After the Plot Twist

Chronic illness changed my story. Now what?

Living With

And Five More Years Make Ten

By Leave a Comment

(See the post from five years ago for context/backstory.)

In some ways it feels like a lot has changed in the last five years (they have indeed been…a lot…and the plot twists keep coming), and in others it feels like hardly anything has. I’ve been feeling pretty burned out for a while, on top of everything else, and honestly a lot of the feelings are the same, so I don’t have as much to say this time, but these milestones make me feel reflective so I still wrote down some thoughts and updates…

[Read more…] about And Five More Years Make Ten

5 Years

By Leave a Comment

Some people who become chronically ill and/or disabled can point at a calendar at the date when their life changed. For others it is much more gradual. Initially I just thought I was worn out from a busy weekend, then thought maybe I was fighting off a cold, then realized something didn’t seem right but maybe a doctor could fix it, and then eventually, over time, it started to seem like it wasn’t going to go away any time soon. I also keep making connections to brief spells of symptoms at several other times in my life long before things got bad that seem like they could be related, so I can’t really pinpoint exactly when I got sick. What I can do is point at a calendar at the last day I felt good, healthy, energetic. And that day was five years ago today.

[Read more…] about 5 Years

Am I Still One of the Millions Missing?

By Leave a Comment

May is ME/CFS Awareness Month.

A year ago I suspected that I had POTS and was waiting to be tested and seen by an autonomic disorders specialist, but I thought it was a likely diagnosis in addition to the probable ME/CFS I thought I had. No one seemed comfortable officially diagnosing me with ME/CFS, but I had doctors bring it up and agree that it seemed likely it was what I had, and my experiences in the patient community made me feel like I had found people who “got it.”

Last year I was involved with a local group of activists planning and organizing a Millions Missing visibility action in my city to raise awareness for ME/CFS and call for more research funding. I volunteered to print posters and brought multiple pairs of tagged shoes to represent people who were unable to make it to an event near them either because there wasn’t one close by or because they were bed- or housebound by their symptoms. I also put out a pair of shoes for myself to represent the life I was missing due to my own disabling symptoms.

This year I’m not so sure where I stand. (Postural pun unintended for once, but sure.)

[Read more…] about Am I Still One of the Millions Missing?

5 Chronic Illness Travel Tips

By Leave a Comment

Wow, it’s been a while since I’ve written anything here! The last few months have been pretty busy between being diagnosed with POTS at the end of May, starting a new medication in June, and then going on three different trips with family and/or friends over the summer (and getting a cold shortly after getting back from the last one which drew out the travel recovery). I’ll write more later about how I treat and manage my POTS as I continue figuring it out with my doctors (also keeping me busy and away from the blog), but for now I want to share some tips and tricks I used while traveling to balance participating in activities and controlling my symptoms. As I already admitted, I did get a cold when it was all done, so I probably could have paced myself a bit better. On the other hand, I made it through all the trips without bringing on too bad of a symptom flare, so I call it a win!

[Read more…] about 5 Chronic Illness Travel Tips

How I “Came Out” About My Chronic Illness on Facebook

By Leave a Comment

I spent a long time thinking about whether to post about my health issues on Facebook or not. What would people say? Would I lose friends? Could it come back to bite me in the butt later? In the end I decided that it was a risk I was willing to take. I was tired of having to explain myself to every person individually and thought this might make that easier. As it turns out, it worked pretty well! Obviously not everyone I know saw it, but I have had interactions with people after they saw the post and I loved that I didn’t have to start the story from scratch.

Another reason I decided to post about it is I saw other friends share challenges they faced (health and otherwise) and found myself grateful for their openness and vulnerability. I thought that if I appreciated their candor so much, perhaps others might appreciate my own.

I did worry that I might get some negative reactions from people, but I haven’t had anyone close to me react negatively, at least not to my face, and if anyone else saw my post and thought badly about me they kept it to themselves. Every reaction shared with me, whether from close friends or people I hadn’t spoken to in years, was positive. [Read more…] about How I “Came Out” About My Chronic Illness on Facebook