Accepting A Life Unplanned

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.

4 thoughts on “Accepting A Life Unplanned

  1. Lovely and very insightful.
    I can relate in so much that I have chronic tendinitis which altered the course of my life. I thought I would be a professional piano player. I became an acupuncturist on the journey to managing my own pain. I miss terribly, the ability to play the piano, and, I find a lot of meaning in the work that I do instead.

    It’s the best we can do – control our own attitude. In all things really.

    I enjoyed your post and I think it will be useful to others.


  2. In life we can’t control what happens for the most part only how we handle it. I am so glad to see you are working with yourself to make the best of things. I share your sentiments myself and I teach them to my daughter who has chronic illness also. I have chronic pain mostly due to OA and RA but she has a condition called VACTERL association and she has so many complications that pain is just a part of living for her. Will be wishing you the best along your journeys and I will follow as you share 🙂


  3. Thank you for sharing this on the spoonie group. I look forward to reading more of them – this seems like a really good start!


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