Chronic pain changes your life and impacts everything you do because people with pain have to think before doing the simplest task in order to prevent the pain from getting worse. Some people with Spina Bifida have chronic pain, but in my experience, most people who I have met with my disability do not live with chronic pain. I have lived pain-free for most of my life and only started experiencing chronic pain within the last five years or so. As a disabled person with a physical disability, I have always had significant limitations, which is not new to me, but I never realized how much I took for granted until I started living with pain and was not able to do things that I once could without increased pain levels. Pain changes people sometimes for the better or worse because you never realize how many things you do in a day that are privileges until you aren’t able to do them anymore. What things did I take for granted before pain? In this post, I am going to share a couple of things that I took for granted before living with pain.
Good quality sleep– People with chronic pain often struggle to get good quality sleep because if the pain is not preventing you from falling asleep it’s waking up in the middle of the night. Before living in pain, I was able to go to bed at two a.m. and get about eight to ten hours of sleep every night but now if I were to do that I would be incredibly sleep-deprived because I wake up in pain at about six to seven a.m. like clockwork almost every morning. I never realized how much I took good-quality sleep for granted before pain because now I am lucky if I can get six hours of uninterrupted sleep which happens sometimes but is incredibly rare. I went to bed early last night, thinking that I would get more sleep and be more productive today but what actually happened was I woke up several times during the night and slept the same amount. I miss being able to get good quality sleep because you very rarely get that with chronic pain even if you take medication to help you sleep which I do.
Being able to do whatever workout I wanted- I have always been limited to the types of exercises I can do because of my physical disability but now that I live with pain I have even more limitations. Exercise can help improve pain levels but when you live with pain you can’t do whatever exercises you want because some exercises trigger more pain. My favorite form of exercise used to be Pilates but not anymore because I have endometriosis and started experiencing chronic pelvic pain which can be triggered when I do ab workouts. Fitness is not accessible and has always been hard, but I never realized how much I took exercise for granted until I started experiencing chronic pain. Exercise can be very difficult for people in pain and I miss being able to do my exercise of choice. I have to think about how an exercise is going to affect my pain levels and sometimes, I have to do things that I don’t love because it doesn’t increase pain levels.
Having all kinds of energy- If you didn’t have chronic pain and slept and ate well you would probably have all kinds of energy. When you have chronic pain, you never have energy even when you feel like you slept well because your body is always fighting pain which uses more energy. Chronic pain sufferers need more sleep than people without pain but often we get less sleep which does play a role in our low energy levels. I miss being able to eat healthy and exercise and have all kinds of energy because now it doesn’t matter what I do nothing seems to give me more energy and sometimes doing these things makes me more drained. People with chronic pain experience fatigue at levels people without pain will never understand and it’s a constant daily battle. I miss having energy because now I barely have any energy and can’t do a lot of the things I want to do. You never realize how much you take your energy levels for granted until you live with pain and struggle to have the energy to do a ten-minute workout.
Wearing scented products without pain- I live with a condition called Hydrocephalus, which makes me more prone to headache and migraine disorders. I live with chronic migraine and have to be super careful with what scented products I wear because I often am triggered by certain smells, and cannot wear whatever perfume I find at the store that smells nice. Luckily, I have found a natural perfume that I can wear that I am not triggered by, but I am limited to the amount of scented products I can wear before I start experiencing pain. People without pain can never truly appreciate how much of a privilege it is to be able to coat themselves in scented products and not get a headache, because that will never be a reality for me. I sometimes get a headache from scented products that are even that strong, which is something that never happened before, pain that I took for granted.
Being able to eat a meal without pain- When you have endometriosis a lot of the time you will experience severe painful bloating after meals which does eventually go away. I have always had stoma issues after meals and that is never going to change but it wasn’t until I started experiencing bloating that I realized stoma problems are the least of my concern. I miss the days when all I had to worry about was a stoma problem after meals because I would rather deal with that over bloating any day. I cannot eat a meal without a little bit of pain and I miss the days when eating a meal was enjoyable!
When you have a physical disability, life is hard because we live in an inaccessible world that is not designed for us, and living with pain only adds to those challenges. Before living with pain, I complained about how hard exercise was and it wasn’t until I started experiencing pain and wasn’t able to do that as easily that I truly appreciated how much of a privilege these things are. Chronic pain takes so much from you because something as simple as taking a shower can be difficult for people in pain. When you live with pain you have to pace yourself more because you don’t have as much energy and if you don’t you’ll completely exhaust yourself by lunchtime. People sometimes complain a lot and it isn’t until you are unable to do things that you once could that you realize how many things in a day you take for granted. When I could do things more easily, I wish I knew how much pain was going to change my life because I would have appreciated things more. What do you take for granted because of pain? If you liked this post, please leave a comment below and share it with your friends.
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