Fibromyalgia/M.E./CFS/Invisible Illness Awareness Week

When you picture a disabled person, you're probably like I used to be. For me, the term "disabled" used to conjure images of quadriplegics, like Stephen Hawking, or the blind, or deaf. I had no clue there is a whole spectrum of disabilities out there, many of which aren't visible to the uneducated/inexperienced, nor that they can vary in severity from moment to moment and day to day.

After the onset of what turned out to be Fibromyalgia in 2011, I have learned differently. Even though I'm half Mexican and used to sunbathe all day, one of the most debilitating symptoms I struggle with is a light sensitivity (UV rays). In fact, that is the primary reason my boyfriend and I left Boulder County, Colorado. At over a mile high and with more than 300 days of sunshine annually, I was literally stuck inside our apartment most of the day with the blinds drawn and tapestries over them because even then it was still too bright. I remember struggling to walk maybe a hundred feet to our mailbox to check the mail, because there was very little shade and even with a giant UV sunhat, parasol, and clothing, it still felt like the sun was burning into my very bones, sapping me of all energy so that I was exhausted when I got back home and just had to sleep off the rest of the day like when I used to party like an animal out in the desert. But all I'd done was check the friggin' mail. That's why we left one of the greatest places in the country - a place where you can buy cannabanoid infused transdermal patches with a credit card, surrounded by some of the most beautiful people and mountains I've ever seen. Not to mention the music scene pops off out there. And I didn't even get to explore it much because I got sick. Not that I'm bitter or anything. Moving on.

And that is just one symptom that debilitates me that you can't see. Except that I'm super pale compared to how I was a few years ago (will post pics up later to show before/after, don't have access to old pics at the moment and am crashing at 3:30am here from gnar-gnar hyperactivity/insomnia - another thing you can't see that throws me for a loop). For further details on what my Fibro feels like check out this post here. It does a pretty good job. 

What I want to rant about before I take a few more of some of my favorite meds (a discussion I will save for another time) and bongloads and hopefully finally sleep is that one thing that shocks me is how misunderstanding people can be about these "invisible illnesses". I've been critiqued/disbelieved along the way by just about everyone except my boyfriend, bless him, especially when you consider about 75% of couples experiencing the onset of illness in one of the partners will fail - that includes the more understood diseases like cancer, folks. Everyone in my family has questioned it, and most of the extended family still hasn't come around, and it's caused issues in my boyfriend's family too. 

It's a common issue that many fellow "chronic badasses", as I like to call us, deal with on an all too frequent basis. People think we're lazy, hypochondriacs, attention whores, mentally ill, or something along those lines. I can't speak for us all but I can tell you in my case that I do have my fair share of personality flaws just like anyone else, but I sure as hell am not lazy or any of those other things. Up until 2011, I raved/partied harder than people twice my size, I started working at 15 so I could take care of myself since I grew up a latch key kid - coming home to notes with instructions about how to make dinner for my sisters and I - I commuted/drove all over California, worked as part of a pit crew at Irwindale Speedway, and started getting serious about my journalism/automotive restoration career. And right before I got sick I finally found a job I could picture staying with for more than a few years without getting jaded or bored, as well as getting my shit together as a person enough so that I established my relationship with my current love. 

Why in the fuck would I leave that kind of awesome life to relocate to some po-dunk hick ass town in the middle of Nowhere, Vermont, more than three hours from any major city? Do you know what that does to this city girl? 

Now, don't get me wrong, I'm incredibly grateful for my life, including the challenge that is living with chronic illness. I feel it's made me a stronger, more integrated person, giving me an invaluable perspective on life/our time here on this plane, I've fallen in love with where I live, have definitely benefited from the lower elevation and UV index, and I wouldn't trade my path for anything. I feel I could be of great service by sharing my experiences with others. This is what has helped me to get writing regularly again, after all the pain and grief I've experienced. Still haven't been able to get back on Facebook though, I wonder if my account is even still active? 

And forgive me if I come across as angry. But sometimes a little fire needs to be mixed in. People need to know that they don't know and that is the exact reason they should respect illnesses and disabilities that can't be easily seen or understood. I would never expect someone to understand what it's like to be chronically ill or disabled if they have never faced it themselves. Just like I could never understand what it's like to be in anyone else's shoes. But I respect your story exactly because I could never comprehend it. And all I'm asking for is the same, and it just boggles my mind how rare reciprocity is.

And I'm angry about how illnesses like Fibromyalgia are traditionally diagnosed and managed. The methods employed are about as ass-backwards as leaching or cutting or sprinkling holy water. The drugs used generally aren't very efficacious, tend to have sketchy side effects, and are dangerous when used long term (and these are chronic illnesses, so long term is a part of the picture). I am passionate about sharing my successes using medical cannabis products and other non-traditional plants/drugs and methods like diet/lifestyle changes. Which I will be getting to in more detail as soon as I finish the current series I'm working on. 

So, please, as this week winds to a close, keep the spreading the awareness and compassion for these invisible illnesses. If you know someone who is ill or disabled and don't know what to do or want to understand more, just ask. Or do some quick Google searching. You'd be surprised how many celebrities are affected by these extremely challenging conditions - like Morgan Freeman, Toni Braxton, Janeane Garofalo, and Halle Barry. 

Well, that's all for now. Thank you so much for reading this post! I hope you found it informative and it sparked some curiosity or compassion in you to learn more. 

*Love & Light*

Renata Carmen

Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)