It’s been a while since I stopped in just to say, “hey, how’s life going for you? Here’s what’s happening with me.” Mostly that’s because my symptoms have been limiting the amount of time and energy I have to write, revise and update The Zebra Pit and I feel like I should concentrate my efforts on symptom relief over camaraderie. But I have very exciting news to share, so I thought I’d combine it with a bit of an update.
COVID-19 Near & Far
Sometimes sticking to the more clinical posts makes me feel more machine and less human– that is if machines suffered from chronic pain and faulty wiring! It’s been a rough year on us all and I know by far I’m not the only one struggling with the times and how to cope with all the devastating news both local and global. I’m sure I’m also not the only one here in the US who wonders if we’ll actually survive the current administration here, even if we manage to make sweeping changes this coming election.
Dealing with a new baseline of health after having coronavirus has its own challenges and it’s hard to bear all the suffering this pandemic has and will continue to dole out, largely due to serious mismanagement of the crisis in all but a few countries. The already astronomical numbers of dead and infected climb daily while our political leaders worry more about an economy that based largely on imaginary money while the very real human toll crushes us all, be it in mind, body or spirit.
I also feel the pressures of what will surely be an influx of people dealing with their new normal of ME/CFS like symptoms after contracting the coronavirus. No doubt they will be desperate for answers and some much needed relief from severe head pain, chronic heart and lung issues, debilitating fatigue and a variety of other symptoms brought on by a malfunctioning nervous system. And rightly so. There is little doctors who focus on pharmaceuticals and surgeries can do for these patients, so those of us blogging about the ME/CFS life and some of its solutions need to be ready to help.
I in no way relish this anticipated boost in popularity, as much as I love to worry over my blog stats. My heart breaks for every person this terrible virus changes irrevocably. I only hope my bag of tricks works well for them and that I continue to find a few new ones for us all.
For me with all of my preexisting conditions, the coronavirus set me back by years, to those bad old days of being bedbound and feeling about as useful as a paperweight a large portion of the time. I started a new health and wellness group to try to help keep myself and others stay motivated to do the sometimes difficult work improvement asks of us. With as often as migraines are putting me down, I confess I’m struggling with keeping up a good pace. I’ve decided that I really need to be content with covering one subject a month. Luckily group members seem satisfied enough with this plan, given we all have the rest of our lives and care to contend with.
Too much time on screens or being upright means screaming migraines with auras the likes of which I’ve not quite experienced before. I could swear my optic nerves are on fire, because my vision is impaired more often than not. Being upright has much the same effect, with the addition of an increase in pressure that makes it feel like my head is going to burst and a shift in perception that’s akin to being on a cruise ship in stormy seas in a room full of funhouse mirrors while riding a tilt-a-whirl.
There’s been an increase in my asthma by about 10 fold and a wheezing congestion that won’t quite abate. I can’t help but wonder how much of it has to do with post-COVID inflammation and how much with my existing issues. There’s the fact that we’re in the thick of the pollen season and my lungs are often challeneged this time of year by my MCAS and asthma. Then there’s the intracranial hypertension that continues to be a problem and points to possible craniocervical instability (CCI) found so often in hypermobility disorders. Then there’s the compromised blood-brain barrier and higher than normal protein levels in my CSF that my doctor argues could be Multiple Sclerosis rather than CCI. MS is yet one more comorbid condition found to occur more commonly in the hypermobile and one I’ve questioned on and off over the year myself.
Whatever this shit storm means, I’ve done my best to adapt my life to try to manage the symptoms so I can stay in contact with the community and keep the posts coming, despite my diminished capacity. I’m finally fully set up to work in bed and my productivity is much better for it. I’ll definitely be writing more about the things I’ve done to adapt to life in the bedroom. It’s so important to our mental health and personal wellbeing that we find and engage in activities that fulfill us. You might even say our lives depend on it.
Perhaps my next bit of news is proof of how much we can accomplish, even when we can’t leave our homes. Even when we’re mostly confined to bed!
I’ve been nominated for
one TWO WEGO Health Awards in the BEST IN SHOW: BLOG and BEST IN SHOW: FACEBOOK categories!
What’s a WEGO Health Award?
WEGO Health is one of the only organizations that works hard to support and recognize patient advocates and influencers who dedicate their time to supporting people with chronic illness. Every year, WEGO Health collects nominations from community members, and then asks for endorsements, which is a way of saying, “I agree she/he is doing a great job supporting patients.” Endorsements are open for the month of July.
Six finalists from each category are then chosen: three with the most endorsements and three chosen by a panel of judges to become finalists. Finalists will be announced on September 2nd, 2020. Winners will be selected by a panel of judges and announced during the HLTH Event in early October.
There are sixteen categories that cover the breadth and scope of the roles patient leaders play in our community. It’s the perfect way to honor and celebrate the advocacy efforts of patient leaders around the world. People who do this work often do so with little compensation or recognition.
What Winners Receive
It’s not only an immense honor, winners get to enjoy a variety of perks:
• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year*
*Winners will have priority for speaking engagements and industry exposure events throughout 2021, depending on the state of COVID-19.
I couldn’t be prouder that someone in the community chose to nominate me for this great honor. I have two nominations for the blog category, one of which may have come from Stacey over at Fighting with Fibro (Thanks, Stacey!). Ironically, she’s one of 3 bloggers I nominated, as well.
As if it wasn’t enough to blow me away that I got two nominations in the blog category, I was certainly done in by the third nomination in the Facebook category. Honestly, I was dumbfounded.
UPDATE: Amazingly, just after I posted this, I was notified I’ve been nominated for a Lifetime Achievement Award, as well! Wow!
Late last year, we almost lost The Zebra Pit entirely when my husband’s sick leave turned long-term and I had little choice but to slap on a name tag and attempt to go to work. I even shut down my facebook group which had built up a nice membership. When I opened a new group with a new name and philosophy centered on social learning just last month, I never imagined someone would already find it worthy of a nomination! I feel like the belle of the ball!
I hope you’ll endorse me! Alternatively, if you think there’s a different category that suits what I do better, you can always nominate me for that category instead. I’m really just amazed and honored to be nominated at all, but I can’t help but think about the great uses I could put these funds toward at The Zebra Pit. It would go a long way.
To learn more about the WEGO Health Awards, the nomination and endorsement processes and more, visit WEGO Health Award Information.
A Million Thanks!
I would be remiss if I didn’t mention all of the amazing support from community members who helped get me here, from my blogging partners in the chronic illness blogging groups I’ve belonged to who helped disseminate our information to the community members who visit and share our posts with such loyalty to those who have donated products for me to try and share with my audience, to those who have partnered with me in making the Zebra Pit everything it is today. There are so many, I couldn’t even begin to mention them all.
Of course I have to mention those who have contributed a great deal of time, energy and ingenuity to our content here. Pamela Jessen, who regularly contributed her expertise for our readers last year and David Curtis, who’s been a faithful assistant editor and contributor since The Zebra Pit’s inception. David and Pamela’s own blood, sweat and tears are also represented in these pages and they both hold a special place in my heart and in this work.
I’d be remiss if I didn’t mention the skill and talent of Michaela Oteri, a long-time supporter and graphic artist with EDS and ME/CFS who helped me realize the dream of an official mascot for The Zebra Pit by creating the incomparable Ms. Ehlie!
The whole community really deserves this award. I couldn’t possibly do this work without the added fuel of the support everyone in the community offers!
Who I Nominated for the WEGO Health Awards
I try to pick some new people to nominate every year. We all know my memory isn’t the best, but last year, I’m fairly certain I nominated A Chronic Voice, as well as Hells, Bells and Mast Cells who have both been nominated by someone else this year. I feel like there was a third, but I just can’t remember who it was now. You can endorse A Chronic Voice here and Hells, Bells & Mast Cells here.
This year, I wanted to honor Stacey over at Fighting with Fibro where she shares about her life and conditions with a refreshing openness and honesty. She also shares some fantastic tips on symptom improvement and pain relief for those with Fibromyalgia and other chronic pain conditions and talks about the challenges of creating a fulfilling life and managing some of the mental health aspects many of us fibromites struggle with regularly. She’s a true asset to the community. Endorse Stacey Now!
I also nominated Caz at Invisibly Me. It’s not secret Caz is one of my favorite people in the world. She not only writes an amazing blog with a speed I can barely comprehend keeping up with these days, she’s just an absolutely fabulous source of support to so many of us chronic illness bloggers! Caz’s lovely personality and great sense of humor isn’t all she has to offer. She provides an amazing number of product reviews to help us cope with the many symptoms of chronic pain and illness, along with some great advice, insights & savings tips in her mini-me updates, frugal Friday posts, and some great tips on life, health, cleaning and more. Endorse Caz Now!
The final person I nominated this year was Cynthia, The Disabled Diva, because I’ve just been so impressed by how much she’s grown over the last year or so as a blogger and chronic illness advocate. Cynthia is also a prolific writer who strives to share practical tips, product reviews and helpful advice for people with chronic pain and illness. Cynthia also has an amazing sense of humor with a bit of a rebel attitude that I can’t help but admire. Endorse Cynthia Now!
I hope you will endorse their nominations, as well as my own! And don’t forget about any of the other great advocates, bloggers and influencers in the community who have touched your life in some way. It Only takes a minute! Endorse Michelle Curtis/The Zebra Pit here
Winning isn’t really what matters to me. Of course the funds would be great, but I’m satisfied with what these nominations symbolize: This work is important. The Zebra Pit is reaching the right audience and impacting the lives of others in important and meaningful ways. And it’s beginning to show.
The Zebra Pit’s 2020 Growth
On one final note deserving of a few cheers, The Zebra Pit officially topped last year’s numbers within the first six months of the year! Even better, these numbers are a far cry from our lean years starting out:
Not only did we get as many views in the first 6 months of 2020 as we did in all of 2019, we did it with way fewer visitors, showing that people come for one post and keep on reading or keep returning to read several more! Last year, 77k visitors made up our 131,000 views. This year, it only took 33,000 visitors to reach 133k views in half the time.
We’re still working on improving our reach through SEO and advertising strategies, but I’m very proud of the loyal following we’ve developed and we see new followers across all our social media outlets daily. This may be in part the hard work we’re doing to improve SEO, ensure our resources and links come from reputable sources, and our partnerships with well respected affiliates, but it certainly hasn’t been my work alone. I know a big thanks is due to all our busy little spoonie bees who share the information on this site with their friends and family. Without you, we wouldn’t even be on the map. Thank you for all you do! You really mean the world to me.
On one last note, there have been some good times among the turbulence. Our son came to visit for his 26th birthday over the weekend and we enjoyed some Italian and chocolate cake with fudge icing. We also had a friend stay for a week while he was in between places and I have to say, he was one of the quietest, most considerate guests we’ve ever had. And then there’s this…
One thing for me has been knitting while watching TV at night with my husband or while listening to an audio book. I never thought it was a craft I’d embrace. My mom tried to teach me to knit and crochet, but it mostly deteriorated into frustration and anger and an insistence from my sister that I could never do anything right. I’ve gotten better at shutting down all of the distorted thinking that kept me from trying things I failed at early in life or that comes with a lot of bad familial memories.
I’m glad I did. I’m loving the feeling of accomplishment and the stress relief it’s adding to my down time. It’s become a very enjoyable companion and so long as I don’t go overboard and take little rest breaks, my hands seem to be handling it well! It also seems to help keep my mind better focused on the book, movie or TV show I’m trying to digest. Definitely better than a fidget toy, which I also use sometimes. It’s actually how I took up knitting. I figured if keeping my hands occupied is the point, wouldn’t it be nice to have something I’ve created as a result?
Now it’s your turn! What’s something you’ve been doing to help the time pass and get a little more fulfillment in your life?