Today is one of those days. Every part of me hurts. I had to push myself to get out of bed this morning. My body tried to refuse. These are the times I feel most frustrated because I don’t even know what I did to cause so much pain. Throbbing, achy, uncontrollable pain. From my toes, knees, and hips up to my back, elbows, and neck all of it hurts. I tell myself to breath, to pace myself, that it’s all going to resolve. I force my mind to stay positive not allowing myself to feel too depressed.
After being misdiagnosed I was finally told I was dealing with Joint Hypermobility Syndrome with fibromyalgia, and all the symptoms that come along with them. I am still being monitored for Lupus with continued follow ups. When I first heard the Doctor say hypermobility I was completely thrown off. I had never even heard of it. My interpretation was I was basically too flexible and it caused my chronic pain. It, of course, is more complex than that. I am still trying to wrap my head around it and figure out what the heck my body is doing.
I won’t pretend to be an expert. I know there is Joint Hypermobility Syndrome (JHS) and Ehlers Danlos Syndrome (EDs) type III aka hypermobility type. The difference between JHS and EDS still seems to elude me. Sometimes I hear they are the same thing, other times JHS is when you’re the only one in your family with hypermobility issues with pain and EDS is when it is hereditary. I, honestly, couldn’t give you a clear answer at this point. What I can tell you is I have it. Even though when I was first told I thought my Doctor had it all wrong, it totally makes sense now.
I realize I’ve had hypermobility since I was a child. I dealt with very mild issues. I can remember always being super flexible, I never had to stretch, I easily bent this way or that way. The one big issue I always had was loose ankles. They’d always hurt after running or dancing. I rolled them constantly. I just thought I had weak ones. As I got older there were other clues like severe TMJ but in my mind all my issues were separate.
Everything began to change greatly when I became pregnant with my third child. Then, six months after giving birth I began to notice I was having anxiety, fatigue, and pain. I thought it was all due to my hormones and possibly breastfeeding. I kept telling myself to get it together and really believed it was all in my head.
The scariest thing is when you feel like you lost total control and have no idea how to get it back. I stopped breastfeeding after eighteen months. I thought that was my issue. A busy home, \breastfeeding, not enough sleep, not enough “me” time, something was causing issues but I knew I could handle it. I just needed to make adjustments, right? Imagine my fear when things only got worse. I became panicked.
After a little over a year and a half I FINALLY realized this is beyond the scope I can handle on my own. In my mind it would be easy. I’d need to do this or that and BOOM I’d be my normal spunky self. That’s not the BOOM I got. Instead I had a series of blood test, several different doctors, and many months go by, all while my health deteriorated to finally get diagnosed but still monitored for possible other issues.
Deep breaths. This has been a hugs process and crazy overwhelming. I did learn why all my symptoms began to hit me so intensely, I actually never even knew that this was possible. I always have had these issues as I said there’s been little hints throughout my life. One of my Doctors explained sometimes huge/ traumatic life events can trigger disorders/ diseases to , in a sense, “wake up”. My big life event was the pregnancy and birth of my third baby. I have always had these imbalances but they were asleep.
There’s a lot that still confuses me. Even more I am trying to understand. It’s like all my small issues became amplified to the max with me still trying to figure out how to balance it all. Most days I am positive. I am able to be happy, I woke up to see another day with my family. I have weaknesses, feeling useless and needy is one of them. I am taking everyday with a grateful heart and trying to handle all this with grace.
This is my experience with chronic illness. There’s no end to the pain, just management, there aren’t any clear answers, just hope. I am ok. I just have my days where I wonder if there is more I can do. Is there something I’m not understanding? I will continue on my path with the perseverance that one day I will know what this all is and I will live. I will live LOUD!
*** Please be kind, written freehand with limited edits***