Today

The sun has come out and it puts me in a pretty good mood. Luckily, I have another reason to be in a good mood as well. The past two days I have been virtually pain free compared to the past five years… today is off to a good start as well, so I’m willing to consider it three days in a row. I still have some minor aches but I will take those over how I typically feel. The only thing really plaguing me now is some severe fatigue in the mornings. I feel more energy during the day than I am used to, but in the mornings, it actually seems to have gotten worse somehow. Also, I was pretty fatigued all through the weekend last week. My boyfriend reminded me of the battle going on inside my body; no wonder I am so tired. The antiparasitic regimen I am on may be taking its toll on me since those drugs are pretty harsh, plus the bugs are going to fight back as hard as they can. Of course this is exhausting, especially with the other stuff going on. I kind of wish I could take time off work for the length of this antiparasitic regimen but that’s just not possible.

At any rate, the past few days have been pretty okay except for the mornings. Not sure what to do about that, but happy to be feeling better the past few days anyway! I think I have a few weeks left on my antiparasitics and then hopefully they’ll be gone for good, this being the third attempt to get rid of them. Wish me luck 🙂 Hope you are all doing well!

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Sleep…how can something so essential be so elusive?

I have had trouble with sleep for most of my life, at least as far back to my teenage years. Of course everyone thought it was because I was a teenager that I wouldn’t feel rested until I slept into the afternoon, and when I felt so exhausted every school day, I thought I just wasn’t a morning person. Later in life, this led to drinking caffeine daily just to be able to focus on my work and even got so bad that I was nodding off at my desk sometime before my car accident, probably when I was 23 or 24.

I had insurance for the first time in a long time, so I went to see my doctor to complain of this fatigue. She insisted it was something I could change in my lifestyle, that perhaps I was going out late at night and partying or drinking caffeine too late in the day. I left feeling very frustrated, but I was insured by Kaiser then and couldn’t see any doctor outside of there. I found a website for a sleep center that looked promising, but had to just keep it in the back of my mind until I had insurance that would pay for a visit there.

Finally, when I was 27, I had a job with insurance that would allow me to see the doctor at the sleep center. I certainly hadn’t forgotten about it. This sleep center did not require a referral from a general practitioner so I was free to make an appointment for a sleep study.

When I met with the doctor, I was surprised at how laid back he was, and how he asked me some questions and sat back and said, “I think you know what you have, you just need someone to say it.” so he asked, “What do you think it is, I’ll tell you if I think you’re right.” I said “It’s probably sleep apnea.”

“Bingo.”

I was set up for a sleep study to verify our assumption and it turned out I have fairly severe sleep apnea. I never would have known that apparently I do snore, snoring can be silent, but apparently snoring was picked up in my sleep study. I’m not overweight nor are my tonsils too large. But here I am with this diagnosis. I went through a second sleep study for titration, to figure out what settings to apply to my CPAP machine. I went home with my machine and all was well.

For about a month, I felt refreshed every morning, but there was a lot of pain in my chest and stomach. I was swallowing air. My body just couldn’t get used to the air forcing its way into my body at night. I was switched to an APAP in order to slow down the air swallowing. Eventually I ended up in another sleep study, because after that initial month, my fatigue came back full force. My doctor wanted to rule out any other sleep disorder. Also, I was still swallowing air. I ended up on an Auto BiPap, probably one of the most expensive machines out there, but the air swallowing problem went away with this final machine change.

I’d also had problems finding a mask that would work for my rather small face and features. Doesn’t seem there is anything that quite works right without a lot of air leakage or on the other end of the spectrum, things tight enough to not leak would put pressure on my face and head and create a lot of damage in some cases. Currently I am using a mask that rubs the inside of my nostrils raw but it doesn’t leak so I just try to deal with it. I’ve been through probably ten masks.

I’m now 29 and I’m still exhausted on a daily basis. I know I feel even worse (which some days, doesn’t seem possible) if I don’t use my Auto BiPap machine but I am anxious to feel better.

When we ran out of ideas/options, I was then referred to the chronic fatigue/fibromyalgia doctor I am seeing now.

I am happy to report that after only a few days on all my new medications and supplements (five new medications, four new supplements), I have now had two nights of actual, deep, uninterrupted sleep. This is mind blowing to me, because I was used to a life of tossing and turning throughout the night. I thought this was NORMAL for many, many years! I could not wrap my mind around the fact that healthy sleep involves pretty much being dead to the world all night. Who knew? Certainly not me.

So, while two nights of uninterrupted (except by the incessant mewing of the cat this morning) sleep is a good sign I am moving in the right direction, I am still waking up feeling tired. I hope this goes away with more time. I am hopeful again. It’s a nice feeling.