My Book is Officially Published!
My book can’t mean everything to everybody, but it can mean everything to me. And now it does.
Tag: spoonie
Almost Walking
It’s been a rough year. I think we can all agree on that, so I thought I’d share some good news—my health has been improving lately. The other day I got out of bed and stood up three times in the span of a few hours, the most I’ve done in my walking rehabilitation in …
The Battle Against Bitterness And Anger
It’s hard not to be consumed by bitterness and anger. In the macro sense, it’s hard for me because, well, my life hasn’t turned out the way I imagined it would. I’m 32 and haven’t walked in more than five years, I’ve been through intense physical and emotional trauma, and because of my illness, I …
The Art of (Not) Accepting And Dealing With Unsolicited Advice
For me, it all comes down to the simple truth that if I don’t take unsolicited advice seriously, I won’t get upset that random strangers with no credentials or medical training think they know what’s best for my health.
Life Without an IV
It’s hard to say exactly why I’ve been able to sustain my recovery without IV fluids.
Advocacy and Acrimony in the ME/CFS Community
I’ve never disagreed with anyone on the fact that our illness needs more research funding and more treatments. These basic needs will never be disagreed upon within the community, and it is especially important to remind ourselves of that when things get heated.
A Little Energy DOESN’T Go a Long Way
If there’s one thing that I’ve struggled with the most while I’ve been sick, it’s finding a balance between doing things I enjoy and doing things that don’t make me sicker. It’s especially hard when almost everything I do either steals my energy, fills my muscles with pain, or makes me feel like I’m going …
How to Ruin a Mattress . . . And Other Things I’m Good At
I’ve been on a hunt for the best mattress for a disabled person, like me, ever since I ruined my last several mattresses. How exactly does one ruin a mattress? The obvious guess might be to have lots and lots and LOTS of sex. And as fun as that would be, I’m not convinced it …
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Advocacy Coalition: A Day Late and a Hundred Million Dollars Short
It’s hard to be hopeful that a cure for ME/CFS will be found when the entire world is looking for a cure for a different illness.
All Work and No Quarantine
It’s hard for me to fault people like this, people who try to go about their jobs and daily lives, unfazed by the reality of a deadly virus. It’s hard for me to fault them because, once upon a time, I did the same thing.