Linda shares her frustration that such a small workout took me down like this

I’m…so…FRUSTRATED!!

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare - recover - repeat.1 min


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In-home therapy ended last week, it’ll be about a week before outpatient therapy can start so I went to the gym! I can be found on my bed for the next eleventy-hundred hours.

I truly didn’t do anything that would be considered overdoing it. I only did five minutes on the bike, then went through the home routine she left me, plus a few arm workouts with lowest weight dumbbell.

Yes, I know it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

Driving back home was incredibly difficult and it’s less than a mile drive. This was my concern being discharged from in-home therapy. When doing inpatient and in-home therapies, if we pushed it was okay, I could get right into bed (as opposed to in/out/in/out of the car, driving, walking from car, etc.).

Myositis patients, donate plasma

I’ve been in bed since getting home two hours ago. Pain med taken, maybe took the edge off but barely. I’m frustrated that such a small workout took me down like this. I’m frustrated with how very many times I’ve had to “start over.” I’m just frustrated! Yes, I know it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

This is my reality, and the reality for my family who sees this up close and personal, day after day. All my smiles and insistences that “I’m fine” fall on deaf ears as far as they’re concerned because they SEE the things I think I’m hiding.

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare – recover – repeat. I want things to change but all the wanting and working hard just doesn’t matter when dealing with a chronic illness like Myositis. I know that continuing to want more for myself will at least always help mentally. I’m just tired today of the physical failings of my body.

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Linda Rabinowitz

I'm a mom of 4 kids, diagnosed with Antisynthetase Syndrome/Dermatomyositis in 2016. My kids are all adults now (or so the law says lol!!), but my youngest who is 18 has autism and, while he continues to make incredible strides in independence, there is still a lot he needs compared to most 18yos. I was a stay at home mom for over 20 years until getting divorced. I returned to work in very early 2015, then had to stop in July 2016 as my job was very physically demanding and, being that my wrists would collapse when trying to hold even one shoebox (I worked at New Balance), it was time to stop. Now I'm just trying to find my way in this new world of chronic illness I've been thrown into.

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