I had a huge nap this afternoon.  I’m feeling somewhat refreshed. I can always sleep. That’s the problem. These damn medications. If I take enough to ease my pain, I am drowsy. If I take a sleeping pill so I can actually sleep, I’m tired the next day. If I don’t take the sleeping pill, I have painsomnia.

That right lower quadrant pain is back. My husband calls it my porcupine. I may have started that. It’s so painful. I’m nauseated. I haven’t eaten much today. That may contribute.

Am feeling slightly disappointed. I originally started this blog to help my friends understand what my life was like. Instead of writing it on Facebook, which I felt was intrusive, I brought it here. You guessed! No one is reading, I’m speaking to people who already know what it’s like.

I find I’m running into envy from people who don’t know what my life is really like. From people who presume I’ve had things easy. I try not to complain about my aches, my pains, my financial burdens, my pain crises, because it’s boring. It’s boring to read about, and it’s boring to talk about. I don’t want to focus on those things. I want to talk to my friends and be a real person. An average person.

Glancing at my Instagram feed, you may get the impression I live a luxury lifestyle full of makeup and glamour. I do buy a lot makeup, and I constantly feel the need to defend this, however it is my main form of entertainment. It is essentially all I do for fun. I do not leave the house most months, so buying some makeup, putting it on, taking some Selfies can be tons of fun! Throw in an old product once in a while, plus my husband goes without so I can be entertained. My children are not huge consumers, and having free time plus loyalty points means I can cash in on sales. It, like most of the internet, is illusion.

I know I have advantages. My husband makes quite a bit of money. Why does nobody ever ask me about the career I lost? The one I’m mourning? Do they know his every success kills me a little inside? But we are sacrificing much of our kids’ future on medical expenses. Without some clever accounting, and massive amounts of luck, we probably wouldn’t be able to retire at all. My husband currently has to work until age 72.

Many people assume I don’t have an income. As a 50th anniversary gift, my husband and I paid for my in-laws anniversary party. They were given a cheque from our joint account. They still thanked him. Sent him a thank you card, and bought him a thank you gift. We’ve been married 15 years.

Another thing is that I am older than many of my friends. I don’t know if it’s the EDS that’s kept my face youthful looking. It could be good genes, or perhaps hiding in my bedroom for 15 years away from sunlight, but maybe people think I’ve achieved things at the age of 30 instead of nearly 50?

I don’t know what to do to dispel these myths. Do I start being honest? How does one be honest and upbeat? Can it be done? Maybe I should try anyway. I’m sick of being treated like an airhead princess.

Stay beautiful, Zebras! 😘

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