Having a chronic illness is hard. We do things at a pain level that would keep most people in bed, and we do it every. Single. Day. In addition to Fibromyalgia, I also battle Depression and Anxiety, and there are times when it feels like managing everything is an insurmountable task. There are times when it feels like I'm Sisyphus and my job/to-do list/goals/dreams/responsibilities are the rock I have to push uphill everyday, and my symptoms/illness/etc. is the reason it rolls back down to the bottom of the hill every day; and I just never seem to get get that rock to the top of that hill.
Like I said, living with a chronic illness is hard. Working this hard every day for a prolonged period of time and seeing little results as far as how you feel, never seeming to get better, and considering there is no cure in sight- it's hard both physically and emotionally. It's also easy to go to what I call "the dark and swirly place," which is not a state of mind you want to be in, trust me. Living with that kind of demoralizing existence every day is exhausting in every way- it's really, really hard, and sometimes in order to keep going and keep fighting, you have to stop and rest.
I'm not just talking about physically resting when you're in physical pain (and are basically bedridden and therefore forced to rest)- but I mean taking a mental rest when you need it as well. It's so important to remember to regularly practice self-care so you stay as healthy, both mentally and physically, for as long as possible- but it's also important that when the time comes that you need to take a real break, you recognize it, and you take it. Unapologetically.
Maybe you need some serious physical rest. Maybe you need some serious mental rest. It doesn't matter. The time to stop and rest comes for us all, every human on the planet, because life is hard, and every once in a while, you just need it! Now, for those of us who have chronic illnesses, that time may come more often that it does for people that don't. People may not understand why you need the break. That's okay. Take the break anyway.
It doesn't help that this world tells us to validate ourselves by our output. By how busy we are. It tells us to feel shame when we're resting and to work through the pain and to be as busy as possible and take on as many projects as possible, and if you're not running in circles you're not doing enough.
Don’t listen to the messaging the world is selling you, listen to yourself, and if you need to rest, allow yourself to rest so you can keep going. So you can show up as the best version of yourself. Take the space you need to heal so you can come back swinging. There are benches along paths for a reason- so you can take a break and rest, to heal or to take a moment to enjoy life, and then continue along your path.
I recently had to take a rest, and I'm slowing coming back into myself, and that's okay. Our pace is our pace, and that's okay. I needed a break so I could keep going, and I'm taking it. And it feels great.
Wishing you the time and space you need to be your best self,
FSC Founder and Fabulous Fibro-Fighter
It seems like that for a while now we've been hearing a lot of talk from people who praise the power of "the daily routine." It turns out that there are a lot of people out there who have made a point to identify a list of things that they try to work into every day in order to be or feel like their best selves, and then make sure they do it. Some people have a specific morning or bed-time routine that they stick to religiously, while others simply have a list of things they make sure to work into their lives throughout the day or a certain number of times every week- and these people swear by the benefits this strict regimen brings.
But what do you when you don't know how you're going to feel every day, how much energy you're going to have, or what kind of symptoms you'll be working with? It's all well and good to say, "I want to eat a healthy breakfast every morning to make sure I start my day with the best nutrition possible," but it's another to be able to get the groceries, and get up and make something for yourself (and possibly others) every morning when no two mornings are the same because your symptoms can vary so widely. You may be able to do this some days, but is doing it every day something you can realistically hold yourself to?
A couple weeks ago I had to travel for work, and I worked pretty hard (and put in some long hours to boot) on this trip. I'm sure it doesn't surprise my fellow Spoonies to hear that when I got back, I promptly got sick. It started with a sore throat the morning after I got back, and before 24 hours had elapsed, I had a full-on Summer cold. Boo!
It's unfortunate that most Spoonies tend to have a higher chance of getting sick when they push themselves too hard, but the fact that getting sick makes our other symptoms worse seems just downright rude. Being inhibited by the limitations my Fibromyalgia symptoms place on me is bad enough (I'd much rather be able to work and have adventures without worrying about getting sick and/or a possible flare), and let me tell you, being a sick exhausted mess is NOT how I wanted to spend the last two weeks!
I consider myself lucky in that I'm still able to work, but this means that when it gets “busy” at work, it affects me more than it affects my coworkers. This means that I’ve had to unapologetically build breaks into my day/life that "healthy" people don’t necessarily need. This means lots of breaks away from my desk (especially on “high-symptom” days), naps during my lunch break, and lying down and resting (sometimes even straight up napping) immediately after work. Now, this also means not usually being able to do anything else in a work day because I’ve used up all my energy at work, and need to recharge to go back to work again tomorrow. This also means that I spend a lot of weekend time catching up on rest I lost paying it forward during the week, and using what little energy I do have on the chores that can't be put off any longer. This all adds up to not much of a social life, but a hell of a knowledge of what’s good on Netflix (please send recommendations!). Sounds super fun, right?
In related news (wait for it...), I turned 33 this week (which means I'm still not dead, y'all!!!), and I always like to get away and have an adventure on or around my birthday. I love dedicating a day to celebrating LIVING instead of the daily mode of simply surviving. At this point in my life, I've been dealing with my Fibro-symptoms for 19 years, so I've had some time to learn how to deal with my body's ever-changing needs, which comes in REAL handy when you want to have an adventure day but also have Fibro- which is a real toss-up situation no matter how you dice it, but so far, I've got a pretty track record! (Keep your fingers crossed!)
This year has been busy in pretty much every aspect of my life, so having a high-action adventure this year was out of the cards (ain't nobody got spoons for that!), but spending a few days exploring a new area was definitely in the cards- so I decided to do that.
IT'S OUR DAY! May 12, 2019 is Fibromyalgia Awareness Day and to celebrate we're rolling out some BRAND NEW CUSTOM RESOURCES!
You already know that we added some new playlists to our FSC Spotify channel this week, but now we've got some brand new downloadable resources for you to enjoy!
Head over to our Resources page to see all the tools and resources we've compiled, and be sure to enjoy our publicly available resources today!
Free Custom Downloads from The FSC:
Bullet Journal Template Downloads
Fibro-Strong Quotes: The Affirmations Edition
Fibro-Strong Quotes: The "Gentle Reminder" Edition
Fibro-Strong Quotes: The Inspirational Edition
Fibro-Strong Quotes: The Warrior Edition
To get access to even more downloadable resources, be sure to JOIN THE FSC (or check your inbox), and let us know how you're celebrating Fibromyalgia Awareness Day in the comments below!
-FSC Founder and Fabulous Fibro-Fighter-
Looking for new music? We’ve got you covered!
This week we added two new custom playlists so we’re ready for your every mood! From “rest day” and “brain fog,” to “Fibro-strong” and “Fibro-fabulous” - we’ve got it all!
Stay tuned for more from us during Fibromyalgia Awareness week as we gear up for Fibromyalgia Awareness Day on Sunday, May 12th, and here's to a musical day 💜
-FSC Founder and Fabulous Fibro-Fighter-
Fibromyalgia Awareness Day is May 12th, which is just a few days away, so in case you were looking for ways to raise awareness on our special day, we thought we'd share a few ideas about how you could raise awareness and celebrate! Check out our ideas below, and please share your plans and ideas with us in the comments below!
We hope you enjoyed these suggestions, and remember, Fibromyalgia Awareness Day is just a catalyst to raise awareness, and you can you work to bring awareness year-round!
Stay tuned for more from us to continue celebrating Fibromyalgia Awareness Week!
-FSC Founder and Fabulous Fibro-Fighter-
We’re getting ready for a great week here at The FSC and want to make sure you know where to see updates from us this week!
We can’t wait to share some new things with you this week as we gear-up for Fibromyalgia Awareness Day on Sunday, and there will be some special treats just for our members, so be sure to join The FSC (link below) to make sure you get access to everything that’s coming down the line, and don’t forget to follow-us on your favorite sites so you don’t miss a beat, and you'll be hearing more from us soon!
Mighty Network: https://the-fibro-strong-collective.mn.co/
-FSC Founder and Fabulous Fibro-Fighter-
As one of the approximately 12,000 people in the USA with Fibromyalgia, I can personally attest to the need for accessible places. Most of the time, I'm pretty able-bodied and can get around fine, but not everyone is, and frankly, when my symptoms start acting up fatigue and muscle weakness become very serious issues, and my abilities to walk, carry things, etc. need to be ascertained/addressed from moment to moment in times like this. Now for me, walking isn't always easy or reliable when my symptoms flare, but staying home and binging Netflix isn't always what you want to do (or the healthy choice). Having accessible places that you know you can go is really important when you may not necessarily be as able-bodied as other people or don't know how you'll feel from one moment to the next, and fun fact: not knowing places that are accessible for you can be SUPER depressing.
Now personally, I love nature. I love a garden, a nature walk, a hike, etc- but these types of places are not always great when you're symptoms are flaring, walking is difficult, or if you rely on a mobility aid- which is, as you can imagine, just a total bummer (to put it lightly). Now, being a Star Wars fan, I wanted to see where they filmed Endor, so I definitely wanted to go to Muir Woods, a national park about an hour away from me, so you can imagine how happy I was when I saw that Muir Woods was totally wheelchair accessible as they had a boardwalk path serving as the main path of the park.
This meant, no matter how I was feeling, I could enjoy a pretty epic National Park- and this isn't always the case, so I was super stoked! Gardens, a lot of the time, will have some paved/firm paths, lots of benches and fairly close parking, but nature reserves/national parks and hiking trails are not always the most welcome let alone the safest choice when you're flaring or don't know how you'll feel from one moment to the next but NEED to get out of the house, and a set-up like this park had totally gave me the warm and fuzzies.
This week, there was a great member discussion about what weather is best for Fibro-Fighters that really stuck with me that I want to talk about.
It all started because, while I live in the Bay area of California (Northern California) now, I used to live in Orange County, California (Southern California), and last weekend I went back for a baby shower- and man did my body feel different when I got there! I knew that the cold wet winter that lingered until early this week in the Bay area (we're finally getting some good weather this weekend!) has added to my aches and pains, but it was so nice to go to a hot, dry place for a weekend because I definitely felt a little better!
And that got me thinking, did any other Spoonies have a climate they felt best in? So I asked the question in our Mighty Network, then expanded the discussion to our other Social Sites as from the responses, it really did seem like Spoonies did feel better in a certain type of weather!