At only 41-years-old, I never thought I’d be stuck in a “defective” body. A body that, thanks to Dermatomyositis, sometimes, doesn’t even allow me to walk my young daughter upstairs to tuck her in at night. Dermatomyositis is one of a group of rare muscle diseases called idiopathic inflammatory myopathies, which is characterized by chronic muscle inflammation accompanied by muscle weakness. An identifying factor for dermatomyositis is a skin rash that precedes or accompanies progressive muscle weakness. There is no cure for dermatomyositis, but the symptoms can be treated successfully in some.
Sometimes I scroll through my old Facebook memories and I can see it. I can see how my disease has changed me. I look at the smile on the girl in the pictures today and she looks hurt or broken inside. The girl in pictures years ago, looked alive – happy and free with energy!
The person my autoimmune disease makes me is someone I am not too familiar with… she’s cautious, reserved, quiet, always in pain and some might even call her “boring.” She can’t go a day without pain. She can’t go a day without something new popping up in her body. Most of all, she doesn’t go a day without being insecure. Insecurity is a terrible feeling and my disease makes it worse. I am embarrassed when I can’t walk, when my hair falls out, when I can’t do things by myself or when I have to sit down after doing something for five minutes.
I worry about my husband and who he now sees in front of him. I know I’m not the same girl he married. I worry about my family and how I let them down. I don’t want my illness to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself.
I try so hard to not give in to my illness but I have come to a point where I cannot keep going at the rate I once did. My body is telling me I need to make this change. I don’t want to listen. I know I will have to find a balance and I will make it through this. I will have my tough moments, but I must not let them take over. I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.
I often ask myself, How much pain am I going to be in today? How fatigued is my body? Will I accomplish anything today? Can I actually take a shower? And the list goes on…
This rare autoimmune disease, Dermatomyositis, is a cruel mystery. I go to sleep, well usually try, wondering if the pain will keep me awake and in the morning I wake worrying that the pain will keep me bed-ridden all day. I can say I have no idea what each day will bring.
I often ask myself, How much pain am I going to be in today? How fatigued is my body? Will I accomplish anything today? Can I actually take a shower? And the list goes on…
I live in a constant state of not letting this disease take over my life and fighting the beast inside of me. Living with any chronic illness changes your life. It’s something you are never prepared for and will most likely not see coming.
There are moments that I still feel that empty sorrow inside. Those times where I’m reminded of the truth, that I live with an incurable disease that will never go away. As time has passed, I can say one thing! I have learned to adapt. Do I fall? Yes. Do I flare? Most definitely. Do I honestly feel that much better? Not really. But mentally, I do. I feel as I am learning what works and what doesn’t.
It’s only when we truly know and understand tomorrow is not guaranteed. That’s when you start to live!
But I have to say, this disease is teaching me lessons. I am learning about the people in my life, my disease has truly put so much into perspective. I can say that I feel wiser about my life, I appreciate life more than I ever did before. I see life as the delicate thing it is, and I love much deeper.
The two biggest life lessons in a strange twist of fate this crippling disease has taught me are to live each day as if it were my last and it also brought me back to my Faith in God, which in turn has had a tremendous impact on helping me cope with this disease.
I am not here to promise you that it’s going to get better. But I will promise you that you will become stronger.
We still have a purpose, and we are still very much worthy! We will probably fall, and we will get back up. Yes, this is extremely difficult but we must remember that we are not just chronically ill, we are more! We are Warriors!
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First-I’m so glad you shared and I hope that it helped writing this and sharing; know also that you’ve most definitely helped others ❤️
I’ve been getting rituxan for most of about 3 years. I e tried IVIG, 4 tries and 4 bouts of meningitis so at least for some time, that option is out the window.
I’m assuming you’ve since gotten your rituxan, I hope it went well for you!
hi Kelly..thanks for sharing your struggles and experience; this diagnosis is an astonishing thing to have happen to oneself. My greatest struggle so far is the idea that myositis is, for most of us, an “invisible” disease – that is to say, that it shows no outward signs for the most part, it is not well known and even when you stand before your family, and explain some still wont get it.
You wrote, “I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.”
Kelly, some of them…even the ones that love you the most…wont understand. This will hurt and astonish you; but you can not wait around for them to understand. You have more important things to do. Find folks that do understand, or are willing to do the work on their own to understand; because you will EXHAUST yourself trying to get them to a place that they can not or will not go; and you do not have the time or energy to make someone see or understand this disease.
You will have that one or two..or three (if you are lucky) folks that will get it. that is all you need.
Thanks for sharing Kelly ! I think you have articulated what most of us have felt and feel dealing with these rare illnesses. Thanks for reminding us that we are not alone in our thoughts and that we are warriors!!
Thank you Kelly!