Presumably as a result of the MCAS I always feel sick (groggy with flu-like symptoms) when I don’t get enough rest, and I just read this comment from a nurse on the Mastocytosis Society page on Facebook: “Extra fatigue can cause a histamine release.” That seems to confirm what I have been feeling.
A quote from the first episode of the tv series, The Dead Zone:
“Don’t you hate talking to sick people? You never know what to say. Just try and be cheerful, I guess, right?”
During one of my hospital stays in 2015, a nurse who was nearly named Amanda stopped in several times to talk to me, both when she was checking my vitals, and a couple of times on her breaks. We talked about life, death, and things in between; deep, honest conversations.
Dr. Foreman: The kid was just taking his calculus exam when all of a sudden he got nauseous and disoriented.
Dr. House: That’s the way calculus presents.
“Why am I always sick?” That’s a question I used to ask myself a lot. Other people asked it as well: “Al, why are you always sick?”
I remember one time I was in the same room as my wife while she was on the phone. She was taking to her sister, who was talking about her husband (my brother-in-law), and their conversation went on for quite some time. Afterwards I said, “Wow, I hope you guys don’t talk about me all the time like that.” My wife said, “No, we just say that you seem to get sick a lot.”
When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.
For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.
This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.