Posted 3/1/2008 1:01 AM (GMT -7)
For years and years and years I have battled to just simply stay awake for 8 hours straight. My husband thinks I'm a lazy ***, my MIL tells everyone how lazy I am, my kids are disgusted with me because I can't ever do anything with them... I've lost a job because I was caught dozing at my desk too many times. I was diagnosed with Polycythemia Vera last winter, with no treatments other than some blood letting. My bone marrow is "abnormal" with leukemic, but non-cancerous changes.
I wake up at 5am with my husband and get him off to work and if I don't force myself I can go to bed at 7:30 when he leaves and sleep until 3pm every single day. I then go back to bed w/him at 9pm and sleep straight through the night.
I have had batteries and batteries of tests, MRI, CAT scans, gallons of blood drawn, I take anti-depressants, (Cymbalta and Zyprexa), I am diabetic for 12 years, take insulin, I don't drink and the only thing that is really odd is that I'm a breath holder. My husband gets on my constantly to breathe. Noone can figure out why I do this, medical doctors, psychologists, psychiatrists etc... in fact they think that my PV may be caused by the lack of oxygen I give myself.
I had a sleep study that said I have no incidence of apnea, very light snoring only on my back and nothing more interesting than it takes me well over 5 hours to reach REM sleep. So the only diagnosis they can give me is Idiopatic (which means we don't know) Hypersomnulence (which means, you're really tired and we don't know why).
I've asked and asked about CFS, Lupus etc and they just look at me like I'm goofy. I am at my wits end with myself, my family is and I can't hold a job. I'm ill a LOT - I can get the flu 4 or 5 times a season, I just had a case of Pink Eye with an underlying sinus infection, I had 2 cases of bronchitis and one case of pneumonia this past year and I'm often extremely dizzy and nauseous and I vomit at the drop of a hat, I am constipated a lot with a "breaking of a dam" that ends up in 3 or 4 days of horrible diarrhea. I can't take supplements because they make me sick to my stomach, I have been unable to tolerate caffeine as I had an accidental overdose of it last fall, and everything that has a scent makes me ill, laundry, bathing, shopping has become torture because of scents in the stores. I've had a hysterectomy, I'm 42, not incredibly fit because I can just barely propel myself across the room.
I'm going nuts. I'm going to lose my marriage and kids I fear. I think I've told you everything there is to know. Is there anything that you can tell me? I'm only awake now because my husband is playing a game with my oldest son and the bedroom is being held hostage. I was asleep on the couch but woke up sweating and sick to my stomach.