I have been told so many times, “I never thought about that…I just thought your legs didn’t move.” I remember being at a funeral gathering and there were steps into the house. A couple of people were insisting to me that they could just hold onto my arms and help me up those steps if I would just get out of my chair. My legs were not the only problem! I have weak upper muscles, I have no lower back muscles, I have no lower stomach muscles, I have no rear end muscles, there are no muscles to hold my knees locked in, and there are no muscles to keep my ankles from rolling over. If they were to grab me by the arms, my upper body would stretch out and I would still look like I was in a seated position. I cannot get my rear up in the air…let alone move that leg they are talking about. I don’t think they are going to help me up any steps anytime soon…unless they want to carry me up in my chair, or let me get up them my own way.
Besides non-working legs, and depending on your level of paralysis, there are some other things that just don’t work. These are things that are not seen by others much, but they are non-stop in our daily lives. They are also some things that are hard to talk about because if you did, you would sound like you were complaining every day. We don’t like people who complain all the time, and we are quite sure you don’t either. So, these are things we deal with, and can at times be more frustrating than the non-moving body parts. It is many of these hidden issues, that affect our daily lives and activities.
Our bladder has no control. A paralyzed bladder responds in one of two ways – either it has no control to stop the flow of urine, or it has no control to start the flow. If you cannot stop the flow, you will wear a leg bag that will collect the flow of urine throughout the day and then you will empty it out periodically.
If you cannot get the urine to flow, there are a couple of different methods you must use. Your bladder will continue to fill up, and if you cannot empty it, it flows back up into your kidneys and it is very dangerous. One method is the use of a catheter, which is a small tube that you insert up into the bladder, and it empties through the tube into a container or toilet.
Another method to empty the bladder, is the Crede method. This is where you push on the bladder on the outside of your body and squeeze the urine out manually. It can trigger a reflex that will allow the bladder to open and release until the reflex is over. You have to void enough to make sure you can keep you bladder healthy. You keep this amount measured by a urologist to make sure that you are not containing too much urine. This is my personal method of emptying my bladder and it takes a little while to do this. My urologist is very pleased with my bladder care and although I may have to use catheters in the future, this is working for now. Because of not ever being able to fully empty our bladders, we are very prone to urinary tract infections which can get very serious very quickly as our sensation is not there to let us know when we have one. UTI’s are one of the major aggravations and complications of paralysis.
Too much info right? We thought so too when we realized what paralysis has done to us. Our bladders do not function and neither do our bowels. We have to train our bodies and develop what we call a bowel routine for our bodies to work like they are supposed to. Once again, the lack of muscle control can make for some embarrassing situations. This issue makes for some emotional days for us. You should hear my story about my hour flight back home from London…and they do not make accessible restrooms on planes. Not good. That is the reality of life and why it is important that you please do not use a handicap stall unless it is an emergency. It does become and emergency for us. We all have a new pity for those little babies laying on a cold changing table in a public restroom. We are too big to do that, so it can ruin a fun day real quick. Because we try to avoid this scenario as much as possible, we have to “time” things. This is a learning curve as you try to read your own body. Traveling, diet, stress, a little tummy bug…any of these things can wreak major havoc on our schedule. So, it is an area that always has to be tweaked and you must stay alert to your body to keep your health.
Our bodies thermostat, to heat or cool or bodies, is located in the spinal cord. A normal, healthy human is able to maintain a constant body temperature of approximately 98.6F despite the temperature of the environment. In a hot environment, the body sends a signal to the brain via the spinal cord to say the body is overheating, the brain then sends a signal back down the spinal cord and tells the body to cool itself by perspiring which evaporates and cools the skin preventing hyperthermia. In cold weather, the body senses the lower temperature and our brain tells our body to constrict the blood vessels in our extremities, and keep the warm blood around our vital organs preventing hypothermia.
When the spinal cord is damaged, the thermostat is broken. It takes a very, very long time to warm up if you get cold, and it takes a very long time to cool down once you have cooled off. There are tricks that you learn such as a hot shower to warm up, or cold compresses on your neck to cool down. The sweating system messes up also as many of us do not sweat below our level of injury which also makes cooling down a problem.
There have been times, that my body was so cold that I felt hypethermic. My thinking was very fuzzy, and I could not concentrate. I was not out in the snow. I was in my house and had just went out on my porch to talk to someone for a few minutes…wearing a coat. I just could not get warm. We are thankful for dual air control in our van. This summer, I have my heat on many times in our van, and I typically sit under a blanket every evening. I do not have as much trouble with heat as I do with the cold, but I have to be careful as I overheat much quicker than I used to.
My actual damage in my spinal cord is at the C5-C7 level. I have movement and sensation in my arms and hands, but they muscles get very weak when I am sick or tired. I have spotty sensation through my upper torso and have upper muscles that also get weak if I am sick or tired. I am an incomplete and am diagnostically classified as a TI0 because that is the level that I have no sensation or hardly any movement from that level down.
Only low-level injuries [TI2 or lower] will not have their breathing or coughing affected. Many chest and abdominal muscles that help with your breathing [that you never even think about] will be affected by paralysis. In higher cervical levels, the muscles are so completely paralyzed that a ventilator is required to push the air in and out for the person. In lower levels, and depending on the degree of paralysis, your weaker muscles can breathe for you. Coughing is very hard because your cough reflex is affected. Coughing is very important to clear our throats and keep our lungs clear. This is why paralyzed people have a much higher risk for pneumonia.
Many of you who know me, know I love to sing. I can still sing but the amount of air I can hold, or how long I can hold out a note, has been compromised. I just cannot get a deep enough breathe to hold out long notes. I do not notice a difference when I am just breathing regularly, but if I try to take in a deep breathe, it takes a lot of work. I can cough but I cannot get a hard cough out. Every level is different. I have upper muscles but they are weak. Once again, when I am sick or tired, everything gets weaker. Like anything weak, exercise is the best thing. Getting activity where I have to breath harder, and singing are great exercises for my weak respiratory muscles.
Many of us are on disability obviously because we are paralyzed, but there is more to it than that. Anytime the central nervous system has been compromised, you tire out very quickly. That is why when you suffer from a concussion, you want to sleep. A stroke, a brain injury, a sever concussion, multiple sclerosis, spinal cord damage…these are all things that affect the central nervous system. If you were to hike uphill all day long, you would reach the top exhausted. The time it takes you to reach a level of exhaustion happens very quickly for us. Our compromised systems just can’t handle it. A day out for me, which is so wonderful, would be equivalent to you taking 3 days in a row of non-stop activity. To me, this is one of the most frustrating parts of paralysis. I love to be busy and active and my body just will not let me. I try so hard and it wins. Learning to budget my energy has been the thing that I cannot seem to figure out. I am doing better, but I always think I am the Energizer bunny or something. In reality, I am a cheap brand.
Because of the energy levels, and many of the other hidden issues, it is very hard to work a full-time job. It is hard to predict what our day will look like. When will we have an accident and need to go home and shower? Are there colds going around that could land us in the hospital because we struggle with a common cold? Will I wake up with another UTI? Do I have the energy to work that many days in a row? These are very real questions for us. There are those out there that feel that drawing a disability check is the greatest thing in the world. It is a blessing, but we would love to have the health to work like we once did. I am a stay-at-home mom and home school and I struggle just accomplishing the daily work…and often just can’t. I don’t really care what people think about me or the way I have to run my home. I am just happy to be a mom and be alive for my children. My kids are pretty glad about that too.
I won’t use this post to get into the emotional side of paralysis, but that is also a hidden part that many forget about and misunderstand. It can be as devastating as the physical side. I will write about this separately.
In conclusion, when you know someone in a wheelchair who might be late for an appointment, might be in a bad mood, maybe can’t stay in the heat or cold too long for your activity, and is aggravated that you are in the handicap stall, then please be patient with them. They are not bitter cripples. They are just dealing with hidden things that don’t work and can’t really talk about.
More in my Disability Series:
What Do You Say To & How Do You Help A Newly Paralyzed Person
Understanding Spasms and Range of Motion Exercises
20 thoughts on “Things That Don’t Work When You Are Paralyzed…Besides the Obvious”
Reblogged this on Ferreting Around and commented:
Another excellent piece by Alicia Reagan on the finer details of living with paralysis.
Thanks for helping to educate those that are not aware of these “things that don’t work.”
Alicia, Just wanted to tell you I read all of your posts and even though I have worked in a nursing home for 20 years, I am really getting an education. I guess we don’t really think about all the things that go along with paralysis. Thanks for sharing your life and faith and your struggles with us. I am from up north and had the privilege of getting to know the Boyers when they worked at our church. Prayers sent your way when I read your posts!! I am glad the Lord has blessed you with that stand up thing and power for your wheelchair and hope and pray He will heal you. Well, one day He will give the redeemed new bodies!! And every day we are one day closer to it! I hope you have a good week!!
Thank you so much for reading my blog. I appreciate you writing and encouraging me. The Boyer’s are wonderful people and dear friends. :]
ThanksSO much for sharing all this!! Helps us not in your situation understand a wee bit what your struggle is like. I will certainly never use the handicap stall again no matter how bad I have to go 🙂
Thank you. I appreciate you reading the blog and for not using the handicap stall. :]
Thank you for sharing. This helped me to be more aware of the needs the others. From now on, I will squeeze myself and my daughters into the regular stall. I think we moms out shopping with little ones justify ourselves as “handicap” in those moments. You’ve made me realize how grateful and content I should be that we are able use the smaller stalls.
Thank you! 🙂
Thank you for your honesty in writing these things. Ah the bladder and bowel issues – some days I think those are the worst parts about this whole thing. Thank you for sharing about that with your readers.
Great post. Much of it also holds true for hemipeligics who have had strokes. Thanks for sharing it.
True!! Thank you for that added perspective!
Thank you for this! My husband was recently paralyzed in a work injury. It’s been devastating to him. So many emotions. He has always loved work, found fulfillment in it, but he’s limited in what he can do now. Very hard on him. I tell him every day that he is my hero. He is. One thing we’re trying to figure out now is lovemaking, achieving orgasm for him. That’s something I never thought about. Hell, I never thought about any of this before his injury. Having a support group has been very helpful for us. We’re still trying to find our routine, where he knows his limitations and where I know when to step in and help. But we’re going to make it! We always have and always will.
Thank you so much for reading and commenting! You are awesome to support your husband through all of this. Hang in there and keep coming back. We talk about a lot of things here. 🙂
Hello Alicia, I’m a C5-C7 paraplegic myself and am on my 3rd year of recovery. I have been experiencing new sensations in my legs lately when I walk using a walker and afos. I like to tell myself that the feelings I am getting are my legs coming back to life. God willing, they will this year but I have to do my part. My concern is this new sharp needle like pain on my hip. It actually started on my butt and then moved to the hip. Do you have any info about this? I also want to thank you for what you are doing here. I just came across your website while trying to figure out my new feeling. I know now why I didn’t bother to look up for help like this earlier, my emotions were all over the place, but this info you have here is beautiful. I don’t have the time to do something like this but I do think of helping out others if I was to get a chance. Please if there is any way that I can help, I am willing.
Hi Eric! Thanks for stopping by and writing me!
As far as the pain in your hip, that is very likely nerve pain. It could also be that since you are experiencing new sensations, that pain will be one of them. I know that as I gained a little more in therapy, my pain and spasms also increased. Although it is a literal pain in the rear, I have learned to use it as a reminder that I need to move around and do a pressure lift. I am assuming that my body tells me that I need to reposition and am uncomfortable. So, I try to look at the pain as a my body talking to me and I adjust. I wiggle and move around all the time for my pain. A good stretching program is a MUST so please make sure you are doing that.
I am so glad that you want to reach out to help others. It is the best way to deal with an injury like this. It gives you something else to focus on and it gives meaning to what we have been through when you help another person. So…do something for sure!
One idea, is to just start a youtube channel and video how you do things! Share it through your Facebook. It helps others learn in our situation and it also helps AB’s understand more about our life and educate them. Many are truly and genuinely interested in learning more – they just do not know how to ask.
Thanks for writing!
This is great. I am a newbie to the disabled world (2014). I am a T6 and just this post alone has explained what my body is doing and why (I didn’t understand why my arms were Solomon tired and now I know.) Thank you so much. I will be reading more?
I have been struggling with the changes brought in by my neurological condition- each change brings up a new “thing I took for granted” that is simply not there anymore…
I am fortunate in some ways, in that I didn’t have everything happen at once- but at the same time, the progressive nature of my condition leaves me in a perpetual state of figuring out what does or doesn’t work body-wise. I often have that thought “what do I get to lose next?” I recently have been losing the ability to walk, due to nerve damage in my legs… I also have lost strength and dexterity in my arms and hands, despite constant exercises to maintain and build up my strength… I have had to use a wheelchair for a month now, having almost no control over the muscles in my left leg and weakness in the right.
Worse than the physical paralysis in parts of my body is the fatigue that comes on quickly with little warning, making everyday things like making food or going to the grocery store- where I must load and unload myself and my wheelchair from the car, I have come to realize that I need a van to maintain the same Independence I have living alone with no support system. I also am getting to need hand controls and assisted steering… I am always amazed at the difference, not all that long ago (2 years) I was able to run, hike, swim, and fling 100 pound boxes on conveyor belts at my job. Last summer I lost my job as I was no longer able to lift the boxes, and often was overcome by terrible bouts of fatigue that had my boss telling me to go home.
These changes are frustrating, but I don’t think I would trade my life for another- it’s all part of my life and I own it- the good, the Bad and the WTF now?
I am so grateful for this blog in a completely different way. My brother had a C5-C7 injury in 2006. On 5/31 he passed away unexpectedly. This blog makes me feel like he is talking and I could not appreciate it more because I miss him terribly ❤️prayers to all of those in this situation and the families as well
I am so happy you found me and I am so sorry for your brother!! Please come often!
Your post has brought me to tears. I wouldn’t say it was in a bad way, it’s was because I completely understand you. And reading something, I too could relate to. To hear it from someone else, and know that they get u on how situations make us feel. I’m glad I stumbled upon your page. Not saying that I need to prove to my family or friends of some of my struggles or explain why I’m late for something. This gives me something to show them a better way of explaining it from another person’s situations. Thank you for sharing. I was once paralyzed and thankfully have been blessed to walk again. But just because I can walk again, ppl don’t really know all the behind the scenes issues that continue to remain. Thankfully I’m a very optimistic person, but I would be lying if I didn’t say that I don’t have my moments of frustration and my down days. Which can also leave me to get mixed feelings. Such as being frustrated and upsetting to let my situations make me feel trapped from the world (how ur London trip was). I feel that upset one second and then the next I’m upset with myself for being upset about it. When I know things could be worse, so I know I should be happy that it’s not. But then, I remind myself that I’m human, and I’m allowed to have those feelings of frustration. Hope all is well with you. And may you be Blessed. 🙂