I was originally planning to post something today about a project I was really excited about. However I think I am going to keep it close to the chest a little longer, let it grow a little more so that maybe it will be able to weather the elements. It will be able to survive both my filters and whatever comments may come. Because I hear a lot of things about my illness and deep down I know people just want to help, sometimes the comments hurt, sometimes they make me want to punch someone.
Things I have learned I don't want to hear during a flare, things that have a great intention. However my filters cause me to hear it in a very different way. I can only speak from my very short experience with a chronic disease, and everyone is different. I am hoping by exploring these filters that I will be able to clean them a bit and change them so that I can hear the intent behind the words.
1. "You look good."
The things that play out in my head when I hear this, include that I am faking, that I have nothing to complain about, that my need to go take care of myself is unseen. I also hear this mask works, and you are getting your love, so you better keep up appearances. Maybe just tell me, you are happy to see me and avoid commenting on my appearance unless I ask.
2. "You are canceling again."
Believe me I hate canceling plans too, I make plans because I want to see you. I am afraid that you will stop making an effort because you feel like I am not making an effort to see you. Maybe just tell me you were looking forward to seeing me, and you miss me.
3. "Let me know if you need something."
This one can actually send me into a panic. Typically when I am in the worst of a flare, I am hyper focused on immediate needs. Literally my eyes go into a panic and start searching around for what I am forgetting. Honestly give me some space and let me know we can talk later, or offer me your shoulder if I need to cry. It is best to ask me about what can support me when I am not in a crisis mode.
I tend to become pretty reclusive when I am having a flare, because I feel ashamed. I feel vulnerable and am overly sensitive. Part of that is because when I am having a flare, I barely sleep, honestly I am not getting adequate nutritution and I am hyper focused on paying attention to what my body is telling me. Each flare is different, and each one has been helped in different ways, I feel selfish because it is completely self involved to pay attention to each and every thing I am doing, eating and feeling to learn more about myself and this disease.
There is no one in the world that misses the person I was before this started more then me. It is a struggle to let go of what I was, so that I can see and celebrate what I am becoming. So I will keep my project a little closer to the heart for now, and breathe as much life as I can into it before I open it up to the elements. Thank you for understanding and your patience.
Question of the day: Take a moment and think about something really close to your heart, and take a little time today to breathe life into it. However that looks to you, nurture it.