My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Monday, October 7, 2013

It's just a bad dream

Sorrowing Old Man ('At Eternity's Gate'), Vincent van Gogh
Sorrowing Old Man ('At Eternity's Gate'), Vincent van Gogh
I don't know why I still do it, but sometimes I go to sleep at night, telling myself it will all be alright in the morning.  I won't have EDS in the morning.  It was all a bad nightmare.  Then, of course, I wake up in the morning in severe pain, and the EDS is still there.  Those mornings it feels like I'm dealing with loss of my freedom and the facing the crippling effect of chronic pain for the first time all over again.  It feels like an instant of hope, dashed almost immediately upon waking; a virtual nose breaking punch of reality.  This morning started out like this.

This past week has been bad enough, with missing two seizure medications because I am in between doctors, and need to see the new doctor before I can get a refill.  So far, I've only had one seizure this week, but even one is scary.  I've been having a lot more than usual lately, one to two a week, while it's usually one every couple of months or so.  The increase in seizures started about two months ago.  I can't think of anything different in the last two months.  I've been eating normal food, and other than running out of my medicine this past week, I haven't missed any doses.  My stress levels have been unbelievably high, but when are they not?  My pain levels have been higher the last couple of  months, and that's the only thing I can think of that seems any different than the months before.

The house is a mess, it's driving me insane that I can't clean it all at once.  Ah, I remember the good old days, when I could spend all day happily cleaning, and bringing order to my world.  I hate chaos, whether it's a messy desk, a rowdy crowd, or my sleep schedule.  Some people thrive on it, but I do not.

I've been really behind on my letter writing to pen pals.  I've got a huge stack to reply to from recent letters, and a huge stack to reply to on very old letters.  For some reason everything is overwhelming me lately.  Unfortunately, once I start writing I can't seem to stop.  This means I'll write one person a nine page letter, instead of three people three page letters.  At the end of the day I realize that I've only got one letter done, and it's probably way longer than anyone really wants to read.

Since I went on one medication that has the side effect of lack of appetite, I often forget to eat.  Then, at 4:00 pm or 5:00 pm I realize I forgot to eat today, and I'm really hungry.  So I end up eating all of my food sometime during and after the late afternoon to early evening.  This isn't helping my goal with losing weight.  I thought the side effect of that medication would end up resulting in weight loss, but instead it keeps leading me into bad eating habits.
woman writing
I lost 19 pounds in two months during November and December 2007.  I was at the most stressful part of my entire life (so far), and couldn't eat without feeling very ill.  I walked all day, everywhere.  I got so much exercise from pacing back and forth, fast, nervous walking, not to mention the lack of food, that the weight fell off.  For eight months after that, I lost weight steadily from jogging, walking, and cleaning my house over and over.  Then, the severe pain set in for the first time.  I never thought the pain would get this bad, though.  I'd like to lose weight again, in a healthy way, but I can't seem to lose it with not being able to exercise like I used to.  The stuff I learned in physical therapy just doesn't burn calories.  If I had a recumbent bike, like they did in PT, I think it would be different.  I'd really like to get one.  I've priced them online at Walmart, and I picked out one that looked good; Sunny Health and Fitness Magnetic Recumbent Bike. I'd like to try and save for it after the holidays.

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