My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Monday, November 26, 2012

Locked in tiny rooms

I hope everyone had a nice Thanksgiving.  We had a roast with onions, potatoes, and carrots, with rolls.  A friend brought over leftovers from his family's Thanksgiving dinner, and DH had some of that.  We were going to have either a ham or a roast, but when we looked at the prices on hams, they were amazingly high, as were the prices on beef roasts.  So, we got pork roast, and it turned out very nicely.  We didn't eat until nighttime, because my pain levels were so high I couldn't eat.  I had to lay in bed clenching my fists, screaming, crying, and trying not to vomit, from the pain that afternoon and evening.  That night, the pain lessened enough for me to eat, so we had our roast and rolls.  I wanted to make pumpkin pie really bad, but I just wasn't able to do it.  Our friend has brought over three slices of his mom's pies, so we split each piece of pie for dessert.  I was very satisfied with our meal.  Jim finally made the pumpkin pie the day before last, because I still am very bad off.

I keep having dreams of being beaten and locked in tiny rooms.  I know what they are about, but I keep having them anyway.  I dream I'm being beaten because I'm in so much pain, I feel like I did when I was beaten before.  Actually, I hurt a lot more than then.  Secondly, I get locked in tiny rooms in my dreams because I feel so claustrophobic in life because I'm stuck home all the time.  The whole world goes on around me and my only connection to it is my computer.  I worry about becoming bedbound from pain. I don't even worry anymore that someday I may be in a wheelchair.  All it makes me think is that maybe when/if that happens I'll be more mobile and can get out more then.  Right now I am on a walker with a seat, and have to rest often.  I have to use the scooter at Wal-Mart, which I hate because people are so rude to people in scooters.  Trust me, I'd rather be walking normal.  In the house I walk with a cane or by myself, but I have a tiny house,with no stairs, too.  I am locked away from the world, and it is very lonely.

I got out  to go shopping on Thanksgiving for our meal (we weren't able until then) and ended up in horrendous pain.  I got out the day before last, also, and I was in so much pain I was in bed the rest of the day crying.  On a normal day I have to rest my joints multiple times a day by laying down for a few minutes to a couple of hours each time.

I am so frustrated.  Here I am, only 31, and my life has turned to this.  I'm so scared that next I'll be bed bound, as I almost was before.  The cold is getting to me really bad this year, and the temperature is just now starting to really drop.  Oh, and my rheumatologist still hasn't called in my fibromyalgia medication!

I've been trying hard to develop other hobbies, and to work with my spirituality, because I don't want to get to the point where I think of myself as only a diagnosis or list of diagnosis.  Yes, I'm and EDSer, with fibro, POTS, epilepsy, bipolar...and a shitload of other stuff, but that isn't who I am.  When I say "I am an EDSer," I don't mean "I am EDS," I mean "I am part of the EDS community who calls themselves EDSers."  I learned long ago how you word things matters.  For instance, I am not bipolar, but I have bipolar.  I am a woman with fibromyalgia, but I'm also a woman with a great sense of humor, who wants to be a mommy, who likes to crochet, and who loves cats, dogs, and zebras.

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