Would they tell me to try to run if I had a broken leg?

By joanapt

2 min read

My daily routine is almost always the same. Wake up, try to eat and take my medication, lie down on the couch because of the cramps, go to the toilet a LOT of times, and then going back to the couch, exhausted from the toilet trips and the cramps. In a very good day, I am able to go out to the supermarket or for a 10 minute walk.

I have not been properly diagnosed yet, so I don't have the right tools to fight this for now. I am currently taking more exams to find out how to fix this and have changed to a (hopefully) more concerned GI than my previous one.

This has been my routine for the past few months and it has taken a long time for me to get used to this. I used to go to college, go out for a coffee with friends, for a run or just for a walk every day. I was never the kind of person that could stay in the couch all day, let alone not leaving the house for a full week. Every time I try to walk or to do other, apparently simple activities, the cramps make it 100 times more difficult, and they usually get worse when I try to move. I don't know if this is common or if it happens to other people, to get worse with movement, but it definitely happens to me.

I am still not at peace with this and it is extremely hard to see other 20 year olds going out for lunch, going to the gym, or simply getting out of the house. However, I have learned that if I push myself to do that, the pain gets worse, not only in that day, but in the days that follow. So, the effort is not worth it. However, in the eyes of my loved ones, staying indoors only makes me feel worse. They have repeatedly advised me to try to go for a walk or to leave the house. I know that they mean well, and are just trying to help, but I can't even start describing how it hurts to listen to this.

I have had a long journey to accept that for now, I am not able to do those things, regardless of how much effort I put into it, and that's OK. As much as it hurts to stay on my couch, resting, I have listened to my body and this is for sure the best thing to do now. I have tried to explain to my family that I can't do those things for now, and even asked them: "If I had a broken leg, would you advice me to try to run?" I know that my pain cannot be seen as the one from a broken leg, but it makes me feel as limited (if not more) as if I had a broken limb.

How do I manage to stay in peace with this advice if it is already so hard to accept my routine without having people remind me of what I can't do?

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moimeme Member
Keep listening to your body and advocating for yourself. I was in an acute period for about 4 months before we found the right treatment, and I found several things helpful. Drink a LOT of water. I used a 20-ounce glass and made tallies on a calendar aiming for a minimum of 5 glasses a day for my body size (5'5" 105 lbs.) To do that I had to dress warmer than usual because hydration lowers my personal temperature a lot. Yoga pants became my uniform, since all other clothes put pressure on my abdomen with undesirable results. All those hours on the futon were better for my body but bad for my brain if I just watched television or played games on my phone. Listening to music became an effective escape. I wanted music that would transport me - classical and new age for my tastes. And reading became my anchor. I like an occasional thriller or romance, but it was classic literature and nonfiction that made me feel that I could at least feed my mind when actual food had become the enemy of my body. It was a great escape to binge read books on a topic (Antarctic exploration) and in a genre (biography). I'm sorry you've had to suspend your college studies. You might enjoy reading books from a list like "Books every high school/college graduate should read." Hang in there. Things will get better. Then you will be able to find your new normal.
1. joanapt Member
 I am so sorry you had to go through this... I can really relate to your experience. I actually feel thirsty all the time, so I end up drinking a lot of water. And my uniform is pajama pants! Just the thought of jeans squeezing my abdomen hurts... I will definitely try to read and do other things to keep exercising my brain, it might be far more interesting than spending the day watching videos. And I will keep advocating for myself. Thank you so much for your advice and for sharing your experience. You went through this, but came out victorious! That is a huge inspiration for me, you give me hope that this will all work out! Thank you 😀
thedancingcrohnie Moderator & Contributor
I can relate to your story on a thousand levels. First of all, I'm so happy you are using this website as a tool to get feedback. I wish I would have done this when I was first diagnosed. So I applaud you for reaching out and being transparent. It is so frustrating being in that place where you are experiencing weird symptoms, and you know something is going on in your body, yet doctors are unable to diagnose. Hang in there. Keep pushing for tests and even get second, third or fourth opinions. Sometimes, you just need a set of fresh eyes to look at your case. In the meantime, we will be here to support. I used to experience the same routine in the mornings. I would have to wake up about 2.5 hours before I would leave for work. I would be in the bathroom for all that time. Throwing up. With cramps. Bleeding. Diarrhea. Constipation. It was all so exhausting. By the time I mustered up the strength to get dressed and out the door, I felt like I had run a marathon. It was overwhelming to go through it every morning. But I'm here to tell you that things get better. Your body wants to heal so badly, and it's just a matter of finding the tools it needs to get better. Hang in there. Deep breathes and cling to hope. There was a time where I thought I would never be able to function again. I was depressed and really believed I was going to be disabled forever. Today I am doing so well and living life to the fullest. Cling to hope. Get a second opinion. And don't stop urging for tests until you get answers. Also look into diets and try different ones. Diet helped me tremendously. It certainly isn't a cure but it offers relief. I personally stay away for dairy, grains and processed sugars. I hope this helps some. Rooting for you. Always dancing, Elizabeth (team member)

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