What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5’ phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum (for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.


Meditation as Medication

Meditation, from the day I started practicing, has been the single best thing for my well-being this year. It’s my charging station, my power cord. E., my best friend, said I was like a mobile phone with a crappy battery that needed to be charged all the time. That is exactly it: I’m okay… I’m okay… I’m fading… I’m gone. For months, my meditations were responses to the “gone” stage ~ when I crashed, they were necessary to recharge me. Now, they are built-in to each day ~ they are necessities to stop me from getting to the point that I’m gone. I meditate twice, if not three times, a day. This means going to my little meditation room (originally created to be my yoga room, which I hope to be able to do again one day), lying on my mat (a small folding futon), putting on my eye shades and listening to a CD, YouTube or podcast. I can do my own meditation silently in my head, but I much prefer to listen to someone guiding me. I find it so calming ~ that is, if I can find the right voice. There are some WACKOS on YouTube.

The downside of this is, of course, the cost. The best meditations I have found were on Amazon and, most of the time, they seem to be about $20 for an hour of talking. Meditation Oasis podcasts are free, but they’re all similar and quite short. There is no shortage of 5 to 20 minute meditations out there. Ideally, I’d like to find hour-long, good quality meditations ~ guided imagery or body scans or breath work or hypnosis practices. Lots of the time, I’m hoping to fall asleep. I’ll listen for half an hour and then doze off, but I always wake up when the meditation ends, so longer is better for me. The other downside is repetition ~ I have listened to my five CDs hundreds of times. When you know a meditation by heart, you tend not to pay attention as closely as you once did.

Interestingly, though, each time I do guided imagery, something new always bubbles up in my brain. And it’s always from my past. My therapist says I am a future thinker: the what if thoughts. What if my husband gets sick? What if I can never work again? What if something happens to a loved one abroad and I need to get on a plane? What if I have an allergic reaction to Lyrica? What if I lose health insurance? What if there’s an earthquake? What if I get the flu? What if I can’t get disability? What if we can’t pay our mortgage? What if I’m like this forever? But, I don’t think about/ talk about/ dwell on my past. However, that doesn’t stop it from playing out like little movies in my meditations and I sometimes find myself lying peacefully with tears running from behind my eye shade into my ears.

There is one guided imagery phone app that I listen to which has me walk down ten steps to a landing with two doors. When I open one of the doors, there is always something new behind it. Last week, I opened the door onto a field in Tiglin, Ireland where I went with E. when we were kids. How old were we? 14? 15? I can smell the air and see the trees and remember the feeling of freedom and excitement. It was before health problems and before the real insecurities of teenage years. We were out of the city, alone, responsible. We were giddy, we were growing up.
Another day, I opened the door into a cabin where I stayed with my two brothers. It was a skiing trip, I was a little older. We drank some beers and blared Janis Joplin and sang along to every song. My brother, who is seven years older, said, “I didn’t know you knew Janis” and I felt jubilant ~ as if I was finally an accepted member of the cool kids instead of the annoying, bratty baby sister. I think they laughed at one of my jokes; I remember pure joy.
Another day, the door opened on a stream. I ran down a path and jumped from rock to rock and, when I saw Dash, I realised I was at the creek next to my Dad’s old house. Dash was our dog from when I was five to the age of twenty. We ran along that creek all the time. Dash didn’t have to be on a leash, he would follow me up and down the rocks and, when I sat down in the sun, he would, too. My constant companion, my protector. A few weeks ago, Dash would have turned 238 ~ in dog years.

Whenever those meditations tell me to imagine a time when I felt happy or go to a room where I feel safe and secure, surrounded by those I love, there are always dogs. My imagined room has all the dogs from my whole life, protecting me, playing with me, making me laugh, making me forget all else. My gratitude today goes to Dash, Floppy, Toby, Joxer, Bowie, and Riley. And to mindfulness and meditation, which keep my battery charged and keep me (mostly) in the here and now.