www.incontinentsupport.org

It really is hard to deal with my incontinence after my stroke. I'm still completely embarrassed by wearing diapers. Still (6 yrs with incontinence). I have to say it does become a little easier over time. My physical and mental issues struggle but my recovery continues. Most of my slow recovery is mental processing. Listening, responding and reading with aphasia. Physically, I still struggles with blurred vision, dizziness (vertigo, unsteady and loss of balance) and incontinence. I do feel frustrated and irritated. And yes, completely embarrassing.

I acknowledge that diapers keep me from being wet or soiled. For almost 6 years I have become a better understanding of how to keep me clean. That urgency is necessary to keep me completely diapered. I've been using Confidry 24/7 disposable diapers. I have regularly flooded my diapers so I also use boosters and plastic pants. I used to leak my bed anyway so I also use cloth diapers over my disposables and plastic pants while sleeping. It keeps my bed clean and dry. Things like these are embarrassing. While depressed I have become somewhat better over time.

Most of my BM's are in the early morning. Sometimes in the evening too. I only have a few BM's while sleeping. Maybe once or twice per week. Mostly solid. All of them are for severe urgency or sometimes sleeping when I don't feel it. Using my disposables keep my BM's contained. At night the cloth diaper keeps mostly unsoiled. I used to think I was getting better but it always comes back. Frustrating.

Even when I'm home and alone I always feel completely embarrassed. In public or at work is almost unbearable. I do wear loose clothing, use Nullo (internal deodorant) and plastic pants. I think I've done everything I can use but it's still embarrassing when I have a BM. Wetting is easier but it takes time for changes.

Over 6 years I've become somewhat better. Family seems I'm fine. I have an older sister who really seems concerned about my depression and helps with it. I guess life goes on.

I think you have absolutely nothing to be embarrassed about and from what I'm reading here have dealt with your incontinence in an excellent manner. I think you deserve praise for how well you've handled your situation.

Add my kudos for your admirable success in adjusting to your situation. Try to remember that we are not alone; there are millions and millions of us in the USA alone. And yes, loss of bowel control is humiliating and frustrating. I have been there. Nullo, Devrom and sturdy, leakproof protection pay for themselves when that happens. I hope your insights will aid others here who may be new to the challenges we face.

Padded53 and Patrick -

Thanks for responding. Obviously I've been dealing my issues by adjusting my mental attitude. In many ways I've used what I consider is just necessary. It does nothing for how I feel about it. You can't even understand how difficult it is for me to just write this post. While I mentally understand what I want to say is a different thing all together. It takes time to just find the right words. I confuse so many words that it takes just an hour to post this. This is just a part of all my crazy thinking.

My physical issues are beyond just incontinence. My vision has not recovered. I still have blur and double vision. I really fear I will lose my driving ability. Hearing what people are saying to me is very confusing. It's easier for people to actually write it down.

My incontinence is so difficult. I know most people have no idea that I'm actually wearing a diaper. But I know it. It's hard when I feel my diaper is wet. Or even messy. And just because of it, I feel intense embarrassment. I can't help it. Whenever I go to see the doctors I always think others must be knowing. A couple of times I've seen other people starring at my crotch. Makes me so humiliating. It's been almost 6 years now and I still hate it. Most of the time I isolate. I know it's not good. But sometimes I just like to be alone. My sister tells me I really should be getting some therapy. That doesn't help the fact that others know.

I try to keep moving on. I know I'm a smart. And despite my issues, I have to make myself happy somehow. I have to.

I feel you. All of those afflictions you described sound incredibly frustrating. I can relate to some of them.

As for the depression: the more I read about brain disease, and injury it seems to be a common theme. The brain is such a complicated place. It's not always apparent what is going on in there as we move through our thought process. Emotions, speaking, sensations are just bundles of signals and nerves. It's weird to think how all of those things are happening in the organice matter, and how it manifests the consciousness.

I think good advice is just to have empathy yourself. Give yourself a break like you'd do for someone else you knew was struggling with the things you are.

I really appreciate you taking the time to share. Thanks.

_________________
Thank you kindly,
CG

Wow, this is such a profound statement! I'm sure we could all apply this to ourselves at sometime in our lives. Thanks for posting this CityGardener.

Your right. Good advice. I should have some self-empathy. But it's hard to not focus on myself when I know I'm wearing a diaper, dry, wet or messy. I'm trying to be more of just a "what the f***" and just get changed. I know when I'm at home, it's getting a little bit easier. But when I'm out and having a wet or BM accident, I just can't help it when I focus on the fact that I had an accident. I'm trying hard to not do that. Out of focus. That's the key. I'm working on that.

Padded:
my riff on self-empathy was just processed, and recycled words from all you guys. I think I know how frustrated, and helpless you feel georgianchants131. I really really struggled for a bit when I started having to wear protection. OAB was not new, but I did not ever have to consider wearing a damn diaper. It was a really rapid onset into nearly full loss of control. It was a shock, and shift to my life. With depression, and fear for my health, and no clear answer at the time from the doctor, I felt completely deranged. I don't want to go into detail about how dark it really got, but I will say that I'm thankful to have interacted with folks on here. I think I'm copying advice to me from JDinvirginia who told me I should "take care, and be kind to yourself"

At some point I think I became "OK" with all of it. And yeah, I still struggle a great deal. Caring about my health and safety, like someone else would is how I resolved to "deal with it". My brain and body work incorrectly, so I need to look after myself.

The best thing though, I think, is when I stopped worrying, and hating all of it, my mind was free to concentrate on the other areas of my life. I didn't do any counseling, but I do try to practice mindfulness. I'm sure I could have, and still could benefit from having a professional help me sort my thoughts. I would say if how you feel emotionally day to day inhibits you from making progress you should take action to help yourself out. Stop letting bad feelings control what you do with your time.

I really hope you get to start having some better days.
Thanks,

_________________
Thank you kindly,
CG

Hi georgianchants131

Incontinence brings lots of physical and emotional challenges I feel your pain. Incontinence should not be embarrassing it actually shows who your true friends and family are. I developed Incontinence when I was a teenager and I was told this “Yes I Have Incontinence but Incontinence Does Not Have Me” this has guided me through those periods when I feel sad, angry or depressed.

You are not alone if you need support reach out at the earliest opportunity.

Keep safe

Greenbank

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!