Sometimes living with Multiple Sclerosis can be embarrassing

Few things are as embarrassing to me as the times I’ve been out and about then had to rush home because of a bathroom accident. I’m not talking about a little wetness which can be easily remedied by carrying around a change of clothes. I’ve done that more times than I care to admit. I’m talking about a full on stink fest. Something that requires lots of wipes, nose plugs and a shower.

Yesterday was that day for me.

I’m normally pretty good at judging when I need to go to the bathroom but some days my judgment is all wrong. The muscles that control my bladder and bowels no longer work properly, that’s why a few years ago I had a urinary catheter surgically inserted into my belly to avoid such moments. It has definitely been a life saver for me.

Now don’t get me wrong, it is a lot of work maintaining a urine bag. Once a month a nurse has to change out the catheter and I still have to be extra cautious of urinary infections, but at least I no longer have puddles on my floor because I couldn’t get to the bathroom in time. The only puddles I have now are the few times I’ve positioned the tube in such a way that it kinked thus stopping the flow to the bag or when I forgot to empty the bag and it could no longer hold anything more.

I change out the urine bag each night for a larger one that I hang on the side of my bed and then use a smaller leg bag throughout the day. I rinse the bags with water every day and put some vinegar in them when they are not in use to keep them from smelling. I have a kind of love-hate relationship with my catheter.

Thankfully, I don’t make a mess often (maybe once or twice a year), but it is still super embarrassing when it happens.

I hate not being in control. Maybe that’s why I have such a hard time with multiple sclerosis. Control of just about everything has been taken from me. But you know, one thing I do have control over is my reaction to everything that happens.

I get to choose if I cry, get angry, laugh it off or give up. I am the choice maker of my reactions to everything that happens. Yesterday I chose to have a mini pity party, cry a little, then laugh. Everything worked out in the end. Maybe not the way I wanted them to, but all is well in my corner of the woods.

No matter what is going on in your life, no matter how bad or good, no matter the circumstance, remember that you get to choose your reaction to what’s happening. Multiple sclerosis may have taken a lot of things from you, but you are still in charge of you. That’s something I have to constantly remind myself of every single day.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

52 replies
  1. Vicki Cunningham
    Vicki Cunningham says:

    Botox injectiond in your bladder will give you back your life! My urologist does it in her office for me every 6 months. I self cath though so you may need to learn how to do that. Its easy!

    Reply
  2. Sharyn Rogers says:

    thank GOD I was n my way into the apartment building when this hit-late night, no one around to witness and again, thank God, my jeans and “protection” kept everything off the floor. Yes, it was all clothes in a trashbag, shower, then down to laundry first thing in the AM…does anyone else have a problem with lactose?

    Reply
  3. Connie Ray
    Connie Ray says:

    Penelope, you are the Wonder Woman of the MS world!! Thank you for addressing this often embarrassing yet important problem. There is nothing more degrading than being out and have this happen to you. Thank you again for talking about this!

    Reply
  4. Christine McCarthy says:

    Thank you for being so brave to share this issue….whether someone has this problem now or not you honestly could help them in the future. There are several other dx that deal with this…..god bless you

    Reply
  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope it’s nice to read you have a reasonable control of your in-built cathey as I am getting one in January and today I had an appointment with a Continence Advisor that gave me the information about that system. It seems to be the right way to go as the MS has taken over the uhtea tube muscle group and caused a retention in my bladder which is not good. The cathea that have been fitted to me are ok but not permeate and I have had UTI and blockage in them so I understand the route we are going on. I’ll keep you pasted on this trip.
    My bowel has got a lot better and cleaned up although I have a recent blow up and got it cleaned up well.

    Reply
  6. Fran Logan
    Fran Logan says:

    Thank you Penelope! So good to know I am not on my own with this problem. It has happened to me more times than I care to remember.
    Have a wonderful Christmas.

    Reply
  7. Jessica Allen Hilliker says:

    Totally understand. Good days are when I have Tolterodine in my system and can be normal. Bad days are when I can’t have any, use Toviaz, or drink anything other than water. I drank iced tea yesterday, and have to wait for meds… Also, I’ll relieve myself, and a short time later it smells like ammonia. Good times, good times…

    Reply
  8. Lorraine Lopez says:

    Oh yes…i can relate. I did it in San Francisco. The walk back to the hotel… Ugh. I got back took a shower, a nap. Then woke up off again. With a back pack of changes too. Always. Good vibes sent your way. Penelope I truly enjoy your truthfulness.

    Reply
  9. Leah
    Leah says:

    I never really thought about it that way…you’re right, MS hasn’t any control over our reactions. Thanks for brightening up my day. Happy Holidays Penelope!

    Reply

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