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!
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!
So I've been really, really tired for about two weeks now (like really struggling tired), and what little energy I have gets used up pretty quickly because, you know Fibro-fatigue is weird. Well today I finally got the energy to go out and grab some lunch (I love eating lunch on a nice sunny patio!) and up to that point, everything was going great. I got myself together, drove myself to the place, and had some lunch. So far, so good. Then, still feeling alright, I decided to pop in the shop next door, then, as I was looking at the scarves, I was suddenly so tired all I wanted to do was lie down right there in the store- not exactly an ideal situation.
As a single woman over 30 I'm often bombarded with the inevitable, "so, are you seeing anyone?" question, and right now I have to stop myself from saying, "I just can't be bothered with dating right now" because I don't think people will understand (especially Grandma- you know how Grandmas are). Maybe it's the Holiday hang-over, I mean, you can only be asked if you're dating someone so many times by so many people at so many parties before you start to think, "maybe I should date more?" Even if you're quite happily not dating.
Because let's not forget: dating isn't easy, and dating with a chronic syndrome like Fibromyalgia is less easy still, but between all well-intentioned questions and the "New-Year-Means-I-Must-Make-Changes-Fever" going around, I found myself tossing around the idea of maybe trying online dating again (I've tried online dating before [for about two weeks, two different times], and I live in a small town and have very few friends as I only moved here last year, so online dating is pretty much my best bet to meet someone, especially as I don't get out much because of Fibro) but I just can't get excited about it!
Both times I tried online dating in the past I found so few people that seemed actually interesting, and so many guys that were actual douchebags it just doesn't seem worth it now that I really think about it to try again if I'm not really into the idea of dating right now (and if we're being honest, I just don't think that being annoyed with people asking you if you're dating is enough of a reason to start dating), so if you like me, can't be bothered with actively dating right now- know you aren't alone!
It's that time of year, Christmas is upon us, and this being the last weekend before the big day, stores were bound to be crowded, and yet you have to brave them to get things done. *Sigh*
It’s that time of year, it's Holiday Season! Monday is the last night of Hanukkah, this entire month is prime Christmas party time, then there’s Winter Solstice, Kwanzaa and several other observances on the calendar, and lastly, there's New Years- there is a lot going on this month! Between family, friends, and work, your calendar can fill up quickly, and for people with chronic illness, that's not necessarily a good thing.
This Holiday Season I'd like to remind you to set boundaries. Don't feel like you have to go to every party- if you don't feel up to it you can stay home. Don't feel like you have to go to every friend or family event- especially if they aren't supportive, don't understand your illness, or challenge your mental health in any way. If you don't feel up to going to a work party- don't go. You have every right to turn down invitations, to change your mind about going to things you said you'd go to, and to do what it takes to protect your mental and physical well-being.
Practice releasing your guilt if it comes up. Consider this your official pass to do what is right for you. A lot of people have a hard time during the Holiday Season, and that's okay! Please be sure to make sure you're setting appropriate boundaries and taking care of yourself while you're celebrating (or not celebrating) this month. You're worth it!
Heather, Fabulous Fibro-Fighter and FSC Founder
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.