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Posted on: Tue, Apr 8 2008 8:15 AM

Posted by: shellGVchick Posts: 1,261

Some times we have to adapt and come up with short cuts and tricks to help get us around. Extention Poles. Rearranging things that you use a lot that are easier to access.  Do you have insurance, what about one of those little motorized wheelchair scooter thingies. I see from TV those are pretty easy to maneuver, and smaller. Just a thought.  There is no doubt you've been through a lot, but it's certainly not a contest on whose had it worse etc. Have you talked to your husband about maybe making his schedule so he can be with you more during the days? No one needs to prove anything.  Just do your best. I do think your wanting to blame some one though. You can't force your mother-in-law to come into your home and cook for you etc. She has her own free will and choices. Don't keep a score sheet of how much one person has helped over another. Just be greatful she has helped you.

You should see a blind man trying to cook and clean then you sort of count your blessings,  I go in about once a week and just straighten things up for him and clean, help him write out his bills. Being blind he has a system and a layout, when you clean and do stuff you put it back exactly how it was. He reads books by listening to them on his little tape machine. His version of entertainment is listening to the scanner all night listening to the good guys bust the bad guys. He's 67 years old, blind, in little tiny studio apartment, working at a little store in town tearing down boxes and things that are safe to do.  There will always be some one who is worse off then us. If you had asked me before I lost my hearing if I had a choice of losing my hearing or being blind I would of said deaf hands down. Well I am, our eyes are our canvas of the world. He is always trying to slip me money for helping him. But I could never take his money. Especially when he's like a dad to me.

Maybe write her a little note saying how much you appreciate her help and support back then and you hope you can stay in touch with eachother.  Don't blame her, don't be jealous, just acknowledge her.  I guess I'm rambling.

Best of Luck

Posted on: Tue, Apr 8 2008 12:49 PM

Posted by: Daisies1 Posts: 0

Hello Ben,

welcome to Disaboom.

Maybe You want to open Your own thread in the Welcome-Forum to let everybody know You are here and say Hi.

Daisies

Posted on: Tue, Apr 8 2008 1:01 PM

Posted by: Posts: 3,473

I have peripheral neuropathy in both feet and it is excruciatingly painful often.  My daughter and her boyfriend won't do anything for me so I stand on feet that feel like someone has attached wires to them and then to a car battery.  It's what we do because we must.  I could be angry and resentful at my kids but that isn't my choice.  I will do what I have to do to be independant because it is worth the pain.  Life is better than the alternative, even with a painful disability.

Posted on: Tue, Apr 8 2008 1:04 PM

Posted by: Posts: 3,473

 By the way I was raised by an amputee who mixed the cement for our house in a wheelbarrow, poured it into the foundations and built a house for our family with no help.  He also built a full machine shop and worked full time for over 35 years supporting us.

I have fallen numerous times myself, once down the stairs but my choice is still not to let anger, resentment and bitterness dominate my life. 

Posted on: Tue, Apr 8 2008 1:09 PM

Posted by: Lieslmcq Posts: 2,303

Becky: I actually understand where you're coming from. I don't think it's about not adapting to your new limitations as much as it is about having the support of family that you expected to have. I would go so far as to say that the support is far more emotional than physical. In other words, if your MIL had cooked for you it would have signaled her support of you and your family in a time of need, not just fulfilled a utilitarian need. I get that.

I was in a similar situation when I got sick. I was in the hospital at least once a month for the first two years. I had very few visitors after the initial one or two times and few phone calls. Obviously, the few that I had stopped after the bazillionth hospitalization. The thing is, though, I also get where my friends were coming from. Number one, they didn't know I was there unless they called my mom or husband, and number two, it gets old. I think people just don't know how to handle chronic and severe disease. Honestly, it isn't easy and it's hard to assign blame for that. Also, people don't truly understand the limiting nature of disease and disability so it isn't natural for them to think about the things we might need help with. Not to mention the fact that many people don't want to impose their idea of help when they know we are people who want to be self sufficient. It's just a very complicated issue.

All that aside, I understand why you're hurt. I think part of the problem is expecting other people to do the things we think we would do if the situations were reversed. Those expectations will kill you! I think you should talk to your MIL and explain your feelings. She may have no idea that she has hurt you and will probably try harder to help out where she can. If you do that, though, I'd make very sure to not place blame on her, just put the emphasis on your own feelings.

Good luck!

Posted on: Tue, Apr 8 2008 1:15 PM

Posted by: IamwhatIam Posts: 70

"Fourth, this situation was not about her. Did I say something to hurt her? I was in the hospital for three weeks after this surgery. I ended up with ileus, nearly a bowel obstruction, and I was quite miserable. When I finally got home, I had a grossly disformed and rotting leg to deal with, and I was in terrible pain. And then I had chemotherapy to deal with, besides the leg. You have no idea what all is involved with that. Trying to get out of my house was an ordeal. It was the middle of winter and we were in a cold snap, barely getting about 0 degrees for a high. I had to see a doctor every few days or so. By the time I got home, I was exhausted. They came to visit me several times in the hospital and for the first few weeks after I was home. I was very pleasant, even when I didn't want to be. Besides, I wasn't mad at them then. It was two months or so later, when they deserted us, that's when I got mad"

No, it is obviously about you.  You are the star of this saga.  Undoubtably you have been through a lot, but you are not the only one who has had problems. 

I would love to hear your mother-in-law's side of the story.  It even sounds like your husband sees her side. 

How dare you say others dont know what you have gone through!  You also have your husband and sons to support you.  Some have no one, and have gone through much worse and not bitched as much as you have. 

I know this is a support group for disabled people, but I honestly have never seen anyone as self-centered as you.  Do you know how much it would mean to some to just be able to get to the kitchen, let alone be able to cook a meal? 

As far as "knowing" what things are like, I am a C-2, quad , on a vent, fed by peg tube, am non-verbal with supra pubic cath and a colostomy.  I am also a testicular cancer survivor.  I DO know how things are.  I also know that loving people do not abandon loved ones without a reason, and you should look to yourself for the reason for that.

I apologize to others for my rant, and I do not mean to imply that I am worse off than anyone else.  I have a great life, a wonderful wife, a good job and I do not feel sorry for myself.  I just can't stand to see someone tell another disabled person, that they just don't "know".  We are all in this together, and I appreciate the love and support I have received from people I have met here.

BTW, BenPPS is my dad and he signed on as a member yesterday.  Like your dad, Beaker , he was disabled  He had Polio as a child and always used braces and crutches to get around until the last few years.  He worked for the State Department for most of his adult life, and traveled all over the world. He raised 4 of us kids, and each of us had a great upbringing and education.  I NEVER heard him complain once about how bad his life was, but I remember the sores the braces rubbed on his legs, and the surgeries on his joints.  He is my personal hero.

Posted on: Tue, Apr 8 2008 9:09 PM

Posted by: Lieslmcq Posts: 2,303

IamwhatIam:

How dare you say others dont know what you have gone through!  You also have your husband and sons to support you.  Some have no one, and have gone through much worse and not bitched as much as you have. 

I know this is a support group for disabled people, but I honestly have never seen anyone as self-centered as you.  Do you know how much it would mean to some to just be able to get to the kitchen, let alone be able to cook a meal? 

That's not really fair. It doesn't matter that other people have had it worse when we're going through something; what's happening to us is happening to us. If we compared everything to how others have felt or what they've been through we'd regress into an infinite loop of comparison. 

IamwhatIam:

I also know that loving people do not abandon loved ones without a reason, and you should look to yourself for the reason for that.

Wow, that was harsh.

It seems like people have to have it really, really bad to get any sympathy these days. Oh, you think that's bad? well let me tell you what I went through! It's unfortunate that we're expecting people to have the same emotional reactions to disease and disability that we have had and it's unfair. Aren't we supposed to allow people their human weakness in the face of pain and disability? There's always going to be someone who has it worse than us. Where does it end?