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does anybody else

tn2209
  • By tn2209
  • Posted October 20, 2009 at 7:18 am · 16 replies
  • In Off-Topic
  • Shared with the public
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does anybody else get down in the dumps and depressed and feel like theres no hope after readin some of theses discussions

Explore topics in this discussion:

Anxiety Cancer HIV and AIDS Surgery Scoliosis Depression

16 replies

Veronica1117

I wouldn't say depressed, but yeah, I do get down in the dumps for a bit sometimes. I mean, I have this condition (inherited from my mother) and my almost one-year-old son has it, too. While I don't like the way I look and while I hate that I have severe scoliosis that surgery couldn't correct, I like a happy life. I try to focus on other things...my church, my husband and son, my baby girl on the way, my friends and family, my hobbies. This site, while it provides a lot of information for those who want it, and while it provides support for those who are looking for it, can also be...well, as you said it, depressing. Hearing of the cancer cases, deaths, people having limbs removed...it's hard and scary to hear about.

I try to live my life and NOT think about this. While this site is wonderful, now that I am a part of it, I think about my NF every day...which is something I am not used to. It's harder, too, now that I have a child. It's one thing if something happens to you (or there is a risk of it happening), but when you think about your child going through those things, it's worse (in my opinion).

So, you are not alone in how you feel after reading these discussions. Just know that it's information there for the taking. It's hard, but try not to dwell on it.

:)
Veronica

CindyLouWho

It use to bother me more than it does now. I'm most affected when I read of a child passing from NF and there have been a few occasions where I've had to separate myself from the BB for that reason. When I start to get overwhelmed then I know its time to take a break. Still, I always find myself back here eventually, sometimes to my own surprise.

Most of the time however I'm really aware of the fact that what we are reading is just one person's journey. NF is far too variable and too full of surprises to try to predict the future. And why waste NOW on something that may never happen later? As horrific as NF can be, I also truly believe that there are many good reasons to be hopeful. I really work at staying focused on that. I still get a case of the OMG's every now and again but fortunately it never lasts very long.

Cindy

onesevenmatrix

Yes I am often am depressed. Sometimes I think about holding a shotgun to my head and you know the rest. The only think that keeps me going is my kids. I also have to tell myself that even though I will never be a pro athlete, or a sears model at least I can walk, talk and go to the bathroom. Basically, it could be worse. I also keep hope that a cure or at least a treatment is around the corner.

sweetiecat

Yes, there is always hope.. Look at HIV and AIDS it is a treatable disease... I do get scared when I read in here but, I like the information I get. I feel especially sad when I read about a child passing away or of amputations..also the cancer scares me... more than the negative I find this site very encouraging...remember 60% of NFers suffer with depression and anxiety disorders... it's apart of NF.. it's not your fault! Have a great day!!! and yes, it could be worst.... I can feed myself, go to the rest room, bathe myself, and most importantly feel sex!!!! LOL just kidding there! ;) I can't believe I said that.. totally out of my character..yikes!

stumpythebumpy

I actually try and stay positve when it comes to NF.what will be will be.I will cross any bridges as they come and not fret about the next one and what it will bring.
I am happy to have ran across this web site tho! i am developing some good friendships from peeps i have met on here.

glen4cindy

I can easily find myself getting depressed when I read alot on this website. I have to look at my own situation, and see that it could be worse, much worse than it is. I know a person at my church that has it way worse than me. She has large plexiform's on her hands and arms. Many people have it worse than I do. But, God is greater. God is bigger than this disease. And God can help me get thru each and every day. That is what I lean on. For me, it is a great help in my time of need.

Sumatra

I look at it as it's my cross to bear. better me than somebody else, but yes, there are times when I think of killing myself or just walk off one day just me and the dog. I get so tired, so tired of trying to put "the game face" on and so tired of fighting what seems to be a loosing battle. Secretly, at times I wish I had cancer or HIV. At least there are treatments that would make me feel there's hope, instead of powerlessness and hopelessness. it wouldn't be so bad if we didn't have the daily reminders that we aren't "normal". I want my life back....

katygirl

I know my daughter suffers from anxiety pretty bad, its almost paralizing. I know its hard to read some of the posts' on this board. I do have to say though... its very
comforting for me to know that I can come to this board and talk about anything related to NF and there is always someone to extend a few words of encouragement. Not to mention all the information on this site.
I guess its smart to take things one day at a time.
slow and steady.

dreamer98

At times I know how you feel. I wish more people could understand me and what I go through. No one else in my family has the disorder and I have very few friends. The thing that bothers me the most is the crulety of others and how they laugh, point, and stare. Right now I am most saddend by the fact that guys won't give me a chance when it comes to dating or relationships. I always try and be honest, but in the end they always find some excuse why it won't work out.

I am shy and have a hard time trusting others because of all the bullying I faced as a young child. I know I was born different and have a special purpose in life, but somedays I really wish I knew what it was. In a way I am lucky because I have overcome and surprised many expections from the doctors, teachers, etc. It wasn't easy, but with hard work and support from family I persevered. In a positive note the best thing that NF has taught me is to see the world in a different way and accept others for who they are. I am honest, caring, understanding, accepting, and compassionate. I know I am a beautiful person both inside and out. I just wish others could relate and undertand why I am me and the values I have.

kellyjoe

i am encouraged by the many people who respond to each other in kind understanding ways on this site. its good to vent also to someone you dont know well and if they are going through it too who better understands.. i am not dealing with nf but my husband has a brain injury from a chemical exposer at work and a underling diagnosis of fahrs a rare diese that can be heredity that causes parkinson alzheimers symptoms we have a 1 year old daughter and she along with support of family and church friends and our faith in better days keep us going..God cares for us all and knows the every tear we shed but he also sends people in our lives that give us joy life is precious and we dont know any of us how many days we have to live so i choose to spend them the best i can and to the fullest...kellyjoe

wpcooper

i try not to get in the dumps...sometimes i think i don't even have the diease until i reach into the refrigerator and see my arm covered with small bumps.

I'm more worried about the pains and some of the ones I cannot see.

I had a pretty big surgery years back and almost died.

sometimes i think i can wish it away...

TaniaJ

These discussions are not always about the negative aspects and not everyone has a bad case of NF.

I only recently joined as my husband and two children have NF and my daughter was denied entry to the Australian Navy because of it.

I have found a lot of information and received alot of support from people on this site.

We are appealing the decision from the Navy as anyone with NF should be looked at as an individual and not a disease.

It is with the support of the people on this site that we will fight for this small change.

Small changes make a big difference.

Best of luck to you and cheer up. I am amazed by the courage and helpfulness you feel from speaking with a lot of people on this site. Just ask anything and someone will help you.

Tania

tn2209

yea my dad got discharged from the services him self i think if we want to fight for our coutry we should be able to the disease dont change who we are as americans we deserve the right to fight to

DonnaB78

I get depressed too but than there are people worse off than me! as long as i can walk around and do all the things my friends can do then i dont feel as bad!!

DonnaB78

I get depressed too but than there are people worse off than me! as long as i can walk around and do all the things my friends can do then i dont feel as bad!!

pjkd

I get down

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