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.

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17 thoughts on “What I’m doing now that may or may not be making a difference.

  1. It looks like your mind is in tune with your body. Super congrats

    Liked by 1 person

  2. (silly laptop… I wasn’t done!). I’m loving your rhythm of listen, react, go with it!!! xxx … I rhythm I too follow and love! xx

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    • Marie, you’ve been quite inspirational in my trying to relax and roll with it. My obsessive, perfectionist, workaholic tendencies carried right over to my illness and I spent so long fastidiously structuring my “recovery schedule”… your being at peace with watching the world and living inside your energy helped me to relax the grip a bit, so thank you. ❤

      Like

  3. Christine says:

    That was such a helpful and detailed post! I’m so happy for you and the fact you’ve made such incredible progress.

    Liked by 1 person

    • Thank you for saying it was helpful! It was mainly for me to remember, but I wanted to put links in there because I remember how hungry I was for direction and not having a brain to research… even the smallest things like toothpaste or soap. When someone can point you in a direction, it becomes more manageable.

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  4. bertieandme says:

    I got my ability to comment sorted – now using Firefox!

    This is a great post which I’m sure other sufferers will find super helpful 🙂

    I have no idea how I managed to start to recover from ME either – I kind’ve did the polar opposite to you and stopped all my supplements and nearly all my drugs. But there *were* similarities:
    – I stopped worrying, particularly about not sleeping and about how sick I was.
    – I started juicing (and sprouting seeds), which at the time I didn’t realise reduced my histamine load.
    – I ate organically and had a very low ‘load’ diet in terms of processed foods.
    – I did meditation 3 times daily.
    – I did yoga breathing daily.
    – I stopped being hard on myself and just did whatever my body told me.
    – I spent (and still spend) the first 2 hours of the day in bed. Getting up quickly still decimates my day!
    – I stuck to a rigid rest/activity routine which was the same every day.

    If either of us hear of someone else who has made progress with ME we should compare notes to see if the similarities are the same!

    I sooooooo hope this improvement continues for you. Fingers, toes and everything else (well, except eyes cos I’m dizzy enough 😉 ) crossed for you. Jak x

    Liked by 1 person

    • I did a total washout of all supplements, vitamins and drugs for many months last year and nothing got better. It’s only this year that I started adding things back in because I was so ill over Christmas, there wasn’t much to lose. I hate to say it, but the uptick in functioning coincided with eliminating oats and nuts. I’m going to be reintroducing both soon, so we’ll see what happens.

      Very interesting that letting go of those worries and fears and listening to your body allowed you to heal. Maybe all this searching and treatment testing is for nought.

      Thank you for crossing everything for me (for us!). 🙂

      Like

      • bertieandme says:

        I think drugs/supplements were for me what oats & nuts are for you :-/ I’m not half as reactive to foods as I am to chemicals. Our immune systems are so personal that finding out what’s hurting us is a hard and unique battle. Well done on fighting yours with such courage and determination x

        Liked by 1 person

  5. Lindsay says:

    i’m so glad to hear you’ve seen some improvement! i think not beating ourselves up for our eating/sleeping/bathing habits for a day or two. we work hard at taking care of ourselves and should be allowed to take a day off 🙂

    Liked by 1 person

  6. I am really happy you are doing better! Yay! It’s so rewarding when all the work pays off and you see progress!
    I use the same detergent as you and I use 7th Gen. dish soap as well, although maybe I will try the one you posted, Planet. I might also try Planet detergent … a friend who has skin allergies likes it.
    I saw that tea article before and completely changed up my teas as well. Scary!
    What is thIs new probiotic that has histamine-reducing strains? I am DEFINITELY interested in trying that one.
    Did you ever try Topricin? Another good pain-relieving rub. It is homeopathic. I use it for my RSI and sometimes on my back.
    I love TENS too… not as good as a massage, but awesome nonetheless.
    Am also crossing my fingers, toes, etc. 🙂

    Liked by 1 person

    • Ok, sorry for the delay. Regarding probiotics, below is all my research into histamines and different strains. More asterisks = more sites agreeing (sorry, I don’t have references, it was for my own info). I finally settled on Custom Probiotics D-lactate-free blend. B. Infantis is very important and its other strains are not histamine producing. But, it’s very expensive.

      Histamine-degrading:
      – Bifidobacterium infantis****
      – Bifidobacterium longum***
      – B. Plantarum
      – Lactobacillus reuteri 
      – Lactobacillus plantarum **
      – L. Gasseri **
      – L. Rhamnosus *** (stopped bacteria clinging to gut) (one source says neutral)
      – L. Salivarius **
      – L. Sporogenes **
      – L. Sakei
      – Saccromysis boulardii *

      Neutral:
      – Lactobacillus plantarum
      – Strep. Thermophilus *

      Neutral (except for people with tyramine intolerence or medium-strong histamine intolerence):
      – Lactobacillus acidophilus
      – Lactobacillus Lactis
      – L. Helveticus (stopped bacteria clinging to gut)
      – Lactococcus Lactis

      Histamine-producing:
      – Lactobacillus casei**** (kombucha)
      – Lactobacillus Bulgaricus***
      – L. Reuteri *** (good? Says Yasmina)
      – L. Fermentum/ fermentii
      – L. Plantarum **
      – L. Delbruchi
      – L. Paracasei (good for leaky gut says Yasmina)
      – Lactococcus lactis **
      – Enterococcus faecialis **
      – Enterococcus faecium
      – E. Coli **

      Liked by 1 person

  7. Hayley-eszti says:

    Good to see you’ve found some things that seem to be helping you, I’ll definitely be taking some of your tips into consideration and hopefully practise!
    All the best, H-E

    Liked by 1 person

  8. […] to make this with regular supermarket teas. Then I read this scary article shared by Elizabeth of E.M. and M.E. (a great ME/CFIDS blog that’s also helpful for people doing the low-histamine Autoimmune […]

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  9. linda says:

    It can take a while to find the combination of healthy for us foods and supplements…

    I get a really buzzy brain from exposure to wireless or stray/dirty electricity on the phone line. Every once in a while some wires get crossed at the main telecom box somewhere and if I spend more than 5 minutes on the phone, my head will start buzzing with what seems like an increasingly angry swarm of bees the longer I stay on the phone. Not pleasant at all…

    Being around wireless devices does similar things, and also causes a real tension in my neck and shoulders, and pressure in my head. Plus tinnitus. That’s a classic symptom from high EMF/EMR exposure. I have a landline speakerphone to avoid the EMF’s in most earpieces, and wired internet.

    My air purifiers provide white noise for me, helping me sleep (and drowning out some of my tinnitus from the wiring here).

    Meditation and breathing exercises, and looking out the window or sitting outside when the air quality permits are really helpful for me.

    I miss having a camera… I would look for little things in my immediate vicinity to photograph… I noticed the variations of the clouds in the sky (through my windows) a lot more when I had the camera than I do since it broke!

    Being aware of some of the beauty around us is a nice way to take our minds off the way our bodies have changed…

    Thanks for describing what you find helpful.

    Liked by 1 person

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