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!
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-
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*