Recent thoughts about this.

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I've been visiting here every day for a couple years, posted once in a while, feel like I've met a few friends and am finally feeling somewhat comfortable talking openly. So, here are my current musings regarding my issues. I usually don't say much but have been thinking a lot about my situation lately.

The past year, I have about one dry morning a month. Increasing problems during the day. I try, when I'm at home to not wear, so my bottom can get some air time though, which is very important.

I normally have a fair amount of time to think at night, but my mind was occupied last Sunday, while working at my homestead, where I live year round. I was cutting firewood for the coming Winter, which seems to have already arrived.
Basically, thinking about what to be thankful for (it is Thanksgiving month) and how I may have actually grown, emotionally, spiritually and mentally, due to having to deal with incontinence.
For me, I have grown because of it. I never would have thought I'd have had the internal strength to be able to deal with this. I realize others have incontinence to a greater degree than me. But, I have accepted this thinking, "If this is the worst God gives me to deal with, I accept the deal".

I know some have such a hard time accepting it, even though they really have no choice, due to an accident or such.

Mine could be caused by a number of things or a combination of them.

I was in a snowmobile accident 25 years ago, where I ran into a creek and came to a very sudden stop. So hard the frame of the snowmobile was bent between the gas tank and engine. My hips hit the handlebars so hard the bar post was bent. I walked away without apparent problems. Strong hips I guess, but not a strong bladder years later? Lol.

We pulled the machine out and I drove it back 10 miles to the next town. Went to the E-room and everything was apparently ok, but I still wonder about a lower spinal injury, but this started about 16 years afterward.

I also wet my pants and bed when I was a kid, so it could be that it's just coming back.

I experienced a really horrible divorce 20 years ago and the stress over the years has really taken its toll on me, which I think plays a major role in this.

And finally, 6 years ago, I had a serious neurological issue that they never could seem to diagnose. My left side, one area at a time, just quit working or was numb or in burning pain. Right side was without any issues.

Went on for 7 months. One month I was having trouble walking even with a cane in the house. It eventually went away on its own and "Thank God" has not come back....yet. I still wonder about relapsing/remitting MS.

I think basically, the insurance company said, we've had enough, no more.

I've always wondered how some people accept it and deal with it and some people "wither and die" and can't seem to come to terms with it. By accepting it and just agreeing to manage it by wearing diapers, I get to go to work and maintain a regular job and life.

I guess I look at 4 options.

1. Just don't do anything and go about in society with pants wet possibly down to my knees.
2. Stay home chained to a toilet.
3. Bullet in my head?
Really don't like any of the previous options.
4. Diaper up and go to work, live my life. I'll choose this option, very happily.

By choosing to wear diapers, I get to go to work, shopping, etc, live a pretty regular life and enjoy all that I did before this started 9 years ago. It's taken that long to get to this point of acceptance and I do.

I have a job that involves a lot more labor than most people could do, especially at near 60 years old. 5'9" tall and 155#. I work at a sawmill less than a mile from home, for a guy that I consider the best friend I've ever had. I catch and edge lumber, shovel sawdust and drive heavy equipment. I love it.

And Yes!, it is a choice, based on the circumstances you are given. Unless you choose to go the route of the questionable procedures or drug side effects, I guess. I don't.

I guess time, over the years, does equal acceptance. I think we all go through different stages of accepting/dealing with this. Some faster than others.

I'm at the point that I don't really go out of my way to do everything I can to hide my diaper lines beneath my pants. I certainly don't deliberately show that I'm wearing one! I wear appropriate clothing, loose carpenter's jeans, untucked longer shirts, etc. But I've gotten to the point that if someone were to notice, I really don't care.

I hope this helps someone move along their path to accepting this.

Apologies for it being long. I don't say much, but when I have something to say....I do.
 
You are my hero in a way. I try the same in not worrying and moving along with life. Thank you for sharing your story.
 
Few months ago my father nearly 87 had a problem he couldn't pee. I had rp 9 years ago and need pads and diapers. I flat out told him it better to wear diaper than not being able to pee. Before rp it was so hard to go.
 
Thanks for your story. It’s not easy but is very therapeutic to talk about our problems. Although I just recently have had incontinence due to RP surgery, I have felt sorry for myself and wondered why me? Few years ago my daughter moved out of the house and I began having insomnia that led to anxiety and depression issues. We are very close and not having her under my roof led to this. I really didn’t hide it from people in my life and I feel I was able to help others with similar issues. I still fight insomnia but have came to accept it. Think we all have thorns of the flesh we have to deal with in life. Sometimes they are out in the open, while others are hidden. Getting ready to return to work next week and I am nervous about this, but feel it is what I need to do. I work in a hospital so everyday I see people in much worse situations than myself. Just recently finding this blog has helped me deal with my incontinence due to the stories and interactions with others. No one wants to be alone.
 
If your friends knew of your incontinence, I'm sure they would be sympathetic. You seem to have a healthy attitude towards your work. Why shouldn't you continue with your present life? Incontinence is no crime. Everyone has some problem to deal with. Incontinence is no different from other medical conditions. You have nothing to be ashamed of. I wish you much success.
 
I second what everybody has said.

Thank you for sharing your story - it has not only helped bring a smile on my face tonight continuing to know I am not alone in my journey - but has helped and will help many others who drop by and read your sentiments too.

God bless you,
Honeeecombs
 
Thank you all for the kind replies and understanding. I really appreciate it. There are days when I get down about this, but I do everything I can to stay positive. I will admit, in the past I've been accused of having a pollyannish attitude about life, but I think that's better than being negative and dwelling on all of one's problems in life. I just want to have a productive life and not having accomplished anything.

Regarding sleep quality/expenditures, I'll definitely spend for quality products and get a really good night of sleep and be able to work all day, than spend my time and money doing laundry and being tired.

Yes, regarding hospital work, I can imagine the things you could see. That's why I say, "If this is what God throws my way", I say "No big deal". At least it's not cancer or some other life ending thing. Twice in the past 7 years, I've been checked for prostate and bladder cancer. Negative both times. PSA levels both normal. Had the finger up the butt thing, lasted about 2 seconds. Doc said it's enlarged, but nothing he wouldn't expect from a guy my age. The "wait and see" approach is pretty standard when PSA is normal.

And no, I don't want to be alone either, but I feel like this does put a damper on me finding a girlfriend. What I've never been able to figure out though, is incontinence happens far more often with women than men. So, I would think women would be understanding regarding it and maybe that might be evolving.

Yesterday, I read something about women talk way more often about this with their Doctor, but men are way more likely to talk about this online. I guess I would believe that.

In conclusion, I think much of my evolving acceptance is possibly due to society's acceptance and realization that this is more common than we previously knew. Also, we've had a lot of information regarding anti-bullying which I think has had an effect on the acceptance, education and empathy regarding us who live with this.

Again, Thank You ALL. It means a lot and I've meant everything I've said. A few tears reading your responses. Much love. I do appreciate it.
 
Please get out and meet and enjoy people, both male and female. If the need ever arises for you to share this intimate part of your life, be candid. You'll find that your TRUE friends will be those individuals who accept you as you are. I do know that women are much more accepting of men with this condition. Again, I wish you much happiness.
 
@spicewerx Thank you so much for letting us get to know you better. I love your attitude and I love that you’re a homesteader :) Hugs!
 
@spicewerx A superb post! Thanks for sharing and I think you've really captured the journey everyone goes on regarding health issues and disability. It's interesting you mentioned you had functional neurological issues on your left side, I'm the opposite in that ever since I developed Long Covid, I've had massive issues on my right side and whilst my good side is getting stronger with physio and able to compensate to an extent, any attempt to strengthen the right side just makes it worse. My worsening bladder issues coincided with the neurological symptoms.


Acceptance is definitely the key and I definitely went down the 'stages of grief' thing when I became more disabled. I think one issue for me is that with some conditions like Chronic Fatigue/Long Covid you seem to have a fair amount of people saying you should make a full recovery and others saying you have to learn with live it. It's hard to temper expectations. The compromise I've found is to just make future plans based on how I am now and to not set myself up to fail - if I'm much better by the time stuff rolls around, great, if not then I know I'm able to do it. One of my main issues before was doing stuff based on thinking "I'm sure I'll be better by then" and it just set me up for disappointment, failure whilst making my condition worse.

I've also been musing that often we think about recovery and progress in the wrong way. Ever since this all really kicked off my bar had been getting out of bulky nappies and back into pull ups and not needing a wheelchair. When talking with my osteopath yesterday, I realise I'd been thinking about it all wrong. By just focusing on those goals, I was ignoring a lot of progress I'd made - I have the odd morning when I can get to the toilet in time after I wake up, I have the odd night where I'll get up to pee, I'm having fewer big daytime accidents. Equally, I can play guitar again (no fingerpicking though!) even if I still can't handwrite. I'm also able to stay awake for the whole day more often. It wasn't that long ago I'd be in bed most of the day and had zero bladder control all the time. Recovery doesn't just mean full recovery.

I think re friends/dating etc. you'll just find out who your friends are. I had a really tough time at the end of school due to my sexuality. I went to uni and didn't have any issues and quickly found out what proper friends were! I imagine it's the same with incontinence. I'm also less self-conscious now. I think it still is seen as the most embarrassing condition out there but given how many disabilities and health conditions have incontinence as one of the complications, there must be a lot of younger people who suffer from it.
 
@snow Thank you. That means a lot to me.
Eventually I plan to build a cabin here. About 1,000 square feet or a little more.
It's a little less than 20 acres, about 6 open, otherwise woods.
I bought 10 Rhode Island Red chicks this spring. One turned out to be a rooster. Still not sure what I think about that. I get about 5 or 6 eggs a day.
 
@Sci_Fi_Fan thank you.

My problem about 6 years ago started with my left hand, between the ring and middle fingers. It alternate between numbness and feeling like someone was burning the flesh off of them with a torch. Then, my left hip started to hurt a lot, with no explanation. Then my left knee, my left foot went numb. I had a soft tissue thing going on in my left shoulder. All left side.

The month of January, I was walking with a cane and it would take me an hour to go outside and feed and water my dogs.

My Mom came up and stayed with me for about a month or so, to be sure I got to all my medical appointments.

They did a lot of blood tests, checking for RA, ALS, MS, Lymes disease. Lupus, diabetes, heavy metal contamination....

They did a complete MRI scan of my brain and a complete one of my brainstem. A couple days later, they had me come back for 4 more smaller scans of areas of my brainstem.

Then, after 7 months it started going away on its own. It was obviously a neurological problem. The neurologist told me there's nothing wrong with me. I know how I was feeling. Neurologists are some of the most egocentric people in the world. He couldn't figure it out so his answer was that I was imagining it and there was nothing wrong, because his ego couldn't allow him to say those 3 little words, "I don't know".

With me though, there are no stages of grief or at least not much. There's being told what's wrong and I go straight to "Ok, what do we do about it?"

I've said all along, if it is MS, I refuse to just let it have me. I'll keep working for as long as I can, in whatever capacity I can. It would just mean life is going to be a little different and slower.

To me, it seems like I have nearly every symptom. Numbness, burning, skin crawling sensations, bedwetting/bladder problems, eyesight is degrading to some extent, etc. But they come and go.

So I take everyday as they come. If it comes back, it does. They can't cure it and I'm not going to sit and mope about. Just keep doing as much as I can.

One good thing about 6 years ago though is that they have on file a complete baseline map of my brain and brainstem to compare any future scans to. I think that's worth a lot.
 
@spicewerx Sounds similarish to how it started for me (albeit on the other side). I'd agree about neurologists. The problem is that they just put it down to being all in your head if it's neurological - i.e. caused by trauma or something. Interestingly, it does seem to affect people with chronic fatigue and fibromyalgia so it's frustrating they just brush it off.

I'll echo what a doctor in A&E said to me at the beginning of the year - "the good news is that as it's been two years, if it was something serious you'd be dead by now." My philosophy's also to do as much as I can. I was feeling mopey about being stuck in limbo at the moment whilst I try and improve and realised that I haven't done nothing, I've been to a few conventions and had a great time. Whilst I wish I could do more, it's nice to be able to get out at least once in a while.
 
@spicewerx Soooo cool about the homesteading! I wish you the best!

I agree that neurologists are some of the biggest-ego doctors around. Mine is nasty to me no matter what I do. I don’t change because I know they’re all like that!
 
@snow Exactly.

Like I said, the best part of the whole experience is that there's a baseline MRI scan of my brain and brainstem to compare future images to.

I would have been very interested in seeing what would have shown up if they had done my lower back, the Sacral vertebrae, but there were issues in my upper body too. I just wonder if there's any damage in my lower spine that might be causing the bedwetting and bladder problems.

But I would think it would have manifested itself years ago.
It really was a wild, terrible accident though.

I am lucky to have come out of it with such minor injuries.
 
@spicewerx I would push for a lumbar MRI if I were you. Nerve damage can take years to fully manifest. It took my bladder nerves nine months to die. If you have lumbar damage, you should find out because there is PT that can help, and a lot to learn to protect the future of your spine. I would ask a urologist about it, though, not your jerk of a neurologist!
 
Hi! I recommend using QueSoft continence products. They're much thinner, cheaper and discreet, they don't even feel like you've got them on. You can order through their website at quesoft.com.au.
 
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