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Support for dealing with incontinence
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PostPosted: Mon Sep 20, 2021 5:27 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
Ellyn,
Kudos for your brilliant and hard-earned wisdom. I needed to read that today, and I intend to read it as often as I need to in the future. Contributions such as yours make this site an invaluable support for me, and, I'm sure, for many others. Thank you.


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PostPosted: Mon Sep 20, 2021 5:57 pm 
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Joined: Sun Feb 07, 2021 2:40 pm
Posts: 64
Location: Newmarket Ontario
I have received such comfort, reassurance, encouragement, and support from so many of you. Knowing that you have been there for me and each other and more important that you affirm not a single one of us is alone; we share common life changing issues. The advice given is so often practical ,useful tried and true methods of coping or adapting to our personal often changing experiences.
Whenever I get feeling down and I come on site like today I am lifted and appreciate again the true value of the ISC; quite simply it is members like you who care to listen read and if so motivated respond to or reply with a word of encouragement or a good suggestion. I think the current thread is just another example of that great care and empathy we have for each other and of how well this group is fulfilling it's mission and mandate. We have all been through it, so thank you everyone for contributing and your heart felt willingness to help another in distress. You have truly helped me overcome and to keep on going. Thank you Ellyn for your post (right on), like Patrick I will read that again and again as often as I need ; thank you again. So georgianchants131 you are in good company and I hope you find the reassurance and support you need here like I have and like so many others have also.

Paul Henry


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PostPosted: Tue Sep 21, 2021 10:43 pm 
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Joined: Wed Sep 15, 2021 9:40 am
Posts: 11
Location: chicago area
Ellyn wrote:
I too have been incontinent for as long as I can remember to varying degrees, mostly progressive. As a kid and teen, nearly everyone knew of my incontinence. I’ve heard it all. I’ve felt it all. I get it. After graduating high school, I went away to college and had the opportunity to start over with new friends and peers. Only a handful of people know about my personal issues here and now. When I return to my mom’s house, I don’t associate with many there except my “true friends”, which are few but still very close. These are the friends that didn’t tease or ridicule me. The ones that stuck by me when I needed a friend.
I used to feel a LOT of shame as a child, up until I was diagnosed with the birth defects. I was put through hell by my friends and much worse yet, my family! Try as I might, I couldn’t stop the leakage and only went a few nights without wetting myself. I was put in diapers as a punishment, not to help me manage my leakage issues. I was spanked often and otherwise punished for something I could not manage. I never ran away because I had nowhere to escape to! CPS wasn’t around (I guess) or active in our small rural central Texas town. I considered hurting myself often but didn’t have the courage. Thank God I was diagnosed when I was! Who knows what would have happened!!
Today, I live a pretty normal life. I’m a wife, a mom, a partner in our business, an active part of our boys school, activities, etc. I do have anxiety and depression from time to time.but I work through it, usually without meds. Shame is one emotion that I have not felt since childhood. I am who I am. And I’m proud of who I am.
I was diagnosed with MS years ago but am managing it well. I have pretty much lost urinary control but maintain very good bowel control, which I’m fortunate. I manage my loss of control well and as a nearly mindless routine as I’ve done it most of my life. Except for a few, no one is the wiser about my “protection” that I wear always.
Never allow yourself to feel shame for something out of your control! Do your best and be proud of who you are. You may feel conspicuous wearing a diaper or other “protection” but regardless, 99.99% of others don’t know or care. But it’s goes well beyond that…. **You** have to accept the person you are and be confident, as everyone else also needs to be. You are the only one that can make You happy and confident. You are the only one that is critically important in accepting You. You have to be proud of You before anyone else can accept the wonderful and magnificent creation that God intended in You!


Thanking you Ellyn. :What a beautiful sentiment. I'm feeling so much better for what you have said. I do have a lot of shame and embarrassment. i think most would expect this. But there are many, like you, who have a high amount of confident and that "critically important in accepting" strength that I don't quite have the power I need. I will say that I'm getting better.

In the beginning I had a lot of bitter thinking. I didn't have a "perfect" life but I did have a great job, good friends and a nice house. And of course, strong family. I keep telling myself that I still have all of them. Perhaps not as many friends now, probably because I've some what isolated myself. I work in my family business and they have adjusted my work. I can work mostly alone. It keeps me busy and in a degree, happy.

I know it's for the acceptance that I need to work on. And I will. Thank you.
georgianchants131


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PostPosted: Wed Sep 22, 2021 3:54 pm 
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Joined: Mon Jun 18, 2018 4:52 pm
Posts: 265
Location: Central Texas, USA
I sincerely hope that everyone here is experiencing temporary incontinence only but the reality is that for some, it’s here to stay. For those that are dealing with long term issues, really there’s two “basic” ways to deal with it…. Fight It or accept it, but either way, remain aware of your health changes and remain in close contact with doctors / specialists. New treatments are developed all the time!!
If you choose to fight, anxiety and depression are sure to result. Both are difficult to live with, trust me….
The five stages of grief are:
denial.
anger.
bargaining.
depression.
acceptance.
It seems that the people I have heard from experience (or are experiencing) all or most of these stages,
I have been incontinent for most of my life. I accepted it long ago but that doesn’t mean that it’s smooth sailing from there…. Oh no. I still get irritated and depressed from time to time, but usually when I’m experiencing issues from something unrelated. It just puts me in a foul mood, then spirals from there. We all have our way of dealing with stress. Mine is get plenty of rest and change my routine or maybe even travel to our ranch for a few days.
Being incontinent is no picnic but it’s only as “bad” as you allow it to be. People are here to help and gently guide if so desired.
Change is a natural part of life. My dad’s old saying… “Things change, People change”. We all need to accept change and change with it. “Nothing stays the same”.


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PostPosted: Wed Sep 22, 2021 5:03 pm 
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Joined: Mon Jan 25, 2021 2:13 pm
Posts: 455
Location: Southern Ontario, Canada
I hope people don't mind me joining this discussion because I feel I have it pretty good compared to what some are dealing with. I've never looked at the 5 stages before:

  • In my own urinary IC, the denial stage lasted about a month or so. "That diagnosis can't be right". "This can't happen to me." "Really?"
  • I skipped anger, since I was already made aware that this could happen early in my diabetes 20+ years ago. I just didn't believe it would apply to me.
  • My bargaining was limited. Could I really have controlled my glucose levels well enough to avoid this?
  • Depression is something I wrestle with, though not severely. I feel like I've been devalued or damaged.
  • Acceptance is mostly where I am now, though I go back and forth with depression.

Most days when I am working, I don't have time to reflect on it. But at other times when I pull-on or tape up a diaper, I look at myself and wonder what has happened to me. Is this really me? What have I turned into? What does my wife and family think of me now?

So while my issues may be much easier than some, acceptance is still difficult. Once this pandemic is over and we start re-socializing with our larger families, I have to face how things have changed for me since I last saw them. How much will I discuss my health? How will I work around my IC when visiting? Will I burden myself with keeping it a secret?

I'm generally an up-beat person. But I still oscillate between minor depression and acceptance. The practical side of me is that "bottom line" thing that I can't fix, so just accept it. But that is easier said than done.


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PostPosted: Wed Sep 22, 2021 6:02 pm 
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Joined: Wed Mar 22, 2017 8:01 pm
Posts: 554
Location: Florida
Ellyn:
Here's a saying very similar in meaning to your Dad's. It was coined in 1849 by French writer Jean-Baptiste Alphonse Karr (it's my favorite saying),
"The more things change, the more they stay the same".


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PostPosted: Sun Oct 03, 2021 12:21 pm 
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Joined: Thu Feb 07, 2013 11:51 pm
Posts: 54
Location: San Diego, CA
I've struggled with bladder control issues due to OAB/urge incontinence and to a lesser extent, stress incontinence for most of my life due to Tarlov Cysts on my S3 sacral nerve. Embarrassment and fear were a part of my childhood as adequate protection for children wasn't as reliable as it is today. Although I was a frequent wetter, I was able to conceal my accidents at school and nobody knew of my incontinence. At home was another matter, but I don't recall ever being humiliated or punished for wetting my pants. Other members of my extended family also had bladder control issues, likely as a result of the same condition that I had, so having accidents regularly wan't as humiliating as it might have been. Still, it was embarrassing for me and I often hesitated to speak up until it would be obvious to everyone that I had wet my pants.

It wasn't till I began dating the woman who eventually became my wife that I began to be less embarrassed and more comfortable with my incontinence. Aside from the fact that she is incredibly kind and supportive, her mother and at least three of my wife's sisters had serious enough bladder control issues that three of them had to wear pull-ups, so she took it in stride when I told her of my bladder issues. It was her support that helped sustain me through treatment for my OAB and detrusor-sphincter dyssynergia and transitioning to diapers 24/7 in 2006. I'm still very private about managing my incontinence, but I no longer feel shame when my wife sees me in my diapers, and am less self conscious when out in public or speaking of my condition with family and friends.


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PostPosted: Sun Nov 07, 2021 10:57 am 
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Joined: Mon Jun 30, 2008 12:33 pm
Posts: 1512
Location: MI
For me, I had incontinence reoccur after 4 years of being dry and in normal underwear. I had a really hard time readjusting at first. I got angry. But
in 2014 or so I said to heck with it this is my life in diapers, and life got easier from that frame of mind. It can be difficult to accept, but the peace of mind and lack of agnst are worth it. Peace out!

Rob

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II


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