Welcome! Did you know that May 12th was MECFS International Awareness Day? With that in mind, during the month of May, I’m joining in on Instagram with other chronically ill people on the below pictured spoonie challenges, posting once daily as able, to spread awareness on a variety of MECFS topics. In order to try to pace my energy as best as possible this month, while sharing awareness far and wide, I’ll be bringing that content over here to WordPress each Tuesday this month. This post includes the 13th through the 19th below.
Today’s prompts: I’m inspired by & the most difficult thing
Flaring so keeping it short… that whole self compassion thing is a work in progress for me.
I’m inspired by Dr. Ron Davis (pictured), Professor of Biochemistry & Genetics and the Director of the Stanford Genome Technology Center at #StanfordUniversity, his team, and his family, as well as the teams of researchers working on MECFS around the globe.
The most difficult things for me are grieving the loss of my quality of life, while still living it, and dealing with those health care professionals who demean me because of their lack of education and unwillingness to learn from their patients.
Today’s prompts: Your favorite place & create something
One of my favorite places in the world is ‘The Garden’. It’s about 15 minutes from my home and it’s open to anyone, seriously if you’re ever in San Diego, it’s worth a visit. It’s free, and the views are amazing… if you like peacefully looking out over the ocean while surrounded by plants and flowers. 😊 The stairs keep me from visiting as I’d like, but I’ll get back there!
Today’s prompts: Self Care & Hope
Self care has never come naturally to me. I’m not talking about personal hygiene, I’m talking about taking time out for yourself to relax, refresh, and recharge. I’m more of a charge it until you drop kind of person, or I was. So that’s exactly what I did. I charged it as hard as I could, with every minute of the day, until I dropped…fell ill.
If you’re healthy and you’re reading this, please remember to take some time to allow your body to heal and rest. Oh and I see you at the back of the room thinking you’ll do all that while you’re sleeping…I’m here to tell you it doesn’t always work that way. Do the thing, the thing you say you never have time for or that you feel selfish for doing. Do the thing that is just for you. Even if it’s as simple as letting your favorite song finish while you pull into the driveway, just do it (sorry, not sorry nike).
As far as Hope – the word takes on a whole new meaning when it’s attached to illness. If you’ve been there, or have a loved one who has, you know.
My hope? My hope is that larger governmental grant requests for MECFS will come through and people will continue to donate to places like Open Medicine Foundation so that researchers can continue to research and find the cause, so that tests can be created, so that treatments can be identified, so that a cure can be found, so that MECFS can be cured, millions and millions of times over.
The CDC estimates that 17-24 million people worldwide have MECFS.
Today’s prompts: The hardest part & numbers
The hardest part…is difficult to choose. • There’s the never knowing which day will bring which symptoms so it’s impossible to know what your body’s abilities will be from one hour to the next, and consequently what you will or won’t be able to do. • There’s dealing with health care professionals, friends, and family who think you’re just tired, depressed, malingering, or lazy. • There’s the vertigo, gosh I hate the vertigo. All you can do is curl up in one position, not move your head, and wait for the spinning to stop. • There’s so much more but I try to keep my thoughts positive so I’m going to leave it at that. 💙
Numbers…there are so many numbers. There are charts and graphs showing how common the illness is, how ridiculously low the funding is, how it affects both men, women, and children, but truthfully the first ‘numbers’ that come to mind are my Fitbit heart rate numbers.
One of the most helpful tools I learned on an MECFS group was how to pace by staying out of my anaerobic threshold. If you’re curious how it works, here’s an article discussing how MECFS affects the oxygen in the cells and why pacing is so helpful, as well as how to pace.
Today’s prompts: Medical Advice / Support & Community
These two prompts go together like peanut butter & jelly.
I don’t know how else to explain it except to say it’s been ironic. When the medical community, who you assume would provide advice and support doesn’t provide any, you are left with no choice but to turn to the online communities in search of any help you can find.
The facts: I’ve seen over 30 health care professionals, directly and indirectly, related to MECFS. Aside from my initial diagnosing Dr, who told me there was “nothing more [he] could do for [me]”, not one other doctor has offered knowledge, advice, or support with regard to MECFS (aside from telling me to exercise). In fact even after begging through tears for help, UCSD Rheumatology refused to see me because I have it (they are studying it by the way). Thankfully online communities offer more knowledge and support than you could imagine. Primarily because people have had no choice but to go online for support. You can find everything from discussions about symptoms and what’s worked vs what doesn’t, to the latest scientific knowledge broken down into laymen’s terms. But most importantly you will find support. And you just can’t imagine how important that becomes with this illness. It can become extremely lonely for some people and knowing there’s someone out there who will sit with you online saves lives, literally.
In the spirit of complete transparency, I have regularly seen a therapist for support throughout the illness. Before you form an opinion let me just say this, this illness is traumatic. Finding a therapist who is willing to wade through that trauma with you can be vital. It’s not about therapy healing the illness, it’s about being able to vent about the horrific doctors appointments, the changes in your home life, and the significant loss you experience.
Today’s prompts: Others in the IG community & Pacing myself
In an effort to properly pace my exhausted self I’m going to leave it at this today – I’m eternally thankful for the people I’ve had the pleasure of connecting with here on IG. You all make the world feel like a better place to be. 💞
Today’s prompts: Your Hopes and dreams & Achievements
My hope? A cure, or treatment for all of us, from children to elderly, from those who have had it for days, to decades.
My dreams? I try not to spend time dreaming of what isn’t, and instead focus on the blessings of each day. In fairness I’ve just never been a day dreamer. It’s odd, I know. 😁
Achievements? My doodles. I know I’m supposed to say something about my health but an achievement implies a leveling up of sorts, and honestly, not to be all doom and gloom, but my health has slowly but steadily declined. So I’m sticking with my little doodles.
If you’re wondering how I watercolor while in bed, here’s how. Let me start by saying there’s a world of knowledge with regard to drawing and watercolors, which I wish I’d been exposed to, but the fact remains I’ve had no art education whatsoever (except a high school art class that I struggled mightily in because I’m not ‘artistic’). With all that in mind, my resources are pictured. The only things missing are a small towel (watercolor doesn’t come out of anything 😳😂 the towel is to protect my clothes), and my water cup. And of course the paints, but I keep those on a shelf and add as needed.
I have an art lamp as my bedside lamp and all photos are taken with my phone. Everything is in arms reach except the water cup.
The daily post text is saved as a note in my phone so all I have to do is update the date and the prompt. Also I hashtag my most prominent/worst symptom every single day. It’s a micro vent and I don’t think I’ve ever shared that before. People ask how I do it everyday. I don’t. There are plenty of repost days, which I normally fess up to. 😊 Also my doodles are very small, maybe a few inches.
If you’re on the fence, give it a try! The benefits are numerous; one of the best parts is that when I’m drawing/painting, my brain quiets down, the pain lulls, it’s peaceful. It’s actually really fun, often the highlight of my day. Some people exercise, some people have a glass of wine, I paint. 💙
Below are a few more of my doodles as I follow along with World Watercolor Group’s daily prompts over on Instagram. Wishing you a peaceful day, which seems hard to come by with all that is going on in the world right now. Stay safe 😷🌸