Seven years ago today, I hit the “publish” button on my very first blog post, “Start at the Beginning“. This, my dear readers, is my 273rd published post.

I had a super hard time deciding how to “celebrate” this momentous day. I was gonna share my seven most popular blog posts, but there isn’t an easy way for me to figure it out on WordPress. (If you want to read some of my earlier posts, scroll all the way down to the bottom of this post, find the “More ramblings / other posts you might want to read…” section, and click on the photos.)

For my first blogaversary in 2013, I did seven days of posts and a trivia contest with 25 prizes collected from various writers and artists. Of course, I’m waaaayyy too tired to even consider doing that now.

So here’s what you get instead: a few lists of seven things.

Seven things that have changed since I started this blog:

(besides my entire life)

I no longer live in Arkansas. When I started this blog, I lived in the Ozarks of Arkansas, where I’d been since 2006, thanks to a job transfer for hubs. In December 2012, we moved back to Georgia. Instead of amazing sunsets (like in the photo) and the Milky Way at night, I see, well, mostly my four walls, since I can’t leave my bed most days, much less my house.

This was my view in Arkansas, right out my bedroom window. Just skies and trees. (Photo taken July 19, 2012.)

I became a full-time Sick Person. I became disabled.

I certainly never ever ever expected that to happen. I’ve worked since I was 10 years old. I paid my way through college. I paid my way through graduate school. Everything I have, everything I own, everything I was able to give to others, was the result of my hard work.

But I became sick, and sicker and sicker, until I finally had to admit I’m disabled. (Which by the way, is not a bad thing. It’s not a moral failing. About 20% of the population is disabled.)

My blog focus has changed. I always meant to use this blog as a place to talk about hard things and the Dark Places, like mental illness, to Shine a Light into them.

As I said in my Intro post on the topic way back in September of 2012, “I believe that part of my job here on this planet is to talk about these bad things. To shine light on those dark places, and illuminate them. If we can’t see them, we can’t fix them. If we see them, and turn a blind eye, we’re just as culpable.”

But primarily, I was gonna use this blog to promote myself as a writer, editor, artist, and marketer, and to promote other creators.

Now, I use my blog to advocate for chronic illness and all the other people like me.

My posts are also a lot lot lot longer. Most of the early ones were less than 400 words. Now they are more like 2,000 words. (This one is almost 3,000, and I’m not anywhere near being done!) (And you might wonder why I’ve become more verbose!? I guess because I don’t talk to humans very often these days!)

I’ve become a subject matter expert on many health conditions.

Y’all, I’m a hippy chick flower child artist. I never in a bajillion years thought I’d know words like ‘radiculophathy‘ and ‘stenosis‘ and ‘expressive dysphasia‘ and ‘inflammatory polyarthropathy‘ and ‘ataxic gait‘ and ‘occipital neuralgia‘ and ‘dorsalgia‘ and a whole bunch of other similar hard-to-pronounce words, and how they all relate to me personally. As in, those are ALL diagnoses I now possess.

I definitely didn’t think I’d know that the ICD code for Myalgic Encephalomyelitis (MEcfs) is G93.3, or for that matter, what ‘ICC code‘ even means.

I lost my careers. I can’t do any of the things I used to do that made me, well, me. The things that gave me my identity. I can’t take photos or paint or sing or teach or create or do marketing or edit or write (each blog post you read is the result of immense effort where I eke out a sentence here and a sentence there) or develop and maintain websites or develop relationships with media or raise money for nonprofits or volunteer for worthy causes or help people in need.

If I magically got well tomorrow, I doubt I’d be able to go back to my career as a marketing and public relations guru: so much time has passed, I have no idea what best practices are.

I no longer care what I look like. I don’t care about fashion or styles or regular social conventions anymore. When you can barely wash your hair, and at most once a week (more like every two weeks for me), you stop worrying about things like shaving your legs or wearing makeup or painting your nails or coloring your hair – so it’s a lot greyer than it used to be! (You also don’t have the funds for doing any of that. Cuz, doctor bills and medications.)

When textures can physically cause you pain, you don’t care what your clothes look like – you want them to be comfortable and functional. I now have a closet full of beautiful clothes and shoes I can’t wear. And I pretty much live in PJs now.

Time has lost all meaning. When you’re a working gal, you measure your life by bank holidays and vacations and big events.

Now? Not so much. I often have no idea what day it is, and wouldn’t know, except for my paper calendar and the date and time on my phone.

The other day, coming home from a doctor appointment, I saw kids get off the school bus and was utterly surprised and wondered why. Then I remembered: oh yeah, it’s August! When school starts! How in the heck did it become August 11 of the year 2019? How have I been full-time ill for almost five years now?!?

Seven things I’ve learned:

Yup, I’ve learned some hard lessons. Actually, a lot more than just seven, but to stick to the theme, I’ll just share seven, in no particular order.

Progress, not perfection. Celebrate the small things.

This goes back to my April post “Just One Thing“. It’s okay if I can only write one sentence at a time, or only put away one dish, or fold one piece of clothing. I don’t have to do ALL THE THINGS, or get them ALL DONE RIGHT NOW, and they don’t have to be perfect. (My OCD often begs to differ, but I’m learning not to listen to it.) (Sorta.)

Every single thing I’m able to get done, no matter how small, is worth celebrating. Sent thank you notes to the people who donated to my Facebook fundraiser? Woot! Wrote and mailed thank you cards for gifts I received for my birthday! Yaass! Filed and logged a couple receipts from doctor appointments? Well done, me!

“Success” may look different these days than it used to, but it’s still worth being joyful about!

Some of the kindest, most understanding and supportive people are utter strangers.

I have been blown away by the people who have helped me as I became a Sick Person. People I’ve never met in real life. Who answered questions about various illnesses and treatments and shared resources. Who sent me funds via paypal or things off my wishlist. Who sent me messages saying that my words have helped them. Who have virtually held my hand as I’ve grieved over all I’ve lost. People who’ve cheered with me over small accomplishments and victories.

I’ve also been amazed at how many sick people are spending their precious energy advocating for more science and less stigma for so many disabling diseases. People who have applauded my efforts. People who have taken up the torch and kept going for and with me when I’ve been too tired to go on.

Some things just don’t matter. Not everything is important.

So, yeah. My baseboards are grimy. Furbunnies are multiplying under my furniture. The mirrors have streaks. There are dribbles on the trashcan in the kitchen. Towels and shirts aren’t neatly folded.

But none of that matters. And: it’s okay to watch Netflix. It’s okay to play a stupid game on my kindle. It’s okay to lay in bed wearing my noise-cancelling headphones and eye mask, if that’s what I need to do. Because what matters is taking care of myself, and then doing my best to take care of my husband and my fur-kids.

Listen to my body. Ration my energy.  I was always an overachiever. I always pushed myself to do more and be more and learn more. I pushed myself until my body broke.

I never really paid attention to my body – it was just the vehicle that allowed me to do all the things.

Now, I’ve learned (okay, am learning) that if my body says I need to rest, I rest. If I need to eat, I eat. And remind myself over and over, see #3!

Being kind to myself was probably the best thing I could have done, and still do, tho it’s hard sometimes.

Tolerating my disease is not giving up. I fought and fought and fought to find out what was wrong with me. I refused to accept that I was ill and wasn’t going to get better.

Until, I finally did.

Part of that was a lot of therapy, and a lot of reading other blogs written by people with chronic illness, and talking with other patients.

What really helped was taking the pressure off myself to be what I had been before and to do what I did before. To stop judging myself.

I learned to tolerate and live with my disease, instead of battling it.

I matter. I’m worthwhile.

Before the onset of ME, I used my ambition and hard work to prove my worth. When I got sick, I felt like the universe was playing a cruel joke—I felt worthless before, when I could do so sooo much more, and here was this illness saying, “Now you don’t get to do any of it. I’m taking away everything that makes you, you. I’m taking away everything that you consider makes you worthwhile. Now how do you feel?”

By the way, that above paragraph? Words I said. Because I have MEcfs, I was able to be a research participant for a graduate student. My words and experiences helped her with her thesis, Patient Narratives of Myalgic Encephalomyelitis: Situated Knowledge for Re/Constructing Healthcare, and hopefully, will help future medical students learn to be better listeners as doctors.

Because of my illnesses, I’m also a research subject for symptom reporting for Arthritis Power by CreakyJoints, a research initiative in conjunction with rheumatology researchers at the University of Alabama at Birmingham.

Oh, and if you have arthritis or fibromyalgia or similar conditions, you too can participate in Arthritis Power and help researchers understand these diseases. For instance, here’s a medical research paper published in the exciting sounding journal Annals of the Rheumatic Diseases: Barriers to rheumatoid arthritis treatment optimisation: real-world data from the arthritispower registry.

See? My – YOUR – experiences matter.

I can’t do much, but I can be kind. The header image for all of my social media is one of my photos with the quote “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.”

And I mean that, and I try to live by it.

As I said to the graduate student, and was quoted in the aforementioned graduate thesis, “I can be kind. I can be on my support group and someone says, ‘I’m having a really shitty day’, and I could say, ‘okay talk to me’. I can listen. And I feel like what’s missing a lot in our society is the feeling that bearing witness is worthwhile. So, when I’m talking to someone … I’m bearing witness and I’m helping them carry that burden.”

Our society seems to value money and things and accomplishments and awards over kindness, but kindness is what we need most.

Seven Three people who read my blog and why:

I asked about 14 readers and friends if they wouldn’t mind giving me a quote for this blog post, but because I only thought of it on Wednesday, I only heard back from three of them. So here’s what they said, in their very own words (and in the order in which I received them):

“Why do I read? Because, you endure ME. And, as a friend, I want to learn more about what you have to endure, and ways I can better support you, and others fighting ME. You are very active in putting information about ME on your blog. It’s helped me better understand how ME affects you, and others who have it. Now, I monitor science and technology news to learn more about ME, and its causes, so I can be a better friend.

“You are not missing to me. Never have been. Never will be.”

~ He said: “Call me Mark. As always. 🙂.” Mark is a computer tech and flash fiction writer, whose words you can find on his blog at My Souls Tears.

~Liz, an ME/CFS patient for 28 years, who serves as the #MEAction Georgia state advocate, which you can find on facebook, twitter, and instagram, wrote:

“I met DSavannah at a screening of Unrest in Atlanta. We had both struggled to get to the theater but we were happy to be there, in public, out in the world. I don’t think either of us had the strength to stay until the end of the movie. That’s ME/CFS.

“In her blog, DSavannah discusses the messy, burdensome truths of living with chronic illness. She tackles the stigma and shame and guilt that all people with chronic illness experience. Then she goes further and suggests that we all give ourselves a collective break. To hell with the stigma, she seems to say, Look at what I CAN do!

“As a long-term patient with ME/CFS, I feel the shame of not being able to somehow heal myself. DSavannah seems to relate to this, and she refuses to apologize. She speaks boldly from her bed.

“I used to find her words empowering. Today it is more. To demonstrate courage in the face of disabling illness is absolutely essential. I read her blog and laugh (THANK YOU!). I read her blog and think, Okay I can do this.

“Congratulations on 7 years of writing! That’s truly something to be proud of.”

(dSavannah note: As you can imagine, such kind words made me cry. And those sentiments are why I keep doing this. I know I’m helping myself by expressing what I’m feeling and experiencing, but I’m also helping others.)

~a pwME who has been sick for 20 years, who allowed me to link these sites – Patient-XX40, Invisibly Ill, and Inspiration Domination – but asked not to be named, wrote:

“Initially, I was compelled to read D. Savannah’s blog because I knew she is a warm, engaging, compassionate, intelligent, driven woman who has multiple interests in common with me. I continued to read because she continues to pour her lifeblood into each and every post. And because each and every post in some way has to do with me, M.E. (Myalgic Encephalomyelitis) and everyone else with M.E.”

So there you have it. Three people telling it like it is. 🙂

Seven things I plan to do in the future with my blog:

Oh, who am I kidding? I have no freaking idea.

For a while now, I’ve wanted to rework The Questions so I can have chronic illness bloggers and advocates answer them, and go back to featuring guests in that way, but I just haven’t had the energy/strength/time/brainpower to work on it. But, hopefully sooner rather than later. People seemed to really enjoy the interviews, both the respondees and my readers.

Of course, I hope to continue my goal of posting once a month, not just for 2019, but from here on out. And maybe even twice a month in 2020. (I don’t think I’ll be publishing a post on the 15th of this month, tho I had originally planned on it. I’m just too knackered.)

Thanks to everyone who hangs out with me, and reads my words. Happy Seventh Anniversary to my Ramblings! Sláinte!

THANK YOU! to everyone who endorsed me for the WEGO Health Award. As I mentioned in the post Help Me Help Others!, I was nominated in three categories: Best in Show: Blog, Best in Show: Facebook, and Best Kept Secret. I don’t know how many votes I ended up getting, but last I checked before the nominations closed, I was at 120 or so. I am so honored that I was nominated, and that people took the time to endorse me. Again, I doubt sincerely I’ll win out of the “over 6.5k nominations and over 130k endorsements” they received this year, but I am hopeful it will lead more people to my blog, and thus, allow me to help more people who need it.

Another big THANK YOU! to the friend/reader who sent me a bottle of Vitamin D off my wishlist for my birthday last month – because she knows how important Vitamin D is to her health, and thus to mine. And a thank you to the person I don’t even know – we connected on twitter – who sent me ink for my printer! As they wrote in their message, “when I saw the toner need on your list, I was like, yep that’s the one. You need those records! So vital for progress in our journeys.”

Don’t forget that there’s still time to donate to Alice’s gofundme for an essential electric wheelchair. (I featured her last month in the post #MEcfs Awareness: Guest Post “Send My Apologies”.) She still needs over £850! Please donate if you can, and definitely share!

THANK YOU! to everyone who donated last month to my birthday fundraiser on Facebook for #MEAction. We raised $656 for their vital efforts.

I’m sorry I haven’t been able to record my blog posts for those who have a hard time with reading. I lost my voice for a total of 62 days!!! after trying – and failing – to go my state’s #MillionsMissing event on May 11 – because my GERD (acid reflux) is back and it inflamed my vocal cords after a bad crash. I thought my GERD was gone for good after having Nissen fundoplication surgery to correct it in 2010, after having had it my whole life.

So I’m having to take meds again for GERD, I’m going to speech therapy every two weeks, and I have to rest my voice as much as possible.

To add insult to well, injury, the meds dry my eyes out something fierce, so they feel like burning little cinders, and I’m having difficulty getting the eye drops I need to help with that, thanks to insurance.

I ain’t kidding when I say chronic illness is a full-time job. It’s the WORST.

Note: the birthday balloons, confetti, cake, etc. art that I used in this post is from the Birthday Badges collection on Designed by Freepik, which is free as long as I include this wording and a link. I re-worked it all to match my colors and how I wanted everything to look (pack name: pack-pegatinas-cumpleanos-colores-estilo-retro).

I’m thrilled I could remember how to change the colors (in Illustrator) and make my own layout (in Photoshop), something I wasn’t sure I’d ever be able to do again… even if I’m super slow and probably not doing it correctly, and it’s not as perfect as I want it to look.

Actually, creating the art came easier than writing the words for this post. Go figure. Our brains are weird, y’all.

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in almost five years, and I get no disability benefits – and my medications and supplements cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• by donating via paypal
• or sending me something from my Amazon wishlist.

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!