Vent your frustrations here!!

[Ali-Brad]

Lots of interesting reading in this post.

I think one of my frustrations is the saying, 'you look well'. I find myself trying to explain just how XX!!# I feel inside. It's not like I want to look ill, I just would prefer they said nothing and just chat to me. I never think to say to friends, 'you look well', because I know they generally are. I often think that if I could only transfer my pain to someone else for 24 hours and they could experience what it's like, they wouldn't say it to me again. I shower, wash my hair and put make-up on (nothing heavy) every day whether I'm in the house or not. I like to be as presentable as I can, but it doesn't take away the neuroligical pains, stiffness, medication dizziness, wobbliness, fatigue, sadness, etc, etc..

Maybe I'm just sensitive to this statement, but once you have illness people seem to need to comment on how you look.

Alison

[Gundestrup]

That line is a classic. I think they say it to mean a compliment but to me they are not seeing beyond the face. Sometimes close friends have said that I never talk about it and that I am brave. I feel like saying they never actually give me the opportunity to talk and when I do have a heart to heart they seem to forget every word the next day. I still have my tumour but because I am walking around people think I don't suffer and they do not realise really how much has already changed. I am bringing up three small kids, am on the last year of a part time degree and have always been an active doing person so to me I am totally hindered and frustrated and the anger boils up inside and I hate the world. Like other posts people moan about how tired they are or they have a bad cold or something minor seems to crush their world and I feel like shouting at them sometimes that they have no idea. But no I just smile politely listen to their problems. Don't impose cures or remedies just listen and be sympathetic and wondering when someone just one person will listen to me.

[chickiet]

WE will always listen to you. I know it's not the same as your family or friends, but I've come to realize that everyone on here really cares about eveyrone else and can definitely relate to the frustrations you're experiencing.

[mak164]

Hi Alison -

Now I don't see it that way. "You look well" at least recognises that there is some concern for your well-being. People are uncomfortable with illness/disability and may just be trying to look for a positive outcome. Well, most people perhaps.

[Tmasgio]

Okay, This will sound almost absurd but here goes:

I hate the fact that no one can tell what is wrong with me. I dont use a cane or a wheelchair. I have a normal gait. I can run,jump, and for the most do what I did before the surgery within reason. However, this is what makes me mad the most. If I complain about pain or stiffness then I get well you dont look like anything is wrong with you. You act normal! What is normal? I have no visible indicators so therefore I must be just fine. My Father said it the best. He said Son "Pain is Personal so never judge anyone".

Sometimes I wish I would sport the cane and then people will look at me a bit different but I guess I just expect that this will always be the case. The pain,stiffness...yada yada yada..

Whew... I feel better now! Thanks Joel for starting this new thread!

Tony

[Joel]

We all must realize that it is simply IMPOSSIBLE for anyone to understand what we are going through. Along with the other crosses, this is yet another that we must all bear. So--we smile, say thanks, we're doing OK, and then save the frustrations for this site. I understand. Like Bill Clinton says, "I feel yer paaain." I mean, if my wife, who's been around me with this for over 10 years doesn't really understand, then what chance do friends and strangers have? So, we bear it. Makes me sad. But it's reality. Sorry. I need a group hug.
Joel

[shannan]

I could type so much in this thread it's frightening....My new pet peeve, although frivolous, is overly helpful people, to the point of sickening sweetness. Going into an accessible building I cannot count how many people see me coming and have to push the door opener for me. I really am capable of pushing the large button myself. I understand they are just trying to helpful, but sometimes I feel like enough of an invalid that I don't need others to put the exclamation point on it for me. I know it's just me hating the loss of my independance and struggling with this....but I really want to take it out on some poor unsuspecting soul someday.

[msweeney]

I can really relate to people trying to help. When I was in the hospital I hated that I had to be cathed for several days and bathed and helped with everything. I couldn't wait to get back so many of the liberties I had lost. I will never forget the first day I drove by myself again after surgery. I screamed with joy after having to be driven around for a month by someone we hired. I felt like a child.

Every step back toward independence was hard fought. I hated for people to try to help after I had worked so hard to do it myself. I didn't like the looks from people and I hated it when people would hold the door for me.

After a time I decided to try not to have such a hard heart. Before surgery I always would get the door for pregnant women or moms with young kids because I remember how tired my wife used to get when she was pregnant or when the kids were so young and she was getting up at night for the feedings. It felt good to give a hand. So when the tables were turned I tried to swallow my pride and just appreciate that it may feel good for people to open the door for me. I figured that I wouldn't rob them of that pleasure or opportunity to feel good about a small kindness that they could offer.

After a while I just started to tell myself that I was lucky. I got to see a kinder face of humanity. When I cross the street, I notice that people in cars stop well before where they would for a person walking normally. Often they stop when they see me approaching the intersection even when they could easily get through before I arrived. I live in a big city and it can be a bit of a rat race. People can be so rude and impatient and yet they usually cut me a wider path and show me greater patience. That used to bother me as if I was being treated different. Well, I was being treated different. I was being treated with more kindness. Once I got past my ego, I thought how lucky I am to get to see this side of humanity. I try, as best I can, to be grateful and smile and engage people. It's pretty amazing to realize that people want to help and if they think you appreciate their help, they really feel good and it brightens their day.

I have a good friend who is dying slowly of ALS (Lou Gehrig's disease). Over the past several months he has become more and more reliant on others to do even the most simple tasks. He has done it with such grace and dignity. When ever I come and spend time or help him, he is so thankful. I told him that we, his friends, really loved to help him and that it made us feel good. I really meant it because it is true. I know how it feels to be dependent on others, even if it was only for a short time in recovery. I know how hard it is to ask for help or rely on others. It makes me feel really good to lighten that burden for someone else. Being an SCT survivor helped me to be a better helper to John with his ALS. He really is a blessing to all of us and I am not sure I would have understood that had I not had my tumor.

I don't want this to sound holier-than-thou, because, God knows, I get feed up and it is easy to forget all of this. And we are entitled to our anger, frustrations and sadness. And it feels good to vent. Hopefully we get through those times and when we are in a peaceful place we can also appreciate some of the ways that our tumors have made us stretch and grow.

P.S. I will be disappointed if Went doesn't make some sarcastic comments about my post!

[went]

msweeney said:

P.S. I will be disappointed if Went doesn't make some sarcastic comments about my post!

Well, I wouldn't have, but I don't want to disappoint.

I've always held the door open for pregnant gals as well, because it's obvious that they put out.

"Cordialness leads to conversation which leads to coitus." That's my motto.

[Cheryl55]

Two nights in a row I have the computer! whoo hoo!

Hi Chris!
To answer your question, she said she just thought since I was able to walk, even a little, that I would want to be out of the chair as much as possible. I told her of course I do but I know my limits and what's the point of falling and possibly getting hurt so I can't do anything at all? What's the point of walking around the house with my crutches if I stick to the floors because with the crutches I'm unable to clean them? I told her that I give up trying to explain it to her because I could tell by her face expression she just didn't get it. Then I told her she was just jealous because I had a cool set of wheels and she didn't!

With my life as it is I do what I have to do anyway I have to do it to keep family and home working. I have a husband in poor health and 2 teenage girls to raise so my being down and out is not an option! And I'm sure that's how it is for most of us SCT survivors, we just do what we have to do! And the ones who do it with a smile on their faces are the ones who's taking the drugs! HAHAHAHAHAHAHA ;D


Cheryl [still no yellow ducky ]