General Update

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.
Zeo graph: These lines should be SHORT when I'm sleeping. The "W" at the top means "Wake".

Zeo graph: These lines should be SHORT when I’m sleeping. The “W” at the top means “Wake”.

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:

Proper sleep waves.

Proper sleep waves.

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 Probiotic
2x tsp fiber
100mg Colace
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)
100mg CoQ10
400mg Magnesium glycinate
200mcg Selenium
400mg Riboflavin/B2
5,000mcg Biotin
15mg Zinc sometimes
500mg Vitamin C sometimes

Valerian sometimes
1mg Melatonin
100mg Phosphatidylserine
Tart cherry juice concentrate

5ml Zyrtec
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.

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8 thoughts on “General Update

  1. Curiosity says:

    I have that too with the electronics before bed! Totally underestimated how much of an impact that had.

    Liked by 1 person

    • E. Milo says:

      Oh, it’s brutal. I didn’t get it all. Hypnagogia, my ass ~ I’m just burning my eyeballs with the bright blue light held two inches from my face!

      Like

  2. Tanya Marlow says:

    I’ve just discovered your blog. I have M.E. too, so can relate to the horrible frustrating feeling of thinking you were improving and then finding yourself relapsing.

    I was really moved by your account of lying in bed, not sure if you were able to talk or not. That is REALLY scary and horrible. Sending you so much love. Xx

    Liked by 1 person

    • E. Milo says:

      Hi Tanya! So happy you found my blog. I’m not sure how to get my readership up ~ I started this mainly to keep my family updated on my progress because individual email conversations were too burdensome.

      Thanks for the support ~ it means so much, which, unfortunately, you know all too well. Hope you’re having an okay week.

      Like

  3. Vicky says:

    I also noticed the same issue with computers (tablet/phone/laptop), but watching t.v. doesn’t seem to affect me this way. I try to have at least 1 or 2 days a week with no computer use and to not use computerised devices in the evening after a certain time. It definitely makes a big difference to me.

    Liked by 1 person

  4. Electronic before bed are too stimulating, but laying in bed with insomnia despite having all that away from you is also bad. I do play music sometimes that helps, and I also have an app on my phone that is rain sounds, ocean wave sounds..and other misc nature sounds. That is relaxing to fall asleep to. another thing I do that helps is to read a book, it makes my eyes so fatigued that i want to close them and fall asleep…and reading a book is different than reading on the internet. I have a kindle and that works as well as a book..I hate holding books, and turning pages, my arms ache from it. Melatonin helps sometimes too. I hate insomnia. and it happens EVERY night, and I never understand it, because all day long I’m fighting to stay awake, and all night I want to sleep and can’t. My thoughts on that are..I think my eyes are less fatigued in the night/dark so the rest of me functions better and is awake. secondly, I’e spent all day fighting to stay awake that now i’m trying to undo that and my body is already in that mode to stay awake so it’s hard to just switch to giving in. Thirdly, I think way too much at night, my brain is awake, it’s when I am most alert and can do what I couldn’t do all day.. I can suddenly figure out bills, get online and pay bills, write responses to emails, write in my online journal on (dailystrenghth.org I love that support site! The fibro group is very active in writing and responding to posts and commenting on journals ifyou have them available for friends to read.) I wanted to get a blog going on here, just haen’t really. I should just copy/paste what I write in my dailystrength journals I guess. and now I am tootally off track and forgot what I was talking about and have to go back and re-read what I was writing about….. Oh reasons for insomnia thoughts: also by the evening I’ve got more medications in me and I have had my body moving a little so it’s not as stiff, so I can actually move more at night, even though sore..its different than the morning pain and stiffness and just brain not working to tell body parts to move.. the heavy, dead limbs.. hate that. Night is also when I worry and stress the most…about the next day. And finally I don’t want to go to sleep because I don’t wan tto wake up and do th is all over again ! sorry that was a long winded post. I am ready to fall asleep …if I can sleep. I am sleepy but you know sometimes that’s just not enough. Goodnight. and I hope you have a better day “good day” . Just keep in mind, you are not alone. We can all share our thoughts and feelings with each other and tips on how to do things differently to make our everyday things a little easier to do…like showers..get a shower chair/stool. Don’t make morning doctor appointments, only afternoon. Give yourself 2-3 hours in the morning to wake up and slowly get your body moving. The heart racing in the morning and sweating from a standing in the shower is a vaso vagal reaction. I now the exhaustion and stuff is from ME/CFS but vaso vagal syncope and the heart racing is a SYMPTOM of CFS, and it’s one of the most debilitating ones! Your autonomic nervous system isn’t working properly.. dysautonomia is also part of CFS/ME and vaso vagal syncope is party of dysautonomia Even if you haven’t formerly been diagnosed with it (not sure if you have or not).. you have it. If you have CFS/ME you have it most likely, especially since you have that vaso vagal response like I do. A cardiolgosti can treat you for that with medication if you choose. ProAmatine or Florinef .. basically salt pills.. take one when you wake up in the morning and before your shower it will help a little an d if you dont want to do that.. First thing in the morning after waking up drink a glass of water. Keep a bottle of water by your bed, so you don’t even have to get out of bed until you drink it…it helps a lot, well, not a cure, but it helps better than not doing it.

    Liked by 1 person

  5. […] usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement […]

    Like

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