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When you have Spina Bifida, pressure sores are common because a lot of people with Spina Bifida have limited sensation, if any, in their legs, feet, and tailbone area. Pressure sores can be treated if caught early, but you have to always be checking for them because when you have no feeling, sores come on quickly and you may not notice them until you see blood and have an infection. I have limited sensation in my legs, feet, and tailbone, and it is a blessing and curse because it’s nice that I don’t feel pain when I cut myself, but at the same time, it can be bad because I can’t detect highly infected sores that seem to have appeared overnight. Pressure sores are painful for the vast majority of people, but when you have Spina Bifida, depending on the part of your body they are on, often you feel no pain. In this post, I am going to talk about how I prevent pressure sores with limited sensation.
Double up your mat in your workouts- I love Pilates because it has given me a lot of strength, but you do a lot of balancing exercises which can cause a lot of pressure sores on your tailbone area if you are not positioning it just the right way. When I first started Pilates, I got a lot of pressure sores which did go away the more I did it, but in the beginning, I probably cracked my skin after every workout. Tailbone sensitivity can be an issue during exercise, even for able-bodied people because a lot of exercises can put a lot of pressure on certain body parts which sometimes can cause your skin to crack and be very uncomfortable. A standard Yoga mat is not very thick and will not do a whole lot to prevent you from getting sores, especially if you are working out on tile so, what I like to do for a little more protection is I use two mats. A second mat isn’t necessarily going to make it so you never get pressure sores, and you always want to be aware of your body when exercising, but anything that gives you a little more cushion can help prevent serious sores that make your skin break down.
Sit on a cushion– I do not sit in my wheelchair 24/7 because I am able to walk with crutches and only need my wheelchair for long distances but when I am sitting in my chair for long periods of time, sometimes I do get sores from sitting in the same position for long periods of time. If you are a full-time wheelchair user and are sitting in your wheelchair all day long and have been noticing that you are getting a lot of sores, it might be because you are sitting in the same position and putting a lot of pressure on certain body parts. There may not be a whole lot you can do to totally prevent pressure sores, but you can get a cushion for your chair that should provide a little more protection. My wheelchair has a special gel cushion that is designed for people who are prone to pressure sores and is paid for by my insurance but if you don’t have that, a standard pillow will do the job.
Use moisture barrier creams– When I notice I have a pressure sore, sometimes it’s already infected and I need to go to the doctor for treatment but a the vast majority of the time, I catch it early and can heal it myself. At the first sign of a sore, I use moisture barrier creams, which are creams you put on your skin that protect and heal irritated skin. Many moms use them when their babies have a diaper rash, and I essentially use the same thing; it just may have a different name. Moisture barrier creams are a good thing to have if you are prone to pressure sores because a lot of the time, you can heal sores yourself without needing to take a trip to your doctor.
Check your skin daily– When you have limited feeling in certain parts of your body, sores can develop quickly because you don’t feel pain like most people would. I cannot control the fact that I have no feeling in my feet and very limited feeling in my tailbone areas because I can’t change my disability. If I were to cut my hand, there would be no mystery because I have full feeling in that area and would likely know how I did it but if I were to cut my foot, it would be a whole different story. I would likely see the blood, but chances are I would have no idea how I did it unless I happened to see it happen, which is extremely rare. If you have limited sensation in certain parts, it’s important to check your skin daily and pay attention to any red marks that were not there yesterday, even if they seem small because it could be sign that you are having some kind of skin break-down. I always check my legs, feet, and tailbone area after I exercise because leg braces can cause sores if there is not enough padding, just as much as your exercises can. It’s always better to catch sores before they become serious, and an easy way to do that is to check your skin daily!
Shift your weight– When I am sitting for a long period of time, whether I am in a wheelchair or sitting at my desk writing a blog post, I try not to sit in the exact same position because when you sit in the same position for long periods of time, sores can develop. If you can, try and shift your weight every now and then so you are not putting pressure all in one area. Shifting your weight can be difficult for some disabled people because some people can’t do that without assistance, but if you can do it independently, please do.
Pressure sores are something that anyone can get, and you don’t have to be disabled, but it can be more serious for disabled people who don’t feel pain. I feel some pain when I crack the skin on my tailbone, but it’s not to the extent that an able-bodied person would feel it and it’s more discomfort than pain that I don’t always take as a red flag since because the sensation is barely existent. The problem with pressure sores when you have Spina Bifida isn’t necessarily that our sores are worse than what an able-bodied person would experience, but that we don’t feel them and can become a medical emergency with what has seemed to appear overnight. If you are prone to pressure sores due to limited sensation, it can be hard to remember all these things because when you don’t feel pain, you don’t always think about them. If you only do one thing, check your skin regularly because that is the easiest way to identify abnormalities and prevent sores. Do you get a lot of pressures sores and how do you prevent them?
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