The beginning of the end came so abruptly!

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I'm a 57 yr old RN, but after I got the flu on 12-24-09, I descended into living hell.I became homebound in a bed to recliner existence, crawling at times- too weak to walk. My legs felt like tree trunks, too heavy to lift & my arms were heavy too, but they got better after eight months. My legs took much longer & when I'm flaring badly the leg problems reoccur. I felt like I had Parkinson's, after standing it took a minute or 2 before I could start my first shuffling steps! I was tortured by being unable to stay asleep in spite of being completely exhausted for 2 years, then I could finally stay asleep 8 to 12 hours, but my days & nights were permanently reversed! I was in severe pain with aching from my bones outward with my legs hurting the most.For the first 2 years daily,I was close to suicide because the pain was so extremely, bad that I just wanted out of my body. I'd always been so tough, giving birth to 3 children with no drugs, racing mountain bikes, snow skiing, scuba diving, kayaking, weightlifting, working full-time all my life & riding a road bike 200 miles a week for 10 years when I got sick! The futility of living in so much pain with no hope of getting better lead to comments from the doctor like "catastrophizing", but they had no idea how strong I was, just being willing to wake up each day & remain alive! I was finally treated with a 12.5mg Fentanyl  patch & morphine sulfate 15 mg BID for breakthrough pain & got some relief that I didn't know was possible! I asked them why they hadn't helped me sooner? I'm plagued with severe SOB & just recently got O2 at 2LPM PRN, brain fog, photophobia, temp regulation instability, sweats, sore, red throat, nausea, appetite changes only wanting vegetables & fruits, unable to eat meat 2 yrs, but can now eat it on rare occasions,new headaches so severe I have to go to the ER for pain relief & treatment of the unrelenting N/V & the list goes on since day one. Recently, after four years of being sick I added dysautonomia & POTS to the list after doing my own the poor man's  postural orthostatic testing.  I've probably had it since the beginning with the chest pain and palpitations, but I finally went to the hospital in Wildomar, CA in May 2015, and spent 6 days there for studies.  It concluded with them saying they didn't know anything about cardiac problems originating from the central nervous system so I should go to Mayo Clinic or Vanderbuilt University where they know more about postural orthostatic tachycardia syndrome. I didn't go, but I read about the treatments on their websites & went to my primary doctor & educated her to possible treatments. She refused to give me NS IV because of potential infection with a picc line, but at least I got put on fludrocortisone & propanolol to keep my BP & HR down. I felt better for about 2-3 wks & could get out of the chair for several hours a day so it felt like a miracle, but then I slowly disintegrated back into the chair again.  Fortunately she was willing to try IV therapy and was amazed as she watched my blood pressure become completely normal as I stood up after infusing 1 L of normal saline.  She did put a pic line in and I have had very few problems with tolerating standing up over the past two years  since then. I now have a permanent central line that goes in at my left upper chest.

I lived in beautiful, Carlsbad, CA, but after four years of being sick I had to rent out my home there & move to a less expensive rental place in Murrieta, CA For a year.  Since then I moved to the Portland, Oregon area where my daughter and her family liive because  finally came to the point where I admitted to myself that I cannot care for myself anymore! After eight years of being this sick I admitted that I'm probably not going to get better! I used to get rare, occasional "good" days so I could at least get groceries sometimes, but I crashed after the move to Murrieta into a bed-bound state unable to even sit up to eat. Now, after POTS treatment I can sit in a recliner. I'd never heard of ME before I got it & thought I was dying from something for the entire first year. I've wasted over $40,000 in co-pays in the Kaiser Medicare HMO system thus far ruling out diseases, with no answers except, you have "CFS" & we can't help you! While desperately sick, I have to educate very doctor I see about ME.  During my first year of seeking care, I told one doctor I'd always been athletic, but now I couldn't get up & he told me to start exercising! I said, I'm here because I have always exercised & I can't get up! Which part of I can't get up don't you understand? All I do is read on my iPhone for every bit of research about ME I can find, hoping & praying to find the answer to getting better!