Did you read those New York Times articles? I picked them for a reason. The Lyme disease one is obvious ~ whether or not we have a positive test for Lyme disease, we all seem to be suffering similar symptoms and I, for one, will always wonder if I have Lyme’s even though my test was negative. There is a treatment for Lyme disease (although it doesn’t always work and it has major risks) and that makes it an somewhat attractive answer. We all spend so much time hoping for a positive test to something that is treatable. Yes! I have anemia! Yes, I have sleep apnea! Anything that can be treated and might help…
Which brings me to the next article. One of the scary side effects of long-term antibiotics (used in the treatment of Lyme disease among other conditions) is dangerous gut dysbiosis and potentially fatal infection by clostridium difficile (C. diff). Stool transplant (fecal microbiota transplantation) seems to me to be a no-brainer in these situations. I heard an NPR show that said it’s not routinely used and not well known because, among other reasons, it doesn’t involve big pharma. You need a donor and a blender and what drug companies make money off that? I have consistently shown a lack of good bacteria in stool samples and high levels of certain bad bacteria. The Good Doctor has worked tirelessly to help turn this around (probiotics, hateful diet, and supplements such as the latest: glutamine) to no avail. The first thing she told me in our first appointment was that most of the immune system is in the gut and this will be an important point of focus. That was the first time I had ever heard that. Oh, what I didn’t know last year! Recently, I have read a lot of articles on the gut microbiome and ME/CFS, too: all of these on Health Rising, Borody et al study, Sanjay Shukla study, Cheney article… It has occurred to me that it’s only a matter of time before I beg for a fecal transplant.
Finally, meditation. I wrote about Meditation as Medication a while ago and I still practice every single day. And it is still probably the number one thing I’ve done to help my situation. My brain is like a wild, bucking stallion, with crazed eyes and heaving lungs, rearing back against the ropes, throwing itself against the walls of its enclosure. It stampedes around with no concern for its own well being… catastrophic thinking, suffocating fear, desperate desire… It keeps me awake at night with dreams of health and happiness that turn into nightmares as I fall into fitful sleep. My brain has taken up the activity that my body lost ~ and it feels just as exhausting. Meditation reins in my thinking~ calms and focuses it. There is hope and confidence in the stillness beneath the rodeo and the thing that has been most revolutionary for me is the reminder that I am TINY ~ I am a speck in this universe and a nanosecond in time ~ but I am also HUGE because I am connected to all energy and all life. I’m insignificant in the grand scheme of things, but it’s the grand scheme that eases suffering. I’m not alone and, in that interconnectedness, there is significance. I’m one of billions that suffer and we can all hold each other up with mutual compassion.
Here are some of my favourite free meditations:
- Yoga Nidra Podcasts (I’m adding these after a tip from Jess at My Journey Thru ME. Some are abrasive to anyone and some are annoying just for someone with my idiosyncrasies (for example, imagining hot/cold polarities when I spend my life trying to maintain a stable temperature is in no way comfortable)): Here is the first one that popped up on my search and I really liked it. I LOVE the chakra element in this one ~ it would be great to do while lying on grass ~ especially if you’re into grounding/earthing.
- Anything Jon Kabat-Zinn (here‘s one on YouTube. There are some podcast episodes of his meditations, too)
- Jonathan Faust (I like his podcast, which has half hour meditations and helpful longer talks on things like fear and pain)
- Tara Brach (she also does these longer talks)
- Audio Dharma (a lot of these are difficult for me, but there are some gems)
- Meditation Oasis podcast (dependably soothing)
- Excel at Life (they have apps, too)
- The Meditation Podcast (uses binaural beats, so use headphones)
I loved the articles you posted and over the last 19 months have become ever increasingly cynical as to the workings of the phara sector along with realising its up to me to help me. That said, diet and meditation are two big changes I have made, are they working? I dont know but I know im not willing to change them! I love meditation and like you my brain boards a crazy midnight train and wakes me at the most annoying early hours in the morning screaming “this is fun, lets wake up and write some poems, whoohooo” while my body is screaming “what the hell, go back to sleep you crazy thing”. Its cruel. Meditation helps me reign it all in and try and claw back some control over the ticking bomb in my head. This week has seen a lot of meditation and a lot of craziness in retaliation for the wedding experience! I cant remember what its like to have a “normal” nights sleep, hopefully someday we will see them again.
Oh, I’m so happy someone is interested in some of the articles I post! I really appreciated your wedding post. Congrats to your sister and to your valiant effort. I loved being able to read the blow-by-blow and knew I would have been in almost the exact same situation.
I, too, write poetry. I bet you have written 100 poems in your head while meditating or trying to sleep that were really wonderful, but never made it to the page. I’m always trying to remember that beautiful thing I wrote …but it disappears as soon as I open my eyes. 🙂
I have a trick for you re the poetry… a notebook and pen on the bedside locker.. thats what i do and it serves to help me remember them (often im up for hours and suddenly think, mmm i think i wrote a poem last night, ill open the book and there is one or maybe three!) and also helps me get back to sleep, once they are thrown on paper at least my brain will shut up and i can get down to important business of sleeping!!!!
[…] 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 would guess lyme for you. I tested negative at my doctor’s office but positive through Igenex labs.
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