Sick and Tired !

[debora]

John,

Hang in there, you will get better.  Cuddle with your wife and have a glass of wine and remember it's ok to feel ****ty and mad we understand and have been there also.   It is not an easy load but feel proud that you can make it through this, look at how strong you have had to become because of this.  I feel that there are a lot of people who couldn't handle this but WE CAN and are.   I can't explain how your post affected me but I care very much, you are amazing and so valuable to us don't ever forget that.
With all sincerity (SP)  Deb

[satman]

Thanks everybody,I am better today,ok so I did a little self medicating to get my mind off of it.
In all seriousness, I knew I could turn to you guys for a lift,it worked.
all of your replies mean so much to me,only A N er's would understand.
thanks again,you people mean the world to me, and we have never met, funny how that works.
                                                                                       THANKS....

[Dealy]

John- Hope you are getting some comfort and Understanding from this site. Having an AN that size you had is amazing. I consider you a real WINNER. There has been days I say to myself-WHY ME of all people. Being an NF2 is no fun either. LIke you-their are days when I just get tired of it all-then I realize how lucky I really am. That sounds strange. I was getting to the point where I thought only of my needs and what I want and not other people. Well sickness has a way of telling you their are different priorites in life. I have a total different perspective on things now-so yes in a way I am lucky. People who have their health-wealth-etc. never seem happy with anything and find fault with everything. Heck-I am so elated now if I can have a decent enough day to function and say I made iT another day. I surely do not take the small things for granted anymore. Yes-even too be able to eat and sleep. I still have swallowing problems and if I do not watch tend to drool from my right side. The inside of my mouth all the way down too my throat is numb-including my tongue- I could go on and on- as for me I put it in the hands of GOD and let HIM decide what is best-what else can you do. STAY POSITIVE MY TEXAS FRIEND- THANKS-RON.

[4cm in Pacific Northwest]

Ron,

I have read some of your posts. Wow you are quite the super-hero too!  My hat is off to those on this forum that are NF2'ers... You folks are an model of extra strength and endurance to 'keep moving forward'.

4

[jerseygirl]

John,

I had a bad day yesterday also: I felt sorry for myself, my balance was off and I made mistakes in speech! It must be the weather! This is after Wednesday when everything was so much better and I congatulated myself on the progress made. Recovery goes in in zig-zag fashion and in myriad of small steps  and when it is prolonged, we get so tired of it. We all want to be back to normal ASAP! I am glad you are feeling better today. Hugs!

             Eve 

[Dealy]

Thanks 4CM for the compliment but I hardly consider myself a superhero. My wife and faith is what sustains me now-and this group. My heart bleeds for so many people on this group. We all have had our trials and tribulations. Some worse-some better than other's. I stll find myself looking back even a year ago when my hearing was good enough without a hearing aid-and sigh and think what I am missing. My wife has too tell me what certain sounds are because I cannot make them out. This forum has helped me more than anything-simply because-people here understand. Have a good evening all-and God Bless-and Please stop to smell the roses. Thanks-Ron

[Charlotte Lady]

Was yesterday just Suck Friday?  I had a bad day too.   Not nearly as bad as yours, Satman.  I'm sending you good thoughts the next week will be swell.  As for the paralysis and stuff, my healing showed up when I stopped looking for it.  Sort of the watched pot never boiling.   

I used to play with my drooping mouth.  I'd take a sip of water and squirt it out of the side in a little bitty stream.   It was fun.  I swear.  I almost miss it. 

When I was really bored, I'd hide in the bathroom and try to make my good side look like my bad side.  I could do the mouth; never got the eye correct.   

Take care of yourself

Donna

[Dfcman]

John,

I'm sorry.  You have my condolences.  I'm glad to see you're doing better now.  We all have our bad days.  Post-traumatic stress I think.  I hope you are going thru alot of therapy, facial, occupational and especially physical. It really helps.  Time is the great healer...thats all I can tell ya.

Chris

[Captain Deb]

This thread has really touched me, Satman, as you are a true AN hero, here.

After struggling for a number of years with a number of issues I finally have a near perfect life. I have educated myself as an adult (BFA at 45 yrs old, summa cum laude) married a great fella, live in a beautiful home overlooking the river, have 2 wonderful scallywag step-grandkids to play pirates with (every birthday is a pirate party,) 750 square feet of studio space, and have a gallery that sells my artwork practically before the paint is dry for big bucks.

To look at me you would never know I had an AN. I'm a good-looking 56 year old woman. My hubby thinks I'm pretty hot actually. I have a symetrical smile and both eyes blink at the same time (thank you Drs Friedman and Hits.)

I get up, have coffee, eat a piece of homemade bread and jam, change into my painting duds, go upstairs to my 750 sq foot studio, squeeze out the paint, pour the medium into the cup, paint a few strokes, and then the Headache Monster begins chewing on my neck and works his way up the back up my head. Then he takes his red hot poker out of his bag of tricks and shoves it into the back of my head! Poof! My day is over and it's 11:00. Paint wasted. Day wasted.  This happens about 1/2 the time. Sometimes I get a few more hours before he comes, sometimes I get a whole day. Lately, with hundreds of $ of meds every month, I have been getting a few more hours a day. When he gets really nasty I give myself a shot of Imitrex and poke him right back and he calms down.

So what we got here, you and me Satman, is a case of the WHY-MES.  Every once in a while the Headache Monster brings his friend, the why-mes along with him to stir up double trouble and then we got ourselves a huge mess:

(Being a visual artist, a visual is needed here)

 I try to fight them back with a dose of acceptance. This is the hand I've been dealt and I need to play it to the best of my ability, try to understand the message in all this suffering, if there is one, and learn to love the ones I'm with and be grateful for what I have.

This forum helps alot. Cave people sat around the fire swapping stories for healing and people have been doing it ever since. Thank the ANA for giving us this cyber firepit to keep us warm and keep out the dark!

Hang in there Satman. Surround yourself with people in the same boat and you will stay afloat!

Capt Deb

[Rc Moser]

I have accepted life will never be the same.  Let's face it we an'ers are going to have bad days, several a month and weekly, some even have it daily. Yes, it sucks and you ask yourself why??
But, I see people everyday that's got it worse than me. Then, I think lucky me I could be in there shoes. I know this does help and the doctors didn't tell you all the dirty little problems you may encounter after, but I still see some improvements ( little ones) and I think I'm still getting better after 4 years 3 months. I have read that if may take up to 10 years to fully recover.  I guess I can give it that much time cause it could of been 10 years I never had.  Your not alone most of us are going through the exact same thing.   Hang in,  Wonderful thiings can still happen!!!!!!!

[Soundy]

Glad you are feeling a bit better... Friday something must have been going around...

I told a friend I was sick and tired of being sick and tired... Got up in a super sucky mood
Saturday but had to put on game face and join the Girl Scouts in the county and go caroling
at the local nursing homes and around tha square ... by the time we were done I was overtired ,
wobbly and could think of nothing but getting home to my bed and hiding ... but felt better
in that part of me that counts... saw so many much worse of than I am ... I accept I am no longer
the exact same person I was before surgery ... I have to re build my life and activities to make
them match the Brenda of today

this is a great thread... we all have these days and it makes me feel less alone in this post surgery battle
against all the little things that add up and try to squash me ..

[yardtick]

I don't think I can add any more to what has all ready been said.  I've been trying to get my husband to realize this is my life now and things are going to change again when I have the nerve graft. 

Friday evening I was shopping with my cousin in a lady's shop and the sales woman said to me dear you look so tired.  Teresa looked at me and said Anne Marie look in the mirror.  My left side of my face was sagging.  I see the specialist Jan 10th.  Go figure, just my luck, it is time to talk surgery.  I've been having more bad than good days.

None of us asked for this but we have to make the best of it.  My 17 yr old son's friend has been fighting cancer for 2 yrs now.  Get this it is her 2nd battle.  Ist when she was 15 mths old and than it came back with a vengeance when she was 15 yrs old.  Last week Anthony told me her bad cannot take any more chemo.  Yesterday she was rushed into Sick Kids @ Mac where my husband works.  He happened to be on the ward.  It doesn't look good.  Her parents are devastated, they have no other children. 

I'm not making lite of our illness, I too have some extremely offal days.  My work review sucked because of this but I know there are worse things out there.  I hope I can hold it all together for my son if something should happen to his friend.  I'm emotional on a good day.

Anne Marie

P.S.
Satman you are a HERO!!!!  Your journey is incredible and it has given me so much hope.  Thank you for sharing.

Capt Deb you are amazing, your wit and humour really helps to keep me going.  Now what about that art?  I'd love to see it!

[nancyann]

Anne Marie:  You must have been in shock when you saw your face sagging !      I wonder if you should wait 4 more weeks without calling your doc?
Thinking of you,   Nancy

[Captain Deb]

Anne Marie,
Marking Jan 10th on me calendar as a pirate sox on day! I'll message ye me gallery's website.

Capt Deb

[pattibobatti]

Hi Everyone,

I don't posst nearly as much as I used to, but reading this thread makes me feel very emotional.  I had all the paralysis problems (still have some)  and I just feel so bad when I read about you all.  It can be a hard road back.  It has been 2 years now for me and although I don't look exactly like I used to, I look pretty good.  I will continue to have a few days here and there when I sit down and have a good cry, but also have most days that I like the inside of me even better than before I had the AN.  I feel like a understand my life better and there is a calmness deep inside that I did not know about before.

I hope you all can feel mostly good.....  You are all heros.

Patti