Award Season

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While I was down and out for those few weeks, dealing with the world spinning out of control and increased pain and flu symptoms ~ and the sadness that comes along with it all ~ I was nominated for FOUR awards by my fellow bloggers. The stars aligned in those days to remind me that I have value and to keep fighting. I also had so many comments from all of you (to which I still haven’t replied ~ I’m on the cusp, gaining ground, but making mistakes with pacing and trying not to slip backwards). Please PLEASE know what it meant to me to read your hang-in-theres and stay-strongs and you-are-not-alones. I can’t even imagine the level of loneliness and isolation some of you experienced having this disease before the internet. You are warriors!

Instead of nominating 35 other blogs (the total for all 4 awards), I am going to make this easy on myself and just tell you about 10 blogs that I think you should follow because they are wonderful. Some of them may be written by severely ill people and I wouldn’t expect them to respond. I realise this may be dousing the exponential process that is at the heart of these awards, but I think this is the most sincere way for me to respond without expending too much precious energy. All the bloggers I follow are chronically ill and I like the idea of saying, “Your writing is so amazing, I want everyone to read it. Pay it forward only if you have the energy and want to.”

So, with no further ado, here are my 10 nominees for the Elizabeth Milo Says You Should Subscribe To These Blogs award (especially if you have ME/CFS and/or dysautonomia):

It was hard not to repeat some of the blogs I nominated a year ago and I wanted to especially mention Dreams at Stake, Emotional Umbrella and No Poster Girl ~ these are three ladies that I would love to sit with around a dinner table and talk into the wee hours.

I want to thank Jess at My Journey Thru ME and Marie at CurranKentucky for nominating me for the Liebster Award and for the kind words they said about my blog on their posts ~ I’m very flattered!

Jess lives in London with her husband (boyfriend?) and had to leave her job as a solicitor after coming down with ME almost 3 years ago. Her blog is inspiring, informative and upbeat. She is currently experiencing a bit of energy revival and I can’t wait to see what the future holds for her.

Marie lives with her husband in Galway, Ireland (one of my favourite places on the planet). ME came into her life about a year and a half ago and, although she used to work, travel, train horses, and run marathons, she has kept a patient, yet fighting spirit through her illness. She also found poetry, which she writes in almost every post ~ one of the many reasons to follow her blog.

Donna at yadadarcyyada nominated me for the Imagine Award. Me? Creative? Imagine! What a compliment. Donna has fibromyalgia, but that isn’t what her blog is about. What isn’t her blog about? Politics, books, movies, TV shows, wonderful rants and interesting images. It is never laborious and always surprising. She has about 10 times the number of followers I do, if that tells you anything.

Jenn at My Fibrotastic Life nominated me for the “I Am Part Of The WordPress Family” award, which I’d never heard of, but the sentiment is wonderful and I truly appreciate the shout out. Jenn has fibromyalgia, but blogs about so much more. She has an Arts and Crafts Gallery, she has an online store to sell her creations, and her blog is upbeat with amusing photos and creative cartoons (she is, after all, the inventor of the Imagine Award). But don’t be fooled, she is also wonderfully honest about the evils of her illness.

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Hope for a great sea-change

One of the things I never realized about chronic illness is that it is easier to drive than it is to take a shower. If you see someone driving their car to an appointment, you might think they’re doing okay, but that person may have needed help to wash their hair that morning. And, by “morning”, I mean afternoon because it probably took a number of hours to get from waking to bathing.

I can drive myself to nearby appointments and I can talk for the whole time I’m there – half an hour sitting up with a doctor, an hour lying down with the physical therapist – but, if someone witnessed this, would they understand that I couldn’t write a blog post that day, I had to put on clothes in increments over the course of an hour, I had to rest in a dark, silent room immediately before and after the appointment, and, if I had slept poorly, I would have canceled?

My husband has been washing my hair lately. I sit on my seat and he leans awkwardly into the shower while I rest my forearms on my knees and hang my head. He also helps me dry my hair. I sit on the toilet in much the same position as I did in the shower and he stands above me with the hair dryer.

My sister comes over to help me with laundry. It’s been a long time since I’ve expended the energy needed to fold or hang clothes, so there are wrinkled piles of clean, dirty and not-clean-but-not-dirty-enough-to-be-washed items in various rooms. I never thought my husband would be scrubbing my scalp while I sit naked and motionless or my sister would be sorting my underwear while I am supine, watching.

It seems like a new low, especially in light of the fact that I’ve been housebound for a year, I’m walking under 1000 steps a day and it takes about 15 minutes of activity to wear me out. But I don’t think it is a low. I feel hopeful; overall I may feel healthier than a year ago. I’m more debilitated now, but less ILL. More chronic, less flailing, flaring, uncontrollable. A year ago, I was freezing all the time during the day and drenched in night sweats whenever I slept. I was in constant pain and felt fluish every day. I was still going to the dog park and grocery shopping, but I was scared and overwhelmed. Maybe most of the improvements have been mental– now, when the viral symptoms descend, I don’t panic. I understand that this could be lifelong and any progress will always be at a snail’s pace. I understand there may not be progress at all, it may only get worse. I know now there will be spans of no pain and I just need to take one day at a time. In fact, every single night when I go to bed, I am excited at the prospect of another chance in the morning– at the knowledge that a new day may bring a better day.

My husband says, it was a long road down, so it’ll probably be at least as long back up. I try to relax into the ride, do all I can to unburden my organs and facilitate healing. When my inner workaholic and constant student starts to writhe inside this straight jacket, I soothe her: You are working. You are writing, reading, learning about yourself and opening your eyes to suffering. I remind myself that I don’t have to talk to people that annoy me, drive during rush hour, meet deadlines or bow to bosses. When my night owl howls, I tell it nothing fun happens between 9pm and 2am. You’re not missing anything, go to sleep. I try to believe it. I remind myself that I never have to hear an alarm clock. I ease into bed with a solid routine and, when I wake, I lounge for hours. This is healthy, don’t resent it. When cabin fever and loneliness threaten to make my mind come apart at the seams, I pretend I am monastic. I am on a retreat. I am cleansing, enjoying solace. This is a temporary stillness. It is needed. Revel in it. I get to enjoy the garden and the sun. I get to spend every day with my dogs, even if it is lying flat on my back. I promise myself: The world will be there when your body is able to meet it again.

Maybe this low is where the slide stops and it’s all uphill from here. Listen carefully: “Believe in miracle and cures and healing wells.”

So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.

Seamus Heaney,
The Cure at Troy
R.I.P.

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.

Title Credit

A few things I want to note:

First off, the photos from my garden are my effort to “notice the good things”, as my therapist encourages me to do (since I am all-consumed with the badness of ME). So, my blog might be:

…moan…bitch…whinge…
[garden-of-good-things intermission]
…whine…cry…wail…

My husband is a landscaper and has crafted an oasis here in the city. One silver lining from this illness: I have literally stopped to smell the roses (or lilies). In the past, I never took much notice of what he planted where or when. I was too busy working. Who has time to look at plants when there are P&Ls to pour through? Now, every time I take a gander through our garden, something new is happening. Since I am housebound, each new bloom or bud is breaking news. The lives of bugs and birds are my realty shows.

Also, yesterday I realised that there are ads on some of my posts (gasp!). This is WordPress’s way of paying their bills and is not my choice. I can have a “no-ad blog“, but it costs $30/year and I really don’t want to spend the money. However, please let me know if it is really bothersome to your reader experience and I will reconsider that decision. 🙂

The ME/CFS Blog Community

Honestly, when I started this blog, I’d never read a blog before. I knew what they were, but I had never looked one up or come across one. I didn’t have time to check my personal email account or read my magazine subscriptions, let alone peruse blogs for fun.

It never occurred to me that there would be so many people with ME/CFS writing blogs. That never crossed my mind. I didn’t get sick and start looking for personal stories of survival on blogs. I got sick and started researching the CDC and WHO and MedScape and the Mayo Clinic. As I continued to write, I would get a comment here and there and think, “Wow, there’s someone else writing a blog about this very same hell in Australia.” It’s like Twitter ~ if you’re not part of that world (and I’m not), you just don’t really get it. I’m discovering how vast this community is and it amazes me. There are so many of us, housebound, bedbound, reaching out in one of the only ways we can. How is it that most people don’t know all about this disease??

I started writing because I wanted to track my days on low-dose naltrexone. I quickly realised what a relief it was to answer friends’ and family members’ questions with my posts rather than trying to keep up with emails or tackle phone calls, which exhausted me even when I wasn’t sick. Then this blog became therapeutic and it became invaluable for me to witness my own trajectory. But, I am gobsmacked at how many blogs I come across that write the exact same things that I have: How my illness began. What has helped. What I wish I had known. How the medical community has failed me. We may start to tell our stories in isolation, but, the more you look, the more you realise that this community is conducting its own researching, being our own doctors. We are all out here, figuring it out ourselves, informing one another through forums and websites and blogs. You know those drug print-outs that you get from the pharmacy? We do that for each other: You might want to try this drug. Start at this dose. Look for these side effects. Try these two things in combination. Try taking this one at night. Here are the Safe Doctors… Hundreds of us, thousands. And there are millions more out there not connected to these resources, suffering in silence.

What keeps nagging at me is, if someone gathered all these blog sites together and sent them all to someone and that someone spent a week reading these uncannily similar stories, that they would drop everything and make something happen. I know that’s a lot of  “someone”s and “something”s. I don’t really know what I mean. Maybe the president drops everything and makes ME/CFS a huge research priority. Maybe an amazing doctor with lots of connections and endless time who lives very close to me decides to stop everything she is doing and focus all her efforts on mastering this disease. Maybe Bill Gates or somebody else very rich puts together an elite superhero team of scientific minds that he pays forever to do nothing but figure out a cure. Or maybe the money goes towards helping every patient afford their mortgage, food, home care, medicine… If somebody powerful/influential/rich read all of our stories, I am sure they would stop doing whatever they do in life and dedicate all their resources to doing something to help us. Right?

On the right-hand side of her site, No Poster Girl has a Blogroll: a list of ME/CFS blogs. I haven’t read any of them and I thought I’d read a lot.