I've been getting killer restless leg (and body) syndrome and severe anxiety anytime I try to go to sleep. Not entirely sure what caused the switch, but I'm not really loving it (or its effect on my body...). If I had to guess, I would say the Domperidone. I do a ton of breathing exercises, and take sedatives, but I seem to be excessively spun only at nighttime these days.
So my latest ways to kill time in the middle of the night:
- The twitter after-hours and different regions crew.
- Browsing for new pictures and links on the endless, beautiful, crazy world of the Internet.
- Eating (now that I can sort of eat!).
- Being blinded by the fact that my computer is still too bright even on the lowest settings (photosensitivity joys).
- Writing blog posts.
- Thinking of eating.
- Watching useless late night cable television.
- Doodle journaling.
- Eating.
I should probably go make gluten-free toast with marmalade.
I wish I could describe all the horrors of my recent days and my doctor appointment, but I just can't get it into words.
These are what people want to know though:
- The MRI is inconclusive because they didn't see anything in the area they last found something, but may have found something in a different region of the pituitary.
- My doctor believes it is not enough to cause physical symptoms. My waits for referrals will be very long. I'm back in the unknown :(.
- I was once again implied as being crazy and making up things that are not happening.
The rest is sadly, too painful to talk about.
(Image from WeHeartIt)
xoxo,
Annie
9 comments:
My daughter-in-law has much of the same things you have. And you're right, it is soooo very frustrating. She has Dysautonomia, fibromialgia, restless legs, passing out with no warning sometimes followed by seizures or wetting herself. The only test she has failed is the Tilt Table Test. All others are "normal". I like how they think she throws herself down the stairs. I am REALLY impressed with her ability to "fake" seizures. I feel so bad for her. She has two little ones. She can no longer work which is difficult for her because we was such a go-getter. Her husband (my son) has a brain tumor, though after surgery and radiation, he is mostly ok. He does still have about a third of the tumor that is inoperable and lost most of his sight due to the surgery but,...Oooo sorry. I just realized how long this "comment" is. Just wanted you to know that you are not alone and if you get the skepticism that my DIL gets, I believe you and wish you the best.
Annie, Sometimes I just hate doctors!
xomo
It stinks that you can't get a new doc. It stinks that he isn't listening to you or believing you. Don't loose heart. You know your body better than anyone on the planet doctors included. You know when things aren't right. Trust in yourself.
Don't get wound up about sleeping. I do what I like to call free range sleeping. I sleep when I get tired whatever time of day that happens to be. And I sleep where ever I like, which could be a couch, chair or bed. I've also slept on the floor but most times I'm too sore for that. If I'm awake for whatever reason I get up and out of the bedroom. I don't care what time of day it is.
Keep advocating for yourself until you have an accurate diagnosis, and don't let anybody define your reality for you. Only you live in your body, and you know if you are sick physically and that it is not a mental illness. Even if there is a mental illness, however, a person can still be very sick physically - a fact often ignored by people who don't understand mental illnesses. I have been through this situation and I know exactly how frustrating it is, but I can tell you that if you keep being your own best advocate, you will get some answers eventually that make sense. If a doctor talks to you condescendingly - go to a different doctor.
I too have been fighting much of the same these past few weeks. Things that make ya go gggggrrrr
Annie, I'm so sorry about the doctor's appointment. They can be so dismissive of us (I know you read several examples of that in my book). What frustrates me about your situation is that you can't just go to another doctor. Is there anyone who can "pull strings" and make that happen sooner? I'm just so sorry you were treated this way.
Annie - Just let me at this doctor! I'll set him straight! :-)
Really though .. what is up with the medical profession throughout the world? It is amazing to me that a doctor feels he/she has the RIGHT to say those kind of things to you. I would never attempt to guess what you are going through. If you say it is so, it is so. Period.
I'm so sorry you had to run into this doctor - literally.
As for the insomnia, could the time change be a culprit? It has been with me.
Love you and sending you lots and lots of hugs! You are incredibly special. Please don't forget that!
hope things are going better. sorry about the pain. keep on!
Oh god hun, have been thinking of you but have not been in a good place to reach out: I'm so sorry. big hugs, and keep us updated xxx
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