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Can I feel sorry for myself a bit here?


Square Wheels

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There are no answers or solutions to my problems.  Sometimes I just need to have someone listen, and in this case it can't be someone I know, or they'd have me committed, again.

I've been suffering from increased bladder pain for almost 17 years now, at this point it is ruining my life.  I like running, but suspect that is now a thing of the past.  During my last century I tried to count how many times I had to stop, I lost count after 20 (still did the 109 in 6.5 moving hours though).  I avoid activities where I know there won't be a bathroom.  There are many things I won;t even consider doing.

Tuesday I had another poke around the bladder to see how it was going.  During the procedure he tried to inflate the bladder with some saline, didn't get to 250 mls before the skin started cracking open and bleeding.  He said he'd not seen that before. 

At this point I've lost track on what I've tried.  Many urologists, acupuncture, meditation, many different drugs, prostate surgery, Botox injections in the bladder, physical therapy (twice), chiropractor, diet changes...  Again, I forget what else I've tried.

When this first started almost 17 years ago it was frustrating that I would need to pee every few hours.  Now it can be every 5 minutes.  If I go on a run, it's a crap shoot if I'll be peeing blood when I get back.  Now it's happening with riding.  Sometimes I pee blood and clots even if I don't exercise.

I've been in the hospital since yesterday (unplanned) and should be going home tomorrow.  Two different docs have said I might be looking at removing the bladder at some point in the future.  I won't do that.  I'll give up before that.  Honestly, a lot of me already has given up.  I feel like I'm faking it each day (again) to make others happy.  I love my wife, I love my kids, I love my family, but it barely gets me through the day at this point.

I may not make it much longer, and sadly, this does not make me sad.  It sounds like relief to me.  Finally, relief.

Thanks for listening, no replies are needed.  Honest.

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Never worry about venting to us.  We can be a snarky lot frequently, but there are also a lot of good people here who really care about you.  I wish there was something I could suggest, and I hope there are some alternatives that can improve your situation.  I am so sorry you are dealing with this.  Just remember that we love you and would miss you very much.

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...how you feel is how you feel.  Nobody except an idiot is brave all the time.

When I had CFIDS for those 4-5 years. I spent the last three of them "resting" full time.  I spent a lot of that time planning how I was gonna check out, and honestly the only thing that saved me was that I couldn't drive, was too weak and mentally disorganized to put together the resources for a clean and effective suicide, and did not want my poor wife to find me some place and have to deal with all the mess. And then, gradually, very slowly, and for no discernible reason, I started getting a little better.  

If I knew why, I would shout it from the rooftops, because I still know a lot of people with the syndrome.  But I don't.  I suspect that it was not some unseen deity smiling down on me, giving me a break because of all my good works.  I'm not an especially good person, or an especially bad one.

 

I worry about the stress levels you are always describing at work.  I've mentioned it to you before.  It's your life, but I know that if I were in constant pain I'd want the time and energy tp muster my physical resources and regroup.  Also, I'm pretty sure your emotional state is being worsened by the inability to exercise.  It's pretty common for someone with a prior history of training and regular exercise to suffer some depression when that gets cut off. something to do with endorphin responses and production in the brain.

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So sorry wheels. I'm sure you have talked with the docs about everything. Does an ostomy bag help with the bladder? For me that was the scariest deal with my Crohn's. I really did not want a bag. Quality of life matters. 

I wish for you healing & peace

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