Coming up to 20 years living with Polymyositis, I have been doing a lot of reflection on life with Myositis so far.
My parents recently came across a collection of my old belongings stored away at their house. Amongst these treasures were ten years’ worth of journals I didn't know still existed. Ages 12-22 all there in two big crates. These journals were detailing everything imaginable, sometimes up to ten pages a day, so reading them was almost like re-living it all over again.
My teenage years were particularly challenging as I was diagnosed with Polymyositis as a young teen, after four (4) years of tests and symptoms that were getting progressively worse. After diagnosis I was put on intense treatments of high-dose prednisone and methotrexate immunosuppressive injections. Due to the fluid retention from the medication, I was almost unrecognisable and found it very hard to manage my emotions on the Prednisone. As well as the muscle involvement, I had chronic nausea and painful vomiting (my original symptoms but not common symptoms of PM) and the side effects of the medications caused my quality of life to decline significantly.
As a conscientious student who loved school, it was very upsetting to have to decrease to part-time schooling, very rarely being able to make it a full day without vomiting and often missing weeks at a time. My body wasn't responding well to the treatments, so it ultimately resulted in my parents making the life-changing decision to move our whole family to a warmer climate, with the hope I would be somewhat better.
It was very intense reading back over those years of early treatment but it was also incredibly healing. I was finally able to face those painful and uncomfortable feelings I had suppressed and buried deep, deep down, as well as work through the feelings of grief and disappointment chronic illness can bring, which if I'm honest, is ongoing.
It was very hard to imagine the type of future I’d have as a teen when I was just trying to survive. At the time I felt like I was going to feel that way forever and often wasn't sure how I was going to keep going. I found an incredible amount of encouragement and comfort in quotes, scripture and song lyrics that seemed to describe exactly how I felt and encouraged me to rise above the pain and keep going. Despite no one knowing exactly what I was going through, I believe specific people were in my life to give me a timely word of encouragement, to walk alongside me and let me know I wasn't alone.
I have learned a lot about my body over the years. I am continually adapting my lifestyle and continue to take medication (albeit a whole lot less than I used to!) At times it is still very frustrating and far from perfect 20 years in but I know I am very blessed in many other ways. Overall, upon reflection, I feel the most noticeable thing is how much stronger I am on the inside. At times life with Myositis can feel incredibly overwhelming but I am so thankful that each day I face with Myositis, I am given the strength to keep going, one day at a time.
Thank you for sharing your inspiring story.
I could relate to it very much. I too was diagnosed in my teens. It’s been 24 years, but a constant learning experience that gave lot of strength to deal with ups and downs of life. Take care.
@mimswan Thank you for this article! It’s so important to hear about your experiences living with such a rare disease, throughout your life. I look forward to learning more about you and more of your experiences throughout your journey. This is helpful for all of us! Excellent job, and again, thank you!