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! Gentle hugs, Heather, Fabulous Fibro-Fighter and FSC Founder
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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. 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. I want to talk about something I posted on our social media sites this week, because I think talking about the intricacies of living with chronic illness is important. A lot of time, people with a chronic illness or chronic pain will not do things because they know doing things will cause their symptoms to get worse. But you know how sometimes you have to do things even though you know doing it will cause your symptoms to flare? Or how random things will make your symptoms flare up? Or how you get a flare for no reason at all? So... why not occasionally do things that you want to do even though you know you’ll get a flare for doing it? Because as much as I avoid things for fear of making my Fibromyalgia symptoms worse, I also do things even though I know without a shadow of a doubt, I'll pay for it with a flare.
Maybe my inner rebel just never grew up, maybe I'm just determined to not let my diagnosis run my life, but last weekend I said “hell with it, I’m doing it anyway” when I got a chance to do a trapeze day- and I’m not gonna lie, every single muscle hurts and I messed up one of my toes and my symptoms are flaring, but it was such a fun experience and I don’t regret it at all! I spend my life in pain, and sometimes for me, it’s about doing things anyway- because if I’m going to hurt anyway, flare anyway- I may as well have a few fun stories to tell, right? Check out this story (including pics of me swinging in the air on my trapeze day) on our Facebook page, and share your own stories of fun things you're proud of yourself for not passing up with us in the comments! - Heather, Fabulous Fibro-Fighter and FSC Founder I like to keep busy while I’m resting. Yes, I know that sounds like a contradiction in terms, but here me out: I have been crazy busy lately, and I know that I need to rest so I can continue to do all the things I need to do, but resting can be so boring! One of my favorite “resting but keeping busy” things to do is craft. Pinterest has changed the craft game, and I couldn’t be happier! Like I said, I have a hard time resting and often get bored or restless, but I am also more than happy to sit and chill and try to make that cool thing I saw on Pinterest- which is easier on my body than other things so I call it a win.
Yesterday I fell on cobblestones, and today I’m in bed- and I’ll probably be here for a while; I feel like I got into a car accident. Someone who didn’t have Fibromyalgia would maybe be a little sore after falling on a hard uneven surface, but probably wouldn’t be laid up in bed for days. A lot of times, even a small physical injury exacerbates Fibromyalgia symptoms or can even cause an all out flare, which isn’t great for obvious reasons.
When you have something like Fibromyalgia that can affect your physical/mental activity levels, it's important to find things you can do when you aren't feeling your best- because being bored and upset about not being able to do what you aren't able to do/used to be able to do/etc. isn't good for your mental health. Focusing on the things we can do that we enjoy is a great way to keep yourself grounded and away from what I call "the dark and swirly place." Gratitude over attitude, as I like to say! If you need some ideas on things you can do when you don't feel up to doing much, here's a list of some of my favorite Fibro-friendly activites:
When you have something like Fibromyalgia, it can be hard to do certain things; like physically keeping up with certain (high energy) people, or feel like you're able to really enjoy something without the worry of what it will cost you tomorrow - things like this often come up around holidays and I wanted to share what I did to celebrate the Fourth of July: Nothing. That's right. Nothing. I didn't feel up to the physical, emotional, or sensory activities that go along with the holiday, so I opted to stay at home- and it was fabulous! I chose to not feel guilty for cancelling plans because I did what was right for me, and I'd like to encourage you to cancel plans guilt-free when you feel like you need to. Not everyone will understand every time, but that's okay because you're taking care of yourself!
I started acting when I was a Freshman in college, but committing to a play is no small thing. Typically, you rehearse at night for 3-4 hours, Monday - Thursday for a about three months, then there are three or four (sometimes five) performances a week for 2 or 3 weeks; so it's about a 4 month commitment. As you can imagine, with Fibromyalgia and a full-time job, that isn't something you take on lightly, and in the last six years, I've only been able to commit to two plays- but if I had my way I'd do one a year.
The only reason I felt like I could commit to the play I'm rehearsing for now is because it has nowhere near the the schedule that I'm used to- it's only two hours twice a week!- and it was AMAZING to be able to finally be able to say, "I think I can actually do a play again! Finally!!" This has been a crazy week! Work has been gearing up for a big event, and of course there was the inevitable fire drill to make sure things went well. I've also been busy in the social aspect of my life as well. I got cast in a play and have been prioritizing meeting up with people and making new friends- and it has taken it's toll. As someone with Fibromyalgia I only have so many spoons to go around, and it's not always easy to live life with limited spoons.
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