I felt compelled to share this today. I jotted it down last night when I probably should have been searching for sleep instead.
It feels necessary some times to give voice to the experience of an invisible illness – whether it serves to allow someone else to feel seen or helps someone see another person in a new light…
So here it is. What I want you to know about my life now with Addison’s (at least at this present moment a little over one month in):
- At times, I forget I have it… and then I have a moment when it feels like I’m shaking internally or my legs feel heavy and I remember. But no one else around me can see my symptoms that mean I’m going low on cortisol or I’m dehydrated until they are catastrophically bad which is both good and disconcerting all at the same time.
- There’s no way for me to measure when I need more of my medicines – it’s all based totally on how I feel and being this connected to my body all the time is exhausting.
- I bought a second medical id for my Apple Watch and changed the background of my phone last week because I forgot my medical alert bracelet at home and I just kept thinking what if I crash on the way to work and no one knows that no matter the injury – steroids are of primary importance or I die. I was embarrassed by the overkill and yet oddly comforted by it.
- I had a bad day on Monday, and I was so incredibly frustrated all day. I wanted to sprint through my day and yet my body was going at a snails pace and my legs were so heavy all day. I still don’t know why, and it drives me crazy not to know. But there was also a tangible joy when I feel normal once again the next day.
- I still don’t fully feel it’s real. It’s only been one month… I haven’t fully processed it and yet life goes on. I’m glad it does, it’s a part of being human… and life gives me such joy (also I’d go crazy sitting still!) But there are times when I think – could I freeze time for a bit? I’ve got so much more to learn!
If you are someone battling an invisible illness that is affecting your physical, mental, emotional, or spiritual health… I see you.
If you are not, maybe this post will help you understand someone in your life a little better.
I don’t know… I guess I just feel we should talk about these things more. So, there ya go. That’s where I am one month in…
How are you doing today?
