Tag Archives: ME/CFS

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New in the garden this week.

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“At first, just one, a glossy purple clot
among others, red, green, hard as a knot.”

My husband scored a free wheelchair. We haven't used it yet. It's parked in the garden.

My husband scored a free wheelchair. We haven’t used it yet. It’s parked in the garden.

New pink bloom needing the wheelchair for support, like I do.

New pink bloom needing the wheelchair for support, like I do.

Magnolia: they really do only last a day or two.

Magnolia: they really do only last a day or two.

Slug tracks on the dog bed on the porch. Ew.

Slug tracks on the dog bed on the porch. Ew.

There was a huge spider web blocking the path to these new, tall, yellow flowers, so I had to take the photo from inside the house, through the window screen. I don't do spiders.

There was a huge spider web blocking the path to these new, tall, yellow flowers, so I had to take the photo from inside the house, through the window screen. I don’t do spiders.

Branches growing out of branches.

Branches growing out of branches.

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Hubby and sunset.

Hubby and sunset.

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True story: This was the balloon my sister got for my husband for his birthday in April. We kept it as it lost its buoyancy because it cheered me up. The other day, I was in the bathroom upstairs and this big yellow smile floated across the window. It was very surreal. An air current had somehow sent it out the open back door. I found it stalled on this branch, but couldn’t reach it. Then it floated through the garden as my dog chased it and… up, up and away. I was very happy to watch it soar away, but it was a bit melancholy, too.
*Sorry for littering*

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See the smiley balloon in the tree? 🙂

Bye bye, balloon!

Bye bye, balloon!

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Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

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I was normal last night!

I realise not everyone in the world is waiting with bated breath to find out how each of my nights goes, but I’m still going to share because I have nowhere else to SHOUT IT FROM THE ROOFTOPS! Here is my Zeo graph from last night:

12am to 8am

12am to 8am

That’s 8 hours of sleep with only 6 awakenings (which might as well be zero because I only remember being awake twice briefly from nightmares). I think it is the best graph I have ever had since starting to wear the Zeo 4 years ago. This was with NO DRUGS except Melatonin!! And, this morning, I feel better than I have in so long.

I want to remember this because it was odd: I didn’t sleep for 4 nights; I stopped my supplements except probiotics, fish oil and magnesium before bed; I walked fewer steps (as in, only 500-900 steps every day this week. I know, that’s horrifically sedentary); I took 1/2 of a Unisom and slept 8 hours and felt okay; I took 1/2 of a Unisom again, slept 8 hours and, yesterday, felt absolutely horrible. I kept saying, “Why do I feel so much worse today after I got two nights’ sleep??” It was the drug. Drugs just don’t agree with me. So, although I am very grateful to have Unisom, there is no way I can take it regularly.

Last night I dared to go to bed with no sleep aids except 1mg of Melatonin and, lo and behold, 8 hours of sleep with regular sleep cycles and a graph that looks like normal people’s graphs! I am convinced that, if I could sleep like that for 6 months, I wouldn’t be sick anymore. GRATITUDE GRATITUDE GRATITUDE!

Other things I want to remember that could have contributed to good sleep: I took an epsom salt bath and did very easy stretches; I put tiger balm on my neck before bed; I wore the Wisp cpap mask instead of the nasal pillows; I ate a larger dinner than usual (rice and veg), but earlier in the evening (5ish); I cuddled with my honey…

Also, I’m sure you want to see how I spent the first few hours today in bed, “gathering my strength”:

legs trapped in bed

leg warmers

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Cold War

I’m tempting fate talking about this, but it has been exactly two years since I have had bronchitis and/or a cold (they usually went together for me). I would say, in my old life, on average, I used to get a cold about once a year. I never paid much attention, though. As I’ve said before, it was never a big deal to get a cold and most restaurant employees would have to be on death’s door to miss a shift. I would joke that I might faint or go into anaphylactic shock or grow thyroid goiters, but I wouldn’t catch a cold.

Once I got sick with ME/CFS, I went through my medical records with a fine-toothed comb, hoping to find some clue to solve the mystery of my illness ~ that’s why I know the exact dates of my last cold. I had returned from Ireland a few weeks before (I think now, will that be the last time I am there?) and made an appointment with an allergist to ask about my eye and tongue swelling which had been going on during my visit home, plus a bad episode of pre-syncope. He had diagnosed me with autoimmune angioedema and urticaria by injecting my own plasma under my skin and watching a HUGE welt emerge. Great, I love being allergic to my own blood.

I then worked 11 days in a row and, as the weekend arrived, the bronchitis hit. It lasted two weeks and, although I finally went to the doctor, I didn’t take the antibiotics or steroids she gave me and I didn’t take any days off work. My father visited over the weekend that the infection was tapering off ~ we had a lovely time ~ and then I worked a few more weeks before flying to Virginia and getting sick with viral gastroenteritis that landed me in the ER, getting fluids. A few months later, the flu shot triggered this new life. No wonder that vaccination was the straw to break my immune system’s back! This is the message I want to get out: PAY ATTENTION TO YOUR BODY! HEED THE WARNINGS!

Anyway, there are very thin, very pale silver linings to my situation and I search for them daily, in an endless quest for gratitude and acceptance. This week I think, Two whole years without a cough or congestion or phlegm or wheezing! I try not to think, Yeah, but who cares when I’ve had endless flu for 21 of those months? I would prefer to be sick with bronchitis every day of the year than live with a disease that does not allow you TO EXPEND ENERGY. But I don’t go there. I know one day I will have to contend with a cold on top of ME and, until that day comes, I am going to be very, very grateful that my lungs and nasal cavities are clear.

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Homework Discussion: Lyme’s, Poop and Meditation.

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)