Vent your frustrations here!!

[Joel]

Bill, you know one great thing I've noticed is that kids are just so accepting. My son has it all figured out and knows even when I need some help with something or a shoulder to hold on to. We have had to shift to doing Wii games now instead of the real things. While I'd rather do the real thing, this is the next best, I suppose.
Joel

[billanschell]

Funny you should mention Wii - I've just bribed my kid with one (he has to master some exercises on piano first) because I figure that will be our best chance for father/son interacting.

[Tmasgio]

billanschell said:

Joel: I am right there with you. We must have comparable symptoms, because the biggest heartbreak for me is not being able to be active with my son. I'm only good for about ten minutes before my knees get so tired and stiff I have to sit down. I would love to be able to kick a soccer ball with him, but it's just not going to happen. And he's such a physical guy it's hard to find things we can do together that don't bore him. So, I'm doing my best to be a good dad, but I'm up against a serious barrier.

--Bill

Bill I dont think your up against a barrier just more of a challenge. I am no psychologist by any means but I think Children adapt more so than Adults. I think they just need our acceptance and for us to be proud of them. My Father never taught me any sports but he was always at the games to cheer me on. That was more important than anything.

On another Note WII...... Just learn to kick there butts on that for some real male to male bonding.

[8338]

I love the Wii. When this tumor woke up I had to quit my bowling league and my husband didn't want to bowl anymore either. We can now bowl!
Barb

[onmom3]

Ok, I am going to go way out on a limb here, because I am not the one with the tumor in this case. My son had a sacral myxopapillary ependymoma and he is a year post op. I am just his mom and was one of his caregivers while he went through this very challenging ordeal. He is doing very well and our family couldn't be happier for him. But through it all, it was always a balancing act to keep him feeling safe, comfortable, cared for, independent and respected. I admit I had many moments that I had to walk away before I exploded. People in pain can be very angry and cruel, lashing out at those who are there, but not necessarily responsible for the problem. I was willing to take a lot of crap because I knew he was coping with pain, fear, frustration, and boredom. I probably didn't always say the right things (we mothers rarely ever do, anyway) but my heart was always in the right place. I didn't want to take away his ability to make decisions for himself, but sometimes you know when someone's thinking is influenced by their circumstances and perhaps is not clear about what the best course of action should be. So, if I may say, my vent is that when your loved ones (who, by the way, are very much affected by the illness and its outcome) do all the wrong things and say things that appear stupid and insensitive, please understand that sometimes we forget and don't live every moment of every day in your situation. That doesn't mean that we don't love you and want all good things for you and wish that we had the power to make everything better. It is so hard to watch all of this happen, but not be able to show what its doing to us on the inside because that would be selfish and put an unnecessary burden on you. And some days it gets to us too. I, for one, will never be the same. I hope i haven't offended anyone, though I am sure I have annoyed a few of you. It's ok. It's all about learning how to get through all of this, isn't it?

[chickiet]

onmom3 -

Thanks for your honest comments about "life on the other side," so to speak. It is a very tough balance on both sides - and sometimes I think that the caregivers have it harder. At best they have a totally different perspective than we do. The caregiver undoubtedly doesn't understand how we feel and therefore can't totally understand our decisions, frustrations, hurtful comments, etc. But the love and care remains there - and we count on that.

I think the bottom line is that there has to be a balance acheived between both sides. Some days that's pretty easy; other days it is almost impossible.

Thanks again for your post - we all need to hear the frustrations of others.

Chris

[bencnRN]

Thank you so very, very much to any and all of you who can see this from the caregivers side. I am posting under my husband's name here. I read this forum every day and inform him as to what is posted. I didn't read him any of these messages on this thread because I was so hurt. So, I am glad that that mom had the insight to step up and explain what it is like to be a caregiver. I truly hope that none of you really feel the way some of these posts were stated. And, I hope that each of you will forgive us for our horrible flaws. We mean nothing hurtful to you the patient. We just have to deal with a lot, too! Our world has to go on and we as the caregiver have to assume the responsibilities of the patient, too. I am now the one who works a full time job, pays all the bills, takes care of everything in the house, makes all decisions and still has to smile like I am having a wonderful time because to the average Joe, I have no reason to be sad. After all I am not the one who has the tumor. People will ask all the time, "How do you to this?" My answer is always, "I love him so I do what I have to do!" I am one person who did not walk away from my responsibilities to care for my husband. But, I hope each of you can understand how much it hurts to not have anyone to care for us. After 8 years and 3 months of being all this and more, I am sad when I think that anyone would think that any person who has stepped up and earned the honor of caregiver would be intentionally mean. I, too, certainly DO NOT want to offend anyone. I just had to tell you how it feels from the person who really doesn't have to love but chooses to love.

[ScrapHeap]

I often say how difficult it is for those closest to us to deal with things on a day to day basis. I believe I even mentioned it in a fairly recent post. Having to balance between assisting/providing for us while also dealing with the "normal" life outside/away from us. It is frustrating, to say the least, for all involved.

That said, I do not believe any of the SCI members here meant to be hurtful. It is a thread directed at providing a venue to voice frustrations. Which naturally includes/involves loved ones as well as others. Sometimes we hurt the ones closest to us the most. It's not usually because of intent. It's usually because they're there, so to speak. I love my wife more than life itself. But to be completely honest, sometimes she just doesn't get it. I'm sure sometimes I don't get it either (where she's coming from). Sometimes we're so frustrated we'd like to wring the other's neck. And we, like you, are certainly entitled to feel that way. It's part of being human. Better to acknowledge it, address it, and move on than to ignore it like it doesn't exist. Worse, not voice it and work through/past it.

Hey! This IS a "Voice Your Frustrations Here" thread. No one said it was strictly for SCI's. You have just as much right to voice your frustrations as we do. You and every other support system involved. Iincluding our doctors and nurses.

Most importantly, because you do what you do, you have my utmost respect. In case you haven't heard it for a while or often enough, Thank You for what you have done, are doing and will do. It's selfless and under rated, to say the least.

[Think Positive]

My latest frustration is............... I have a new boyfriend so the "going out on a date" thing is all new to me since my SCT. He goes to a lot of social outings/events due to his business. I love going out with him but my big thing is not wanting to get up to walk to the bathroom with all eyes on me (no matter how bad I have to go) and/or walking out in front of everyone when it is time to leave. We were at a bar the other night and we had been sitting so long that when we stood up to leave, it appeared that I was drunk off my butt instead of well, you know, "the way I am". Even after five years, I am very self-conscious about the way that I walk. Will that ever go away?

Kim

[drummer904]

Thats hard to say, Kim, I sure understand what you mean though. Im sure most of us who's walking is impaired or are in a wheelchair are pretty self conscious about people looking at us. Im still trying to get used to it, it's only been a year and a half for me. It'll just take some time and just not worrying about it. Live life!!

About the whole"going out on a date thing", It's all TOTALLY different now...I havent been on a date in a while obviously, so I would like to hear from anyone who's gotten back into dating in a wheelchair, since the idea seems a little intimidating at the present time. I guess what Im saying is, I'm 30, would love some female companionship, kinda want to wait and see how much return i get in my legs, but dont want to waste time either. Can anyone relate??