How I Made my Bed-Space as Functional and Comfortable as Possible (These are a Few of my Favorite Things)
I feel like I've been spending a lot of time in bed lately, as in more than usual. As a person with a chronic illness, I understand that I do, in fact, spend a lot of time in bed, but coming to terms with the fact that you have to spend more time in bed than most people is never a great feeling. After a long day of work, after going out, after doing a particularly difficult chore- I often go straight to bed, usually to nap for at least an hour or two, then I spend however much time I need to in bed while I recover. So as you can imagine - I spend a lot of time in bed. In fact, I'm writing this in bed right now!
When you have a chronic illness like Fibromyalgia, you have a limited amount of energy, and it doesn't always get replenished in the time-frame or in the ways that you think it will. The Spoon Theory is a really helpful tool to help us describe to non-Spoonies how it can feel like energy is a finite and rare resource for us, and even further, helps to explain that we do not wake up with the same amount of energy every day and that all tasks do not require the same amount of energy to complete. Some days we have more, some days we have less, and some days our energy is squandered far more quickly than we think it will be- and there isn't anything we can do about it.
All in all, this adds up to an equation for Spoonies. A decision that we have to make before doing or committing to anything at any time. It's something we do both unconsciously and consciously throughout every day of our existence. We have to decide if we have enough energy to perform a task, and then decide if we will have enough energy left over to do the rest of the things we need to do that day if we DO decide to preform the task in question, THEN we decide whether or not doing the original task is worth it or not. Because of this, tasks and goals are constantly prioritized, reprioritized, put on hold, and sometimes taken off our to-do lists for good.
This week was Mental Health Awareness Week and I took a moment to reflect on my mental health journey- how it has changed me as a person, and how that in turn has affected the world around me. The results of my reflections honestly surprised me, and I wanted to take a moment to share my story and my musings because I think it's important to help end the stigma around talking about mental health, but I also want to make a point, because I think if everyone was taking care of their mental health, the world would be a completely different place.
Think about it, we would all interact with each other differently- we'd be more empathetic, more inclusive, we'd make less hurtful decisions and lash out less. Hurt people hurt people. If we take that fact out of the equation of life, we'd be left with a lot more love and therefore a whole different world!
Is doing emotional work easy? No. Absolutely not. It may actually be one of the hardest things you ever do- but isn't the thought of a better life and a better world enough inspiration to get out there and do the work?
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 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-