Living with multiple disabling conditions teaches you a lot about life, like how to recognize what you can and cannot control.
I cannot control when or where I will or will not have a flare. I can control how I prepare for the flares that happen. I can also make a conscious and concerted effort to not over do it or over commit myself.
I frequently have to back out of things I want to do. I miss my son’s activities like sports games, concerts, and meets. I miss parties and lunch dates. I end up leaving events I do make it to early. My immediate family is extraordinarily understanding and supportive, as are most of my close friends. Then there’s those people who don’t get it, who think I’m a flake or a faker; like I’d choose to miss out on the things I enjoy. I can’t control what people think about me; I can control how I feel about myself and my healthy choices, to do what I need to do based on the limitations of my disabling conditions.
I truly try to minimize the things I commit to. I hate backing out of commitments, it is extremely defeating and demoralizing. It is difficult to miss out on the things I want to do and the things I want to contribute to. I am frequently asked to do things, to take on contributing roles, or to participate in various activities. I hate that I can’t commit to anything long term. I hate that I can’t participate in many of the things I am passionate about. I cannot control my limitations; I can control my acceptance of my limitations.
I definitely have good days. This summer I had an exceptional amount of good days; the summer before I was confined to bed the majority of days due to my Disautonomia (dysfunction of my autonomic nervous system). I can’t control when I will have good days; I can control taking advantage of the good days that I am blessed with.
Chronic illness completely changes your life. It is tough to juggle multiple chronic disabling conditions. I cannot control how my chronic illnesses impact my life; I can control my acceptance of the life impacts of my disabling conditions. My journey as a spoonie has only just begun. My whole life is ahead of me, and I commit to finding ways to contribute toward positive change and broader understanding of living as full of a life as possible with disabling chronic conditions.