With a chronic illness like Fibromyalgia, there comes ebbs and flows. You have good days and bad days- the same goes for the hours in a day as well as weeks and months in a year, and sometimes they can even last for years at a time.
The last few months have been super busy for me, and in response my symptoms have flared up, especially over the last few weeks! I'm a lot more tired and achy than usual (though I always have a base-level of tired and achy, that base-level seems to be consistently rising over the last few months), and some of my other symptoms are acting up as well. So I guess you can say I've been in a chronic illness ebb, or is it a flow?, lately.
I've talked before about not being able to stick to a regular pattern when you're managing a chronic illness, and rather than beating myself up about not being able to keep on top of the things I usually am able to stay on top of, and not being able to do all the things I'd like to or used to be able to do, I'm reminding myself that it's okay that I can't.
It's okay that I'm not currently the best version of myself that I have ever been in my life because I'm trying my best to be the best version of the person I am right now, current limitations included, and that's AMAZING and frankly, good for me! I could give up and wallow, but I'm not. I'm doing what I can with what I have, and I'm really proud of myself for that.
So if you aren't the all-time best version of yourself that you've ever been right now- don't sweat it. Just try to be the best version of who you are at this moment with what you have to give right now.
I never thought that managing my chronic illness would require so me to practice so much patience with myself, but it's so important to be mindful of how you talk to and treat yourself. Don't beat yourself up unnecessarily, praise your efforts and the fact that you're trying. All journeys start with a single step, and if you can't run, then walk, and if you can't walk, then crawl (to quote a few of the greats).
So let me encourage you to take a moment and praise your efforts. Managing a chronic illness is REALLY HARD, and if you're trying then I'M SO PROUD OF YOU!
-FSC Founder and Fabulous Fibro-Fighter-
Let's be real. Living with an invisible, chronic illness like Fibromyalgia sucks. Living with and managing an illness like Fibromyalgia affects you both mentally and physically, and can sometimes take everything out of you. This is why I think it's so important to make sure to create time and space to do what you love.
Hear me out. When life, or Fibromyaglia symptoms, get you down, you have to have something to lift your spirits. Something that makes you go, "Man, I love doing this! Life is great sometimes!" Something to hang on to when things go wrong and you want to yell, "Man, this the worst! Life sucks sometimes!"
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'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-
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!
The importance of rest days can not be understated. After going out last night, giving myself the gift of recovery the next day is crucial. Sitting in uncomfortable seats, walking more than usual- these are things that probably wouldn't wipe out a fully-abled person, but can and do wipe you out when you have a chronic illness like Fibromyalgia. The need for rest after doing even the most basic of chores or after a low-key night out is common, and therefore the need for rest and recovery frequent, and important to maintaining your health.
Sensory overload is a common symptom of Fibromyalgia, and for me, sensory overload is worse than my chronic pain. I mean, being in pain all the time sucks, but frankly I think being completely overcome by your senses is worse, even if it doesn't happen to me as often. Hell, just being overwhelmed by one sensory system sucks let alone more than one at the same time!
Now most people with Fibromyalgia have multiple symptoms, and while I think there is a lot of discussion out there about how difficult it is to manage many symptoms, I don't think I've hard anyone say that they struggle with certain symptoms more than others, and I think it's time to add some nuance to the conversation- so I'd like to say that out of my many symptoms, I think I struggle with my chronic nausea and sensory overload the most- specifically when it comes to noise and smells.
Like a lot of people, I traveled to see family for the Thanksgiving holiday. I flew from the rain and fires in California to the cold and possibility of snow in Detroit, Michigan.
This is required some preparation as I don’t don’t do well in cold, but so far wearing four layers seems to be working- but it’s supposed to snow on the day I leave so keep your fingers crossed for me!
As much as I love to travel, it isn’t easy with Fibromyalgia. Being cramped in a plane and sleeping on air mattresses or sofas or lumpy hotel beds isn’t exactly ideal. Plus, there’s activities and lots of action you don’t want to miss out on, so you try to force yourself to do more than you generally would, but don’t want to overdo it because you have to get back to work and life after the vacation is over and don’t want to work yourself into a flare- it’s a difficult rope to walk.
As a follow-up to last week's blog about the things we use to manage our Fibromyalgia symptoms, I wanted to share some of the things I use to help me with my chronic pain.
Lots of people with chronic illnesses like Fibromyalgia use modifiers to help make their lives easier day-to-day. Some use canes, wheelchairs, or other mobility assistance options, and lots of us have purchased items modified to make life easier, like laundry baskets with wheels, easy-open bottles, things like that. And more often than not, even our rooms are modified or set up in such a way as to be as helpful or comfortable as possible- like, pillows with arms and lap desks so you can use your computer in bed comfortably should you be stuck in bed for long periods of time.
I personally have done this a lot (as in, all examples above except the mobility aids are things I have or I’ve done, as you’ll see), and I’m curious about what ways or tools or things others may use to help make life a little easier.