept my tumor and its affects on me pretty much a secret.  Doing so helped me deny it was even there but mostly because I didn't want people to treat me differently (friends or at work)... in the negative sense.  But with my recent escalating symptoms, and with the support of a great friend of mine, I've started to come out of the closet.  At first just putting in words what I was feeling (physically and emotionally) was really helping me regain control of my life with an AN in it.  I told the kids, I was more outwardly honest of when and how often I was feeling ill, I felt free.  But now the honeymoon period is over and my immediate family is really letting me down.  No one is helping with the cooking, grocery shopping, cleaning and they leave me behind as they do our normal outside recreational activities but I have trouble joining them now because of the awful fatigue and exertion triggering my headaches. Living with an AN is a silent/invisible disability -- no one can see you're "hurt" and so they just go on with daily life as though nothing is wrong.   

Last night I was feeling really bad and asked my husband to feed the kids and make me a fish sandwhich.  He made a wonderful, rich salad for himself but tv dinner for my son and for me he microwaved 2 pieces of breaded fish and handed them to me on a plate.  I think he took more time to feed the dogs then he did to make dinner for me.  So I got the bread out, the dressing, something to drink, set my plate and ate alone since they had not waited for me.  And this wasn't the first time.

Now I wish that I had never let them know how I was physically feeling and how afraid I've been with this AN and the escalating symptoms.  Because at least then they wouldn't disappoint me.  I know many of you say you have the wonderful support of family and friends that help you get through the tough times.  But for those of us that are "THE" rock of our own family, turning to them just isn't much of an option because they are so used to depending on you for everything that they have no idea how to take care of YOU instead. 

I'm sure there are others like me dealing with this.  How did you push through?  I hate to spend money on a weekly house cleaning but I may just have to tighten my belt and do this to maintain my sanity.  And, I'm a wonderful cook but may have to rely on tv dinners from now on.  I'm really trying to see how I can make adjustments instead of relying on my family to step up to the plate but it is very saddening since doing so only reinforces to me that I am not the same person anymore (I have limitations) due to dealing with this AN.

3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

yardtick

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #1 on: November 02, 2010, 01:21:26 pm »
FLsunshine,

I feel your heartache reading your post.  I too was the "ROCK" of the family, I too am a wonderful cook and yes there have been many times when my family has let me down.  I have a facial neuroma that was debulked 4 years ago.  I suffer from brutal headaches and facial pain and as a result of all of this I'm on disability.  Since I am at home my family expected me to be able to cook, clean, do the laundry and ironing without breaking a sweat.  My boys are 23, 21, 20 and 19, they are not little anymore and I feel at this stage in their lives they need to learn how to be self sufficient.  Slowly but surely they are getting it, I'm not well and this is the "NEW" me.

You have to reinforce the fact that you are not the same person anymore and they have let you down.  I know from personal experience that half the battle is telling your family what you are feeling, emotionally and physically.  First is getting your husband to be supportive of you and than together you talk to your kids.  Keep a journal and let your family read what you have written.  Have them attend a Dr's appointment with you.  Are you on anything for anxiety?  If you aren't, you may need an antidepressant.  Many of us, myself included are on antidepressants, the drug does help us cope better in general and some like the one I am on have pain relieving properties.

I hope things get better for you,

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Lizard

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #2 on: November 02, 2010, 02:37:41 pm »
I'm sorry you are feeling let down and I can totally understand how you are feeling, but really your family just doesn't get it.  They are probably having a hard time empathising with you you.  Try not to feel disappointed as they really aren't doing these things on purpose.  You will have to remind them over and over about how you feel, remember they aren't in your head...hang in there things will get better.

This reminds me...I purchased the book Living Well With a Hidden Disability, recommended by Phyl in the thread below, it a great book, an easy read and perhaps you can pass it to your husband when you are done.  See the thread No one asks anymore.... 

http://anausa.org/forum/index.php?topic=12345.msg142434#msg142434

Take care and hopefully you get this book it really helped.
Hugs,
Liz

Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

moe

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #3 on: November 02, 2010, 02:53:50 pm »
Hi!
I too feel some of the things you are feeling and can empathize/sympathize.

Four years post op, I keep reminding my hubby and remaining child at home that I'm not the same person.
 
He purchased baby chickens last May and now they are crowing roosters, with a few hens. NOT good for the tinnitus, which they will NEVER get.
 My son  (and daughter home from college) love them, but I tell them, "I don't do chickens." I refuse to get sucked into another chore~ They don't have a completely fenced area, so tend to escape........

So my  kids are older and I can delegate. How old are your kids? I fatigue very easily, with the tinnitus/deafness/equilibrium, and can't stand noisy places. Even car rides.

No one WILL ever really get it, except for those that have AN's. I pretty much still do everything but at a much slower pace. I'll cook a big batch of something, and just have leftovers for 2 nights in a row if need be. I HAVE to stop mid day and listen to music on headphones in the recliner or else go upstairs and nap for 1 hour. First thing I do when I come home is do just that. If anyone asks me to do anything, I say NO, I need to rest.

Sounds like your kids are still young,so that sucks. When you can start delegating more, a chore list is a must, for whatever it is. Putting out trash, setting table, putting dishes in dishwasher. If it's written down, then maybe that will help so you don't have to nag so much.
Definitely read the post about     No one gets it anymore......
There are so many out there who can relate.
Hang in there, do something for yourself every day, big or small :)
Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Brewers7

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #4 on: November 02, 2010, 03:26:06 pm »
I read the book too and found it helpful.
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Jim Scott

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #5 on: November 02, 2010, 04:10:00 pm »
Suzanne ~

I'm sorry to learn about your disappointments with your family's response to your AN issues.  Unfortunately, this is not the first time I've read about this happening.  I won't try to play psychoanalyst and explain all the possible reasons why the people closest to you can sometimes seem so insensitive.  I will say that change is always difficult and one cannot expect others to turn into different people overnight.  If you've been the 'rock' for your family until now, they probably can't understand why you can't go on being the same person, even though you have AN issues.  As you stated, your deficits are virtually invisible and so, easily ignored by others.  Frankly, some serious conversations need to take place with your husband to awaken him to the reality of your situation.  If that happens, the conversation should not be accusatory on your part or whiny, for that matter, as that will just start off on the wrong foot, as it were.  Tears should be avoided, if possible, because even if you don't mean to, your crying puts your husband on the defensive and can make the conversation seem like he's been tried and found guilty by you, which is not the way you really feel, I'm sure.

My wife of 40 years suffers with a variety of ailments; Fibromyalgia, Crohn's disease, spinal problems (many surgeries) and for years, I've taken care of the house cleaning and sundry other chores that she cannot perform.  She cooks all our meals (just the way I like them), grocery shops and, in my opinion, takes very good care of me.  Even with her deficits and limitations, my wife is quite active and rarely complains, unless shes really hurting that day.  We love and support each other in whatever way we can.  I hope that you and your husband can find a similar accommodation.  However, my wife and I have gradually learned how to do what is needed for each other.  It doesn't happen overnight or after one heart-to-heart talk.  Give your family some time but do let them know what is happening and that although you love them, you're just no longer able to do everything you used to do, even though you would like to.  Ask for their help.  Make it a 'team' effort, if possible.  I want to repeat that you should avoid being accusatory in word or tone or your family may get defensive and this will end up worse than before.  Don't talk about being disappointed with them.  Consider that they probably don't realize what they're doing and what they need to do to 'take up the slack'.  Of course, even in the best of families, adversity can bring out aspects of family member's personalities that are a bit of a shock and sometimes destructive.  I trust that won't be case with yours, but the caution should be stated. 

In the final analysis, you are a 'different person' in some aspects but at your core, you're still 'you'.  Don't allow your inability to do everything you once did to define who you are.  Don't let who you really are be determined simply by your ability to do the cooking and cleaning.  I clean our residence every day and don't give it a thought.   My cleaning does not define me any more than my wife's cooking defines her.  I hope your family, especially your husband, will be able to understand that reality and that you can help him do so.  That would benefit everyone.  I hope this post is not too presumptive but I felt it necessary to offer you more than sympathy. This is the result.  I trust that it will hold some benefit for you. 

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

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #6 on: November 02, 2010, 05:30:47 pm »
Liz, thanks for sharing this... and glad to hear that you and Brewers gained from reading the book. I highly recommend it for those here that suffer with issues not visible to those around us.. and with suggestions on how to cope with it. 

Phyl

I'm sorry you are feeling let down and I can totally understand how you are feeling, but really your family just doesn't get it.  They are probably having a hard time empathising with you you.  Try not to feel disappointed as they really aren't doing these things on purpose.  You will have to remind them over and over about how you feel, remember they aren't in your head...hang in there things will get better.

This reminds me...I purchased the book Living Well With a Hidden Disability, recommended by Phyl in the thread below, it a great book, an easy read and perhaps you can pass it to your husband when you are done.  See the thread No one asks anymore.... 

http://anausa.org/forum/index.php?topic=12345.msg142434#msg142434

Take care and hopefully you get this book it really helped.
Hugs,
Liz


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FLsunshine

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #7 on: November 02, 2010, 06:06:53 pm »
Wow.  I am so humbled by all of your VERY thoughtful responses.  Each one of you provided me with personal insights, something to reflect on, and most importantly actions that I can take to better the situation.  Thank you so much for taking the time to reach out and share your thoughts with me.  You've made it easier for me to go to sleep tonight... I won't have such a heavy heart when I close my eyes tonight. 

You and this forum really are the best. 

-- Suzanne
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

Kathleen_Mc

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Re: Living with AN -- The Silent/Invisible Disability
« Reply #8 on: November 06, 2010, 03:05:23 am »
Many of us have experienced a similar reaction from our family, that meaning the denial of our limitations. To hear that your husband won't cook for you the same as he does for himself is most upsetting and it makes me wonder if he is angry at you for getting ill (to make something nice for himself and only do a frozen dinner for you).
Has there been much family discussion about emotional reactions to your being ill?
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)