Trudy Triumph's Neurogenic Bladder Blog

Keeping Family Time Positive is not Always Possible, My Neurogenic Bladder and Bowel

The needs of my body and soul are pretty basic:

  1. Healthy food
  2. A clean restroom
  3. Plenty of sleep
  4. Family harmony

Do I ask for too much?

I keep up very well with my family, most of the time. They do not offer me sympathy because I do not have a working bladder or bowel.  They do not notice and do not care because there is more to our life together than my physical limitations. I lead a full life and enjoy most of it, but not always.

Just because I do not talk so much to my family about my restrictions in life, it does not mean that I do not have them. My fleshly constraints sometimes impact those I love the most and they do not even remember the reason why.

At night my muscles ache and I have severe pelvic pain.  If I complained to my domestic dears every time it happens I am sure they would avoid me like the plague.  I try to foster wonderful experiences with my family during the day.

At night I get bone tired. Stay out of my way, I need my sleep. I can become short-tempered and irritable. But, for the most-part, my family knows this and steer clear of me.

This last Christmas there was a bit of a spit-spat between a family member and myself. I had offered to take one of the toddlers in my room during vacation, and in the end I just could not. Now, I have been labeled as lacking integrity because I have gone against what I had initially said I would do. I reversed my decision.  I changed my mind.

I know that life is not fair and I was erroneous for going back on what I thought I could do. The family member does not experience chronic pain, so it is impossible for her to understand anyway.  Words cannot really work in conveying what it feels like, especially when I am bone tired from living with a chronic condition, so I will not even try. Words get so emotional for me at night anyway. I want to keep things positive, but it is not always possible.

Kinfolk will never understand that my walk in life is different than theirs. They will never understand because they do not feel what I feel.  The twinges of tightness in my pelvic area, the bloating of my bowel, the soreness of my muscles after slight activity.  All this foreign to them. I cannot blame them for not understanding my side of the situation.

When I am the cause of disappointment and bad feelings, all I want is for it to go away.  I KNOW I should not carry feelings of disappointment around for letting people down, or make a nest in my heart with hard words and evil thoughts.  But my expectations don’t always meet reality.  It is just hard, sometimes.

I want to move on and take on a fresh attitude. I now harbor no hard feelings and anger because I was not understood.  Like Elsa sings in Frozen, I need to“Let it go, Let it go” . . . .

No one said life was fair.  I am over that part.  I need to do my best to start each new day afresh.

My Prayer

God, please give me a new loving and kind heart.  Make me a person who is understanding. Take from me the need to explain what words cannot express anyway.  Please help me understand during the day what becomes crystal clear at night.  Help me keep the edge out of my tone when I feel frustrated.   People are the prize.  Keep my heart. I give you mine.

Circle of Friends

No doubt, you have experienced similar frustrations at times.  Please share examples how you might not have been understood, with us: how you push your broken body through real life situations.  We would be happy to include your story in our Circle of Friends.  Send us your picture and story . . . whatever you are comfortable sharing.  Together we can begin to heal.

 

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