I feel like it has been a while since I gave a proper update. This may be a bit disjointed as I hit the important points from the past few months.
- 19 months sick. 1 year unemployed. 9 months on elimination diet. 8 months housebound.
- The week before Easter, I had the best 4 days since becoming housebound. Starting April 1st, I went downhill and got no respite from the crash for over a month. Each day, I hoped for a new beginning. Each day felt as bad or worse than the day before. I was spending days in bed and, very quickly, my mood tanked. It is very hard to see the light at the end of the tunnel when you get no relief day after day. I am usually quite good at articulating what I’m feeling ~ what is worse, what would help ~ but, there was a point in late April, where I was lying alone in my room and all I could think was. “Help me.” I didn’t know who to call or what I would say. I didn’t know if I could speak ~ I had been crying for days and was at a point of hopelessness that made me mute. I managed to text E. who gave me a little pep talk and made me feel less alone. That’s all anyone can do. Things started to ease up the second week of May. I’m not back to my normal crappy baseline yet (no walking around the garden, no stretches), but my body feels a bit better and my brain feels like I’m a different person: As usual, as soon as I get some space from the symptoms, I bounce right back to someone who can talk and laugh and see a future.
- Which brings me to what caused that crash: I think I got so much worse because I stopped wearing the cpap. I really didn’t believe it was doing anything except annoying me. The mask was waking me at night, the necessity of washing all the cpap parts was exhausting, the tape over my mouth wasn’t doing my skin any favours… But, it finally dawned on me that I got worse about a week after I stopped using it. And then I started to feel better exactly one week after I started using it again. So, I’m a believer. I may be aware of the cpap mask waking me, but I am not aware of the apnea awakenings and those are the ones that are really affecting my health.
- Which brings me to my sleep: I am still having a rough time. I intend on writing a post detailing all the information and tips I have gleaned from various sources on how to improve sleep without prescription drugs, so stay tuned for that. For now, suffice it to say I have tried EVERYTHING. As I have mentioned before, I am addicted to reading the New York Times on my phone in bed before I go to sleep ~ but I wear amber-lensed, blue light-blocking glasses after the sun goes down so I am supposedly protected from the way the screen affects my brain. Well, my birthday night, instead of reading the NY Times, I spent far too long looking at Facebook and answering all the wonderful happy birthday posts. I forgot to wear my amber glasses and wound up staying awake until 6am, tossing and turning.
This is very unusual for me ~ I always fall asleep right away, it’s the waking up throughout the night that is my problem. So, for the last two nights, I made a strict rule of no phone or computer screen of any kind after 8pm and no tv after 9:30pm. My sleep was instantly better. Look at last night:
So, like the cpap, I believe I really underestimated what the phone or ipad light does to my brain. The room is black, but when I close my eyes I see lights, colours, moving lines, exploding stars. Basically, if I open my eyes it is darker than if I close my eyes. Someone on Phoenix Rising surmised that I was experiencing hypnagogia, stuck between wake and sleep. Either that or staring at my phone really, REALLY messes with my brain.
- Which brings me to the supplements I am currently taking for sleep (and all the others, too, plus prescriptions). Here is my daily regimen:
2x tsp fiber
Chinese Herbs (Lightning Pearls, currently 3/day)
2,000mg Acetyl L carnitine (1,000mg 2/day)
1,200mg Alpha Lipoic Acid (400mg 3/day)
4,000mg Borage Oil (960mg GLA) (2,000mg 2/day)
10,000iu Vitamin A
4,000iu Vitamin D3
2,000mg Fish oil (1,000mg EPA, 50mg DHA)
Vitamin B-complex (Thorne #12)
400mg Magnesium glycinate
15mg Zinc sometimes
500mg Vitamin C sometimes
Tart cherry juice concentrate
Thyroid hormones (T3 and T4)
Pantanase nasal spray
Clindamycin topical lotion
Miralax as needed
Albuterol inhaler as needed
- The magnesium (for muscles), melatonin (for sleep onset), valerian (for relaxation), tart cherry juice (for pain and melatonin) and phosphatidylserine (to decrease nighttime cortisol) are specifically for sleep (I tried the Seriphos ~which is phosphorylated serine~ for a few weeks, but it seemed to keep me awake. The Good Doctor switched me to the new one). The other new additions to my protocol are biotin (the dermatologist told me to take this for the vertical ridges in my fingernails and hair loss) and the Chinese herbs. I stopped these for a week while I was feeling really terrible and thought I might be getting a cold, but it never materalised, so I started them again, increasing the dose much more slowly than I had originally.
- My diet is still the same (no gluten, grains, dairy, legumes, tomatoes, potatoes, or eggs), but I think I am going to add rice any day now… I’ve just been waiting until I have a more predictable day-to-day baseline so I don’t blame crippling muscle pain (which happened on the 17th for one day only from head to toe for no apparent reason) or the disappearance of sleep or an extreme headache on a rice cake.
I want to write about my recent doctor visits and some of the amazing presents I got for my birthday, but not today. Just know that I am flying high with all the love and generosity that was showered on me. I keep saying it, but one more time: I am one lucky lady. I have the most compassionate and caring family and friends imaginable. I thought I always knew that, but I am truly humbled today. NOTHING matters but loved ones! In the end, they’re all we have.