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:
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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. 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! 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. Holy cow, it's whole new year! 2018 was an incredible year, and we can't wait to see what's in store for 2019! The FSC started on Instagram in October 2017, and in 2018 we increased our presence to Facebook, Twitter, Pinterest, and Spotify. We even started an Online Community for our Members!
I founded The Fibro-Strong Collective because I felt isolated and misunderstood, and I figured most Spoonies felt something pretty similar, so I decided to do something about it. I would be lying if I said that it has been an absolute joy to have so many conversations and interactions with our community, and knowing there are other people going through the same things I go through has been so helpful! I can't thank you enough for making me feel less alone, and I hope this community has done something similar for you! As we move into the New Year and start making new plans and goals, I thought it best to start with thanking you all for last year first, because we couldn't have done it without you, so THANK YOU, and here's to more great things from The FSC 2019! Heather FSC Founder and Fabulous Fibro-Fighter 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*
The importance of rest days can not be understated. After going out last night, giving myself the gift of recovery the next day is crucial. Sitting in uncomfortable seats, walking more than usual- these are things that probably wouldn't wipe out a fully-abled person, but can and do wipe you out when you have a chronic illness like Fibromyalgia. The need for rest after doing even the most basic of chores or after a low-key night out is common, and therefore the need for rest and recovery frequent, and important to maintaining your health.
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 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. |
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