Thoughts, musings and sometimes ramblings in honor of my Granny Parton, who was bedridden most of her life. Ridiculed and dismissed, I believe she was a sufferer of POTS and Fibro. I have just been diagnosed with Hyperandrenergic POTS,secondary Fibromyalgia and Chronic Fatigue at Vanderbilt. This sub-type is genetic and usually passed mother to daughter. Dear Granny I say this for you: I TOLD YOU I WAS SICK! image source: Daniel Robbins. Follow me via your email address!
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Friday, March 8, 2013
Spring Forward...oh no not that!
Once upon a time, the thought of "springing forward" thrilled me to no end! Long spring days outside working in the flower beds and time to take an evening walk in the warm air. Not anymore. All it means now to me and everyone else I know that has FM/CFS is the dread of losing another hour of precious sleep. I have been in the bed every night for months by no later than 8pm. It usually takes me about 4-6 weeks to adjust to this simple hour of time loss. It's been a totally bi-polar week of weather in the mountains of east Tennessee. Snow flurries, wicked winds and today sunny skies and around 50 finally. Again, what seems like a minor issue to some is a like torture to us folks that are sensitive to weather changes and fluctuations. One of my best friends has had a tough week with her father experiencing a stroke but I am happy to say he is already excelling in re-hab and should be home soon. You can't keep a highland fellow down long... we are a stubborn and tenacious breed, so we give thanks for his healing. I have been slowly increasing my magnesium after a comment by a reader to this blog and think that it does help with my whole body relaxation before bed. I usually spend about one hour with the heating pad on my legs, back and neck before sleep and it seems to help. If you have FM/CFS and you think you have sleep apnea, please if at all possible, have a sleep study. Mine revealed that I only was getting a maximum of 90 seconds at a time of stage 4 (restorative sleep) during both nights I was tested. Apparently, this is a very common condition with FM. I received my CPAP in May of last year and it has changed my life. I was suffering from terrible nightmares, that I honestly think were caused by oxygen deprivation and being almost dead! On top of that, three years ago I started having sleep paralysis with night terrors. I had the horrifying feeling something was in the room and sometimes sitting on my chest. When it happens I feel like I am physically being pushed extremely hard into the mattress. I was so terrified and I would be screaming in my mind to wake up and move, but could not. It is a horrible experience. With the CPAP, the nightmares are less frequent and I go into a deeper sleep and have so many "normal dreams", which my doc said was good, because that showed I was spending more time in Delta sleep. Unfortunately, I am still experiencing the sleep paralysis. My sleep doctor just kinda "hhmmms" when I tell him about the feeling of something sitting on me. I know it sounds crazy, but to me it is happening. Since getting the CPAP in May, I have averaged 10 -11 hours of sleep a night. I still sleep lightly and can wake easy, except when the clock goes off, apparently that is the deepest sleep and dream state just before waking. He also told me if you have been sleep deprived for years, it can takes months or years to get "restorative sleep". Apparently, the new school of thought on sleep deprivation is that the body does indeed try to restore the depletion. I had tried a CPAP in 2003 and couldn't wear it because the face mask caused a rash and my ex said the noise disturbed his beauty sleep. The newer models you can barely hear and I have nasal pillows that work so well for me. I feel it is the most significant step I have taken in trying to regain some energy. When I go to see the doctor, I take the card from the unit and they pop it in the computer to see my sleep pattern. He is always like "wow, you are getting a lot of good sleep". Hopefully soon my body will feel like im restored, until then just call me Rip Van Winkle!