Charlie Jester shares his #MyositisLIFE as a spouse and caregiver for Myositis Awareness Month and MSU’s #MyositisLIFE project.
As Jerry’s partner of 13 years, and spouse of 3 years, I think I have witnessed just about everything there is about life with Myositis; the good, the bad, and the absolute worst.
When Jerry and I were dating, he was struggling to get a proper diagnosis. Many doctors would tell us that pain was not a part of Myositis (and pain was Jerry’s number one symptom at first), or we heard things such as it’s all in your head, or it’s not in my specialty, and so on. When we finally got the diagnosis of Polymyositis, we were both relieved at first, and then of course scared as this was something neither of us had ever heard of.
Throughout our life and marriage, we have had numerous challenging circumstances, for instance financial difficulties due to illness and, more importantly, Myositis almost taking Jerry’s life, twice. When I was dealing with him being in the hospital on a vent and unsure if he was going to make it through the night, I reached out to the MSU support groups for prayers, positive thoughts, and just to talk things over with those who understood. I received so many responses that helped me calm down and try to learn to take it hour by hour. I am thankful for everyone that was there for me that night, and since.
I am able to see the commitment behind MSU by living with and helping to care for Jerry. While Jerry is able to do a lot for himself most times, I do bear a larger part of the responsibilities for caring for our home, which I don’t mind one bit. The level of pain he lives with is so intense that there are many days he is unable to function. This is why MSU is so important, not only to Jerry and myself, but to the other patients and spouses out there who feel alone, scared, and need others to talk to.
One of the biggest issues I deal with every single day is watching Jerry struggle with pain and fatigue, not to mention trouble walking, knowing there is nothing I can do to help him or to ease his pain. He always tries to keep a positive attitude and push through to do things that I want, even though it may require a couple of days in bed for him to recover. Sometimes I feel so guilty that he does things with me even though it is going to cause him pain. But, I have also witnessed how just getting him out of the house sometimes makes such a huge difference.
When Jerry became involved in the Myositis community, especially to the degree of starting a nonprofit, I was wary. I was afraid it would be too much for him, and at times, I have been right. But, seeing what others say about Jerry and about MSU, I am so very proud of him for lending his knowledge, experience, and his time to the nonprofit and support groups alike. Most of Jerry’s work is behind the scenes now, but I can assure you, he is working hard for you as patients and caregivers. His commitment is 100%.
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