Cauda Equina Syndrome with Incontinence and Living
For many that is the ultimate contradiction is living with incontinence and CES. For others it is the daily goal or something in between. For myself it's the in between. I was blessed to have survived right leg paralysis from cauda equina syndrome (CES). While my back and leg remain weak, I have my back brace and rollator, cane, assistance of my girlfriend, and a caregiver. I am fortunate and I know it.
I live in an area where movie theaters, restaurants, shopping malls, even sports and concert venues, and stand up comedy clubs are all a short car ride away. My close friends are familiar with my needs. Parking garages and parking meters are plentiful.
After years of Physical Therapy, Aquatic Therapy, and other therapies, I’m fighting like hell every day to reclaim my life back as much as possible. This is not a one size fits all chronic condition. My CES and other conditions resulted in incontinence. Others among us are the opposite and have the retention and eliminating our natural bodily waste is done via permanent or intermittent catheters and colostomies. We all have our management routines and necessities. It’s going to be different for men than it is for women. In my case I adapted. That's the key. Adapting. Evolving. You can’t have a closed mind. Don’t be afraid to politely and firmly advocate for your needs when out in public.
I was fortunate. I acquired 2 different cards to carry in my wallet. Both identify that I have continence issues and special needs bathroom issues. On the back of one of them is pictures of products and I was able to mark the ones I prefer. It states that I prefer these products and that I use a catheter only when absolutely necessary. I’ve had my issues for a long time. Intermittent catheters while helpful, are risky given the numbness, neuropathy, and inability to immediately feel damage. As a male, condom catheters are an option.
The other card has on the back a place for my name and also a place for a physician to sign. I have a wonderful physiatrist and she signed the card. I have only needed these for bathroom access on one occasion so far. This card provides something that is an official verification of my needs. It’s a kind of wallet sized Doctor’s note.
Unfortunately, while the cards are great examples of documentation and verification of the medical necessity of my bathroom access, I can’t recall where I ordered the first one from. The other was from a medical company and based on laws in their state, but even without the same laws here in my state it is still a great assist and both verify my medical needs and even preferences. It isn’t fair that such things are needed and after 8 years I am certainly no longer suffering from shame or embarrassment. I have found that they are good to have when I’ve found myself somewhere that has an employees only bathroom access policy.
People don’t question anyone they see that have obvious disabilities. With invisible disabilities and chronic conditions they are less cooperative. If you have only a cane they are less cooperative. Vertigo and balance issues are safety issues. Don’t be afraid to have a spouse or caregiver accompany you into any restroom you are comfortable in. If worried about mixed genders in one restroom ask management beforehand. If there is not a family restroom available that choice should be made, and if the state has a law on restroom accessibility it must be followed.
What about incontinence products?
In this crap show, CES, your new life may be dominated by incontinence. Think about continence for a moment. How many times is a bathroom used in a day? Everyplace has restrooms of some kind. How many times do people “hold it” in a day?
You will learn the best products for you. Pads? Underwear? Diapers? You will learn the best fit and size and absorbency. The products you choose for a short outing or trip to the movies at the theater a couple miles away will be or should be different than what you would use for a stay overnight someplace or on a trip.
It’s 2018. Everyone has bags and purses. Men and women both. Messenger bags and small backpack purses are popular with both men and women. I have a Coach Black Messenger bag that goes everywhere with me. I can’t use a traditional mens wallet and keep it in my back pocket and sit on it. My bag is a diaper bag and basically a purse. It doesn’t make me feminine or less masculine. I’m sure people notice or have thoughts. But I don’t care and its how I live with my conditions.
That's the key phrase. LIVE WITH. For over a decade Depend adult absorbent products had a catch phrase “Get Back Into Life With Depend” That is the truth. I am living.
I am blessed to be in a major sports city and occasionally I am gifted tickets to NBA games here. Go Pacers!! I’ve traveled and flown. I’ve gone through security checkpoints and TSA. No One should be ashamed of hygiene needs or apologize for them. People with and without disabilities have hygiene needs. All of these needs require absorbent products, bathrooms, and privacy. An individual with disabilities and a spouse or caregiver must be able to help in many situations. It’s really no one else’s business but it might have to be. I’m polite and discreet, but firm. Yes, I have gone to movies and had leaks. I’ve gone to friends homes and had leaks. I deal with it and move on.
It doesn’t matter what the needs are and what the appearances are. In public people are mean and rude and they judge and they don’t understand. They will stare. I’ve heard people discussing or snickering at me in the bathrooms.
I’ve seen the looks and stares. I’ve had to be escorted to change with help in women's restrooms. No one's privacy is being violated. It's not in the open. Everyone is in the bathroom to do the same thing. Deal with bathroom needs and freshening up. We all pee. We all poop. I’ve had to discreetly talk to friends wives and ask where I can dispose of my products and change in their homes. It’s not fun. But that’s how I am able to live.
Find a bag that works for you, find the products, set your goals and understand your limits but LIVE. If you don’t have to be homebound and bed bound follow your personal pain management protocols and don’t exceed what you can tolerate BUT GET OUT THERE AND LIVE! That’s what I want to encourage you to do. It took me years to get to this point.
I didn’t have anyone encouraging me to live out of my home. I wasn’t reaching out to blogs or other resources. Don’t let CES, diapers, pull-ups, catheters, nor strangers keep you prisoner in your home! If you have to leave for the doctor's office or physical therapy, plan a social activity.
According to the National Association For Continence 25 million Americans have incontinence* . That’s almost the equivalent of the populations of Canada and Australia’s, just to provide perspective. SO LIVE! Don’t be ashamed.
Discuss your incontinence with your medical team. Go to the movies, museums, and comedy shows. It’s all about living with Incontinence. I live with incontinence. I live with CES. I no longer suffer from CES or suffer from incontinence, because I LIVE with CES. Just like we have adaptive equipment we have our incontinence gear. It also is a change of thinking. Adapting the mindset.
CES should not be the end of your life, it's a new beginning with new adventures and challenges; LIVE.
ADAPT TO LIVE! Do so without shame or apologizing!