MS should stand for messy screwups rather than multiple sclerosis

Sometimes I laugh at myself, like yesterday when I accidentally dropped a cup of flour all over myself and the kitchen floor. Laughing about it was much better than crying. Besides, tears mixed with flour would have created a sticky mess.

I have accidents all the time. I trip, fall, misplace things, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with Multiple Sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Of all the messes that have happened in my life, some of my most embarrassing moments have been bathroom related. It’s not always easy to talk about the challenges I face on a daily basis when it comes to toilets, toilet paper, and bathroom accessibility. It’s not like I can just start a conversation, “You wouldn’t believe the mess I made in less than 10 seconds flat yesterday.”

The muscles that control my bladder and bowels simply don’t work any longer. No matter how hard I try, my brain will not communicate with that area of my body. Believe me, I’ve tried. A few years ago I had a suprapubic catheter (SPC) surgically inserted to help with my bladder issues. It’s a tube coming out of my belly attached to a urine bag. So basically, my bladder is now an external bag that I have to periodically empty in the bathroom throughout the day.

That is one of the best things I have ever done in my MS journey. No more accidents in the middle of the store when I’m out and about and no more sleepless nights because of multiple bathroom trips. Well, at least no more puddles on the floor.

I tried self catheters and I know many people who are successful using them, but my hand weakness and tremors made that an impossibility. There are also some mechanical devices available that can help people control their bladder with meters, wires and button, but for me they wouldn’t have worked.

I used to tell people that my bladder and the front door had a conspiracy against me on a daily basis. Every times I would make it home after I had been out, as soon as I got to the front door to unlock it, my bladder would no longer hold things in. I can’t even count how many times I had to take a shower and wash a load of laundry after I got home.

Now, my bathroom accidents mainly happen due to my bowels and me not getting to the toilet in time. The problem for me is that since those muscles are not working, I can’t flex or constrict them to help hold anything in. I get at most 30 seconds to make it to the bathroom, pull my pants down and sit on the toilet, and many times I don’t quite make it.

One thing is for sure, my abs always get a workout when I finally make it on the toilet since those are the only muscles I can still control. I should have washboard abs by now. Is that TMI? It may be for some people, but I think open and honest conversation is always best. It helps both those with MS and those caring for someone with MS.

When I am out of the house, bathroom locations are the first thing I think about. I want to know where the closest ones are and if they are wheelchair accessible. And just in case I don’t quite make it, I also keep a change of clothes with me for those unexpected moments.

Hey, s*** happens and most of the time I have no control over it.

MS Gets on My NervesMS WarriorMS Superhero

 

7 replies
  1. Tiffany
    Tiffany says:

    Thank You Penelope for sharing 🙂 this is not a subject too many people want to talk about but it is TRUE and I’am glad you spoke about it to us 🙂 Thanks 🙂

    Reply
  2. Roland R Clarke
    Roland R Clarke says:

    This post improves my day with reality and humour – well, my frustration with my ‘latch-key’ bladder as my MS nurse in the UK called it. My current ‘joy’ is that our accessible toilet is being re-modelled and or second bathroom is a challenge to use. Back to my baby days and a diaper. [I use a condom catheter which is a male option that bypasses the pain of self catherisation – with some drawbacks.]

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

    Thanks Penelope we are an accident waiting to come on. I have a blocked tube from my bladder and can’t pee any more so the spc does really help me and I haven’t lost the bladder nerves so I get told my bladder is filled and needs emptying. I have a night bag that stops me having to go to the toilet overnight and that has been good. At last something is going right for me.

    Reply
    • Peggy Wills
      Peggy Wills says:

      Thank goodness for ‘Always’ panties i wear now and have for years. Also thankfully husband will buy them for me

      Reply
  4. Katie
    Katie says:

    Hi i am quite lucky as my bowels have given up and generally don’t want anything to actually come out😂So it happens both ways! Also there are other conditions ,like my partner has chrones , and he needs to plan toilet locations too!Funny how we all do it but don’t talk about it so thanks!

    Reply
    • Peggy Wills
      Peggy Wills says:

      All so true! So far i can still make ot to a bathroom and take a med that has helped me sleep thru nighttime.Thank goodness for ‘Always’ panties i wear now for years.
      seem work. Still look for bathrooms in wherever maybe But
      handicapped bathrooma are not what people think…also a reason don’t visit others homes *sigh**

      Reply

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