We’re getting ready for a great week here at The FSC and want to make sure you know where to see updates from us this week!
We can’t wait to share some new things with you this week as we gear-up for Fibromyalgia Awareness Day on Sunday, and there will be some special treats just for our members, so be sure to join The FSC (link below) to make sure you get access to everything that’s coming down the line, and don’t forget to follow-us on your favorite sites so you don’t miss a beat, and you'll be hearing more from us soon!
Mighty Network: https://the-fibro-strong-collective.mn.co/
-FSC Founder and Fabulous Fibro-Fighter-
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!
How good does it feel to avoid a catastrophe? Catching yourself before you fall, finding something you thought you lost- relief is a wonderful and overlooked emotion from where I’m sitting today, so let’s talk about it!
Last night, I was feeling pretty good so we went to a bar for a drink after dinner- and my purse was lost. Of course by lost, I mean it seems like someone grabbed my purse, then dumped it when they realized it wasn’t theirs, because I hung my purse on a bar hook, walked away for a minute, and it was gone when we went back to grab it and leave. Whole purse gone- total bummer. My keys (so I had no way to get in my house at that time of night so I had to leave my car and couldn’t go home), my wallet (guess I wasn’t paying- sorry!), a newly refilled Rx, and so much more- a woman's whole life is in her bag, and mine was gone.
I knew someone on the security team and apparently the hooks got doubled up and the assumption was my purse got grabbed by mistake, and we hoped it would be returned when the mistake was realized.
Fast forward to the next morning: my friend drives me home, I get in my house, grab my spare car key, and pray my car is still where I left it last night. It is! And a few hours later, I got a call from a cop who found my bag, and y'all- all contents were intact! No cards used, not money or prescriptions stolen- what a relief! I'm so grateful because I really don't know who the recovery process would have gone. I would have had to take days off work to get my ID and bank cards all taken care of, and get new keys- thank god I had a passport at home or it would have really been a situation with no way to prove who I was. And the idea of having to get a prescription refilled- they just wouldn't have done it and I'd have been out of luck!
My relief is palpable, thank goodness it was all returned! Close calls are crazy, but the gratitude and relief I feel in the recovery feels really, really good. So take a moment to be grateful for something that happend this week, maybe it was a close call, and maybe it wasn't, but a little gratitude is a great way to end a week! So go forth and practice some gratitude, Spoonies!
-FSC Founder and Fabulous Fibro-Fighter-
Spring is officially here! After a long, cold, wet winter, spring is finally here! Being in a colder, wetter climate than I'm used to this winter has been hard, and yesterday's rainfall has left me achy and exhausted, but I keep telling myself that there is just one or two rainfalls left and then it's all sunshine ahead!
I know a lot of Spoonies are affected by cold, wet weather and constantly changing barometric pressure, and more temperate times are ahead- so stay strong Spoonies, we're almost there! There is always such a hope to spring, least of all the hope of a little less aches and pains, so here's to spring!
-FSC Founder and Fabulous Fibro-Fighter-
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.
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:
In the last 18 years that I've spent managing my chronic pain and invisible illnesses, I've run into plenty of road-blocks and have had a lot to complain about regarding America's current "health care" system. Now, I use the term "health care system" lightly, because it doesn't feel like America has any real interest in keeping it's residents healthy, but rather seems perfectly content in doing the bare minimum to manage their alarmingly increasing illnesses.
In the last two weeks alone I have broken down in tears more than once because of how callously I was treated and dismissed by a medical professional- and it was not even close to being the first time this has happened to me. Prevention, wellness, and big-picture medicine seem to barely be a blip the radar of American Doctors, and despite television shows and movies showing us doctors who stop at nothing to figure out the root-cause of a patient's illness, pain, or symptoms, the reality, more often than not, is waiting an hour past your appointment time only to have a prescription or two thrown at you to "try out" to "see if it helps" while being told to "come see us again in a few months" as the doctor rushes in and out in under ten minutes flat.
If the many woes outlined on the internet as well as my own personal complaints are any indication, this kind of "health care" has left a lot of people feeling like nothing more than a means of continued profit for a third party rather than a person in need of medical attention, which got me thinking: what does my ideal health care system look like? So I decided to play a little game, a game in which I build my ideal health care system, my own ideal world really- and it looks a little something like this:
Today is a moderately high but not overbearingly painful pain day, and I don't always like to take prescription medications when I can get some relief with more natural or over-the-counter (OTC) methods (aka: unnecessarily damage my liver/kidneys and/or waste the good pills when I don't need to, lol).
Now, as someone with no medical training and a terrible memory, I have a hard time knowing what OTC medication to take for what, but as a person with a chronic pain syndrome, I probably should. So, as any thirty-something would do, I took my questions to the internet! Check out what I've found below!
When you struggle with Fibromyalgia, Anxiety, and Depression it can be hard to get out of the house. Between pain, fatigue, and the occasional bout of ennui, I don’t get out as much as I would like.
Today however, I took advantage of a low symptom day and went to check out the magnolia blossoms (now in bloom!) at the San Francisco Botanical Gardens, and wow did it do the trick.