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
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've been feeling pretty listless lately. Not to mention tired, achy, grumpy... all in all pretty much in desperate need of a mental and physical break.
It can be frustrating when you spend so much energy trying to make sure you're doing all the things to keep yourself mentally and physically healthy (I try to eat right[ish], get in some occasional exercise [within my limits], I speak kindly to myself and am patient with my limitations, I am mindful of my music and television/movie/book choices) and yet mental and physical health continue to be a struggle for me- and I know I'm not alone in that struggle, so I want to ask you something:
Have you checked-in with yourself lately? How are you doing? If it's been a while since you've asked yourself these kinds of questions, I encourage you to take some time and check-in with yourself. If you're not sure how to do this, I've included a few helpful resources below:
Sometimes you get mad. Sometimes, when you get mad, you are inevitably and inexplicably forced to process what happened to trigger such a passionate response in yourself. Sometimes as you're processing, you make a connection between past trauma and what you allow for yourself, and it's really hard to be that honest with yourself and to heal and grow through it. Trust me, I know- I've been through this process a million times, I'm going through it again now, and I'm sure I'll go through this or something similar a million more times before I die. C'est le vie and all that, right?
In life, we inevitably and occasionally have to look at how we deal with things; at what we allow for ourselves and how that fits into what we've been conditioned to allow or believe about ourselves. I know a lot of people with chronic physical and/or mental illness, people like me, who struggle with feelings of worth, and I want to take this time to tell you that your feelings matter. That you matter, and are relevant. I want you to know, no matter what, that your needs deserve to be met. You are not a burden, you carry a burden and that is NOT the same thing.
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