When you have Spina Bifida, it is common to have limited or no sensation in certain areas of your body. Everyone is different, and some people have more feeling than others and it depends on what form you have, because people with more severe forms tend to have less feeling than those with milder forms. I have had limited sensation below my knees and none on the back of my legs since the day I was born. Living with limited sensation can be a little annoying sometimes because you don’t feel pain in areas most people would and have to be more aware of certain things, but it’s not the worst part of my disability. I have had limited sensation my entire life, and most days I don’t even think about it because I am used to it by now. Some people may think it must be great to have no feeling in certain areas of your body because you never get an itch, and in some ways it’s a perk, but you still have to think about things most people wouldn’t have to consider. What is it like to live with limited sensation? In this post, I am going to share some realities of living with limited sensation.
You get sores very easily don’t even know it- There are some areas of my body that I have some feeling in and would feel a little pain if I were to cut myself, but in most areas that I have limited sensation, I have no feeling at all. I kind of like the fact that in the areas I cut all the time, I have no feeling, but even though I have no feeling in a certain area, that doesn’t mean I can’t severely cut myself. I get sores all the time, and most of the time I have no idea how I got them, and I only knew that cut was there because I saw a trail of blood. I am not bothered by my limited sensation because I have gotten some pretty serious cuts that look like they would be very painful if I had feeling. I do have to be more mindful because I get sores easily and don’t realize they are there until they are infected.
Sometimes you get an itch and can’t scratch it- Most areas of my body that have limited to no feeling never get itchy, and I don’t have to scratch them. When I had hip replacement surgery, I lost a lot of feeling in the upper part of my leg, and I have regained some of it, but a lot of it has never returned, and I don’t think it ever will. I still sometimes get itches on my thigh but don’t have enough feeling to be able to scratch and relieve the itch like most people. I have to scratch very aggressively to be able to get the itch, and it is the most annoying thing ever. People sometimes think that if you have limited or no feeling, you never get an itch, and although that is mostly true, you can still get itches in areas where you have some feeling.
It’s easier to burn yourself– If a non-disabled person were to sit on a pool deck and it was very hot, they would immediately get up because they would feel pain. If I did that, I would probably continue to sit there because I would not feel pain and wouldn’t even realize how hot it was until I saw burn marks on my legs. In the wintertime, you don’t usually have to worry about sitting on hot pavement because it’s cooler out, but in the summer you have to be very mindful of it. Before I sit on the ground, I put my hand on the pavement to make sure I am not going to burn myself. I try not to put hot things on my lap or sit on anything hot without checking it first because even though I can’t feel something, that doesn’t mean I can’t burn myself.
I sit on things all the time and don’t even realize it- If you have been looking for something and I happened to be sitting on it, it’s likely I wasn’t trying to hide it from you. I probably didn’t even realize I was sitting on it because I have no feeling in the back of my legs, and I sit on things all the time without knowing it. If I am looking for something, I always have to stand up to make sure I am not sitting on it, because I can’t tell you how many times I have sat on something that I thought I lost.
I get pain in different areas of my body- I can’t stand for long periods of time because of my physical disability. I never get foot pain, and if I am standing too long, my feet are not going to start hurting, but other areas of my body will. I am not going to get foot pain if I stand for too long, but I will get low back pain, and sometimes my shoulders will start to hurt because I walk with crutches. I still experience pain when I do activities that put a lot of stress on my legs, and the pain is just in different areas.
When you have limited sensation, you have to think about things that most people wouldn’t, but it’s not the worst part of my disability. I have to pay more attention to my skin and check for sores daily because I can’t get deep sores that seem to appear overnight and not know how I got them. Living with limited sensation has its challenges, and it can be very difficult to figure out how you cut yourself because most times you don’t know how or when you did it. Living with limited sensation is not the worst thing ever, and I would rather repeatedly cut myself and not feel pain than get a deep cut and feel pain. If you have limited sensation, always make sure you are paying extra attention to your skin because catching sores before they become serious can save you a trip to the doctor. What realities of living with limited sensation have you experienced? If you liked this post, please leave a comment below and share it with your friends.
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