Tag Archives: scared

The Latest Episode

No, I haven’t forgotten about Rx for Distress. It’s just that stuff has been happening and I’ve been feeling and doing worse than usual.

Way back in February, a few days after my birthday, I had this episode. The episode didn’t last very long, but it made me feel so horrible physically that I still lack the ability to spell the words to describe exactly how I felt. I was shaking violently (not like a seizure; more like shaking chills), unable to regulate my body temperature, felt ice-cold internally but was burning to the touch, had an elevated heart rate that would go through the roof if I so much as lifted my head off of the pillow, and spent several hours puking despite my anti-puke medication. I made the mistake of trying to walk to the bathroom during the episode. This resulted in my head feeling like it might actually explode and my heart rate going so high that I couldn’t feel it to calculate it. I had to crawl back to my bedroom so I wouldn’t pass out.

Thanks so much for the wonderful belated birthday present, body. It’s the thought that counts.

I didn’t mention this episode during my March doctor’s appointment because I figured it was just a one-time thing.

Unfortunately, I was wrong. I had another one at the end of May, about 10 days before my every-three-months appointment with my pain guy. This time, I called mom downstairs to help me; I just couldn’t risk getting up. I might not have been physically able to get up.

I didn’t bounce back from that episode like I did from the one in February. For about a week, I couldn’t sit up for more than 15-30 minutes without my heart rate going up and my body temperature going crazy.

I’ve had two more episodes: One after my appointment with my pain guy and another after going to the animal shelter to volunteer and play with the kittens I had to put off seeing because my crappy body crapped out on me.

The episodes seem to be related to exertion – they come on after I’ve been out and about. I still have to limit how long I sit up to keep the symptoms from coming back.

I am truly bedbound now, spending most of my time in my bed or on the couch. I have had to miss family functions that I really wanted to go to. When mom and Isaiah get home, they downplay their enjoyment, telling me that I really didn’t miss much at all. That’s beside the point; I should be able to go. And it’s not just about me, it’s about Isaiah. I hate what my illness is doing to his memories of me. I never could have imagined my life would turn out like this.

I try to be both positive and realistic, but I’m finding it harder and harder to be positive. All of my friends are far away geographically, so I’ve been feeling very alone. I don’t know how I’d make it if I didn’t have the Internet.

I have an appointment with my family doctor on the 24th, which will most likely result in yet another referral to a specialist. I’m not hopeful that anyone around here will be able to help me. There is a little voice inside of me that says there is someone out there who can help me, and that until we find each other, I just have to keep hanging on.

Just keep hanging on.

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Filed under Anger, Doctors, Dysautonomia, EDS, Family, Frustration, Sick, Specialists