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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!
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The Importance of Creating the Time & Space to do What you Love when Living with a Chronic Illness9/8/2019 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!" 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. 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! 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. 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 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:
Want to know a little more about what we're into here at the FSC? Read below to see what our Founder is into right now!
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