Yay! Pain is Fun!

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My nerve block from the end of May is wearing off significantly, and I am in pain. My face is very sore, making eating and speaking uncomfortable. The back of my head really hurts, traveling down my neck into my shoulders. I’m trying to be as calm and relaxed as possible. I think this will mean avoiding people for a bit. I’m very much an introvert, and I am quite sensitive. Knowing this about myself helps to make good decisions about setting boundaries. I’m not exactly great with boundary setting, but I need to work on this for my own health.

I tried the Cefaly on cycle 2 and found it surprisingly gentle. Almost more gentle than the gentle cycle. Electrode placement is so important. I’m now doing two cycles a day. It is helping so much. I’m still lying in the dark, but can watch TV, so am not bored too much. Using a tablet is tough for too long, and my vision is quite blurry.

My digestive system is very grouchy. I hope I see that GI doc soon. So uncomfortable. I found some exercises for my pubic bone online. I will try those starting Monday. I don’t want to hurt myself knowing we are going to the Banksy exhibit this weekend.  My first non-doctor outing in a year!

I approached my doctor about a breast reduction also. I don’t know how likely, but I am so uncomfortable all the time. I have sores, I can’t wear a proper bra because the band hurts my stomach. The straps even of a bralette dig into my shoulders. Despite the EDS, I have had 10 surgeries, four non-keyhole, and only one took a bit to heal because it was at my waistband.  Maybe? I sent an email afterwards, so we will see. The EDS clinic doctors seem super nice!

So, I am waiting for my treatment to begin, essentially. Saving my energy. I feel like garbage, but I have felt worse. I need some me-time. I’m pretty exhausted from trying to be social. From trying to make friends, from battling sheer assholishness. Putting up walls for people who refuse to accept boundaries. I didn’t realize it would be this much work to explain and explain again things that seem so simple to me. Like, please don’t ring my phone repeatedly after 9:00 PM because you feel chatty. Or ring my phone repeatedly at all. Or write nasty comments on my Instagram page because I haven’t returned your DM. You can see me writing about chronic pain.

I’m tired.

Happy Pride Month!

🦓

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