Catch My Pain: Making My Invisible Illness Visible

I have this amazing app on my phone. It's called "Catch My Pain" and it does exactly what it sounds like. It allows me to track my pain very easily. I shade the areas of my body that hurt with a range of colors, the darker the red the more pain, yellow is little pain. It lets me write notes about my pain or body during that time and it has a checklist of what type of pain I'm experiencing.

It's a free app, but you can buy an extra feature that allows you to give a range of emotion, stress, and fatigue. I just make those notations in the "notes" section rather than paying for it. This app also allows you to list all your medications and when you take them. You can set alarms for taking any or all of the medications. And best of all, you can send yourself a printable collection of the whole thing to take to doctors. Or you can just email your info to anyone you want. It's amazing. 

So I took a bunch of screen shots and decided to share them here. It's basically one week's worth of entries. I like this concept in that it will allow my invisible illness to become visible in a way. But, this is only one aspect of my invisible illness. So keep that in mind, this is just a glimpse into the invisible part of my life.

Also, you'll see a LOT of different areas with pain. Some is caused by TOS. Some is caused by CFIDS. And some is caused by CRPS. If for some reason you find it interesting to know which is which, feel free to ask.   

 

 

 

  

  

   

 

 

 

 

 

 

30 Day Chronic Illness Challenge (Days 18-20)

Day 18:

Better? No. But I have become a deeper person. I spend more time contemplating the meaning of life and thinking about what matters. I live with extra intention and put emphasis on things I find to be valuable and meaningful. Similar to people with terminal illnesses, I am constantly aware of the importance each moment holds. I am aware of the limit of quality years that I may have. Most people seem to try to hide from and ignore the fact that eventually they will die. But living with an incurable, chronic, debilitating, invisible illness, there is no way to hide from the truth about life and death. 

Having this knowledge does not make me better or worse than anyone. It just makes life different for me than it is for most people I know.

Day 19:

Scared. Pessimistic (or realistic?). Terrified. Doomed. Hopeful. So many feels. Contradictory feels. Mostly, I try not to picture or plan for a future, because I might not get much of one. 

Day 20:

I recently started talking to some women in an online support group for CFIDS, via email. It's nice conversing with someone who deeply gets it and has been through it all too. 

I've also met other CFIDS patients when I've done events as a "patient spokesperson" of the illness. It's awfully validating sitting on a panel with other sufferers. In day to day life, you just don't see other people with it so you tend to get overly excited about fellow patients.

I chat with people via the Instagram community about life with TOS. That's cool to see how much power using a hashtag has, when it brings together all these patients of this rare disease.