You may automatically think not being able to walk is the worst thing about living with SCI. When I was first injured, I thought the same thing. Quickly, I learned that is not so by far. Not for me, anyway.
1. Being cold. Until I injured my spinal cord, I don’t even think it occurred to me I had one. Brain, heart, lungs, kidneys… Those were the main organs you kept in mind. Interestingly enough, the spinal cord assist’s in the functioning of all those organs except the brain. One thing our spinal cord does greatly affect is our hypothalamus, which controls our body’s ability to regulate temperature. Being spinal cord injured, my body is now like a reptile’s. What ever climate I am in, my body tries to achieve that temperature. And while 80° sounds warm, it is 18° below our bodies regular temperature of 98.6°. In a nutshell, I am constantly, painfully cold. The worst part is, once I get cold, it takes two to three hours for me to warm up, regardless if I am in a sauna.
2. Being hot. My injury has taken away my body’s ability to sweat. During the summer months, I have to be extremely careful I do not overheat. It happens very quickly since my body cannot sweat to keep me cool. One summer I suffered from heatstroke and lost my ability to speak. This was very scary, the scariest part being how quickly it happened.
If I could change only one thing about my body, it would be my temperature regulation. When you are freezing, it’s hard to enjoy what you are doing. When you need to keep yourself covered in ice packs and have to run from shady spot to shady spot, it’s equally hard to enjoy what you are doing.
3. Finding good home help. When I was initially injured, I thought everyone who was a home health aide was going to be a version of Florence Nightingale or Clara Barton. Why else would you choose to take care of people?
Unfortunately, this is not the case. I have hired hundreds of girls to help me in my home. I
phone screen them, I interview them face-to-face, I do background checks and I do extensive hands-on training. You may think at this point I would be a good judge (for want of a better word) of who would excel at being a home health aide and who would not. You may
also think I was a good judge of character to feel who has good intentions and who does not.
I am not good at any of it. I have been left high and dry, with a “no call, no show” from staff. I’ve been verbally and physically abused from staff. I’ve had things stolen from my home a
thousand times. All of this done by individuals I thought were going to be fabulous employees.
4. Urinary tract infections. I remember being in ICU following my accident, and telling my nurse I felt as if I was coming down with the flu. She tested my urine immediately, and it
showed I had an infection. I had experienced UTI’s prior to getting injured, and they were bad enough then. Getting one after a spinal cord injury is horrible. You feel like you have the worst flu ever.
People with spinal cord injuries are prone to UTI’s. I experienced them for almost 20 years. I’ve dealt with IV antibiotics at home, weeks of painful injections and dozens of hospital visits. The worst thing was, I felt chronically lousy. There is a difference between being sick and being injured, and I give so much credit to folks dealing with a condition that makes them feel ill the majority of the time.
Almost a year ago, my infectious disease doctor shared some new research with me. He said that people suffering from UTI’s, injured or not, should forego antibiotics and instead, flush their bladder with an insane amount of fluids. Research had proved this more effective, as
bacterias have become resistant to antibiotics from society’s overuse of them.
So I started drinking. Vodka, gin… Any clear liquid I could get my hands on. That’s what my doctor had recommended… Clear liquids. No, just kidding. But it would be fun if that’s what was needed, wouldn’t it? I drank water, and a lot of it. I had a very severe UTI when I began my water fall, but I was determined not to go the antibiotic route. By the third day, I was up to one gallon of water per day, and I started to feel its positive effects. By the fifth day, my infection was gone.
This was a huge accomplishment for me. Not only did I get rid of the current infection I had, I knew I could prevent new infections from occurring, simply by drinking water. Drinking the
amount of water I currently do not only eradicated UTI’s, but also helps my skin stay in great shape and my digestive system functions better. I think the best part is I no longer live in fear of having a UTI occur and the suffering and frustration that goes along with them.
5. Skin Issues. Our skin is our biggest organ. As with any organ, some things keep it healthy and other things break it down. If you are an individual who uses a wheelchair full-time, the skin on your tush takes a beating from the constant pressure of sitting. Skin needs circulation to stay healthy, and when there is pressure on it, the circulation is compromised.
Infections from skin breakdown is the number one complication that will take the life of a person with a spinal cord injury. The great thing is, skin breakdown is 100% preventable. The bad thing is, once it gets started, it’s a runaway train traveling at warp speed faster than you can imagine. Faster than even I can imagine, and I’ve experienced its horrors many times.
Skin breakdown happens from the inside out. This is where the danger lies. By the time something significant presents itself on the outside, you are dealing with part of your body missing on the inside. To heal this awful truth requires months of IV antibiotics, months in the hospital having multiple surgeries followed by months of bed rest at home. If pressure is applied to the newly healed area, everything will fall apart. If you are wheelchair-bound, you
cannot stand, so your only other choice is to lay in bed.
With all of these challenges, prevention is key. Do your best to prevent getting cold. Do your
best to prevent getting hot. Have a backup plan in place if an aide does not come to work. Do your best to prevent UTI’s and skin breakdown. Don’t worry about asking people for what you need to accomplish these things. If you suffer from a complication, you are the one paying the highest price.
Stay tuned for soon to be posted “The Top Five List Of The Most Fabulous Things About Living With A Spinal Cord Injury.”