Hello everyone! Thanks for checking out my latest blog post. My apologies that I haven’t been writing more, it’s been a great struggle for me. But I do plan on being here more often, sharing information from my journey that I hope will help others in similar situations. Hope you had a great Holiday and New Year surrounded by loved ones and delicious foods!
I’ve realized that I’ve not yet discussed my chronic illness in detail, so I would like to take some time to talk about that today.
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WTF is Fibromyalgia?
Before the decline in my health in 2011, I’d never even heard of Fibromyalgia, nonetheless knew anything about this debilitating chronic illness. I didn’t even really understand what a chronic illness is. I guess it’s one of those things that you couldn’t possibly comprehend unless you’ve experienced it personally, but as a writer I’m compelled to try and describe it so that those lucky enough to not know firsthand may understand, or at least get as close as they can to understanding, what it’s like to not be well, indefinitely.
A “chronic illness” is defined by The Center for Managing Chronic Disease as “a long lasting condition that can be controlled but not cured.” Examples of chronic illnesses that are probably more familiar are allergies, asthma, epilepsy, and diabetes.
Fibromyalgia is defined by The Mayo Clinic as “a disorder characterized by widespread musculoskeletal pain, accompanied by fatigue, sleep, memory, and mood issues.”
If it sounds vague, that’s because it is. Fibro, like many immune or central nervous system (CNS) mediated syndromes and diseases, is poorly understood. The mechanisms of action and onset haven't yet been fully identified. It does not show up on labs and this makes it a huge PITA to diagnose. The current theory is that something is wrong with the part of the brain that processes pain signals, like having the volume knob on an amplifier cranked up to “11” at all times.
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| "But, it goes to eleven." |
Onset does seem to be “triggered” by a traumatic event or period of stress, such as major surgery, pregnancy/childbirth, or infection. Another interesting fun fact is that Fibro and the rest of the Immune/CNS illnesses are about 9 times more prevalent in women than in men. So hormones seem to play a role in this as well. It's a great medical mystery that I've become mildly obsessed with.
We could read medical definitions ‘til the cows come home, but they don’t do a good job painting a picture about what the person affected is feeling or how their life is impacted.
So this is Fibromyalgia in my own words.
It’s been very painful to write these concepts down, and even more difficult to share them, but I know it’s pertinent to the grieving process to get this stuff out. I think partly what’s held me back from sharing these gritty details, is not just because it’s uncomfortable, but also because I don’t want to be defined by my illness. I don’t want to be looked at as “that sick girl”, the person who is always talking about their diet or meds or symptoms or whatnot. I don't want to make others uncomfortable or scared by being honest about how I feel. I don’t want people to see me coming and duck for cover out of fear they will get cornered by a health related lecture or seemingly endless complaints about my latest aches and pains.
But I do feel that it’s important to “come out of the closet”, so to speak. Us sick people need to share so that others know they’re not alone. And maybe by describing my experience I can help those not directly impacted understand these “invisible illnesses” a little better.
I do not share this out of a desire for pity, but in the hopes of educating and inspiring :)
FIBROMYALGIA IS...
...Insidious and mostly invisible, like a slow poison. Confusing because it's different from day to day and person to person. Sometimes I need a cane, sometimes I don't. Sometimes I have the energy to do things on my own, and sometimes I don't. Making plans can be difficult because it's hard to predict how I'll be feeling in the future.
...People telling you “But you don’t look sick!” or "I wish I were as skinny as you!" thinking they’re being helpful when actually they’re discounting your experience.
...Being undiagnosed for three years. Looking for answers for three years. Doing all manner of tests and bouncing from specialist to specialist to specialist. Hemorrhaging money to try and figure things out. Being told you’re not sick, you’re making it up, you’re a hypochondriac, you’re sensitive, you’re mentally ill.
...Going from an overtime working, SoCal commuting, hardcore raving and clubbing, race car fixing, beach combing, social butterfly, to a homebound hermit who can no longer stomach the facades of Facebook, in less than three years.
...Having a timeline for your life: “Before I Got Sick” and “After I Got Sick”.
...Changes in the way my brain works that adversely affect creativity, memory, and the ability to focus, solve problems, and communicate. Writing used to flow out of me like water, now I struggle to squeeze it out drops at a time. I’ve become much more image based and thus am developing a newfound love of the visual arts. I’ve also become incredibly self-conscious about social interaction.
...Being a half Mexican from L.A. who has become extremely limited in where I can choose to live or travel because of debilitating sensitivities to UV rays and fluctuations in Barometric Pressure. A Mexican, sensitive to the sun!?! WTF?
...Missing sunbathing like a bird with clipped wings misses flying.
...No longer being able to work or be self-sufficient, but not qualifying for SSI/SSDI, and feeling like a burden to your loved ones as a result.
...Not being able to remember anything like I used to! Important dates, what time it is even though I just looked, what I came into this room to do (or was it to get something or tell somebody something?), how to spell words I never struggled to spell before, if I left the stove on, if I’ve told you this story already, if I’ve taken my supplements today.
...PAIN. Indefinitely. With an opiate allergy. Threatening to drive you mad. Affecting the positions you use when trying to sleep. Stabbing. Throbbing. Aching. Burning. In my gut and abdomen. In my muscles. In my tendons. In my nerve endings. In my joints. In the bottoms of my feet. In my head. In my eyes. When I menstruate or ovulate. Sometimes it’s just one body part that’s bothering me, other times it’s everything at once.
...Struggling to eat/maintain a healthy weight, and feeling nauseous and sick most of the time, like a nuclear bomb went off in my gut.
...Feeling trapped inside my own body. Like my body has betrayed me.
...Feeling like my life has been flipped upside-down, like I don’t have control over anything.
...Feeling misunderstood by everyone, including family, and struggling to express myself properly so they can understand better.
...Mind-blowing insomnia, like trying to sleep while buzzing off stimulatory drugs, mixed with extreme hypersomnia that makes me feel like a sloth with narcolepsy.
...Feeling like I have the stamina and vitality of a frail 95 year old woman carrying a 50 pound pack of lead.
...Feeling like I’m on a roller coaster I can’t get off of when my vertigo kicks in.
...Feeling like I’m a rusted Tin Man from The Wizard of Oz when I’ve pushed too far and my chronic fatigue, inflammation, and arthritis kick into overdrive, making it difficult to move or walk.
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| Good friends are always there to help get you unstuck :) |
...Losing Confidence: to go for drives, trips, or run errands by myself; to have conversations; to keep up on bills; to be an independent adult.
...STRESS: Over money. Over my health. Over where I live vs. where I want to be. Over safe access to medicinal cannabis and other plant medicines. Over what people think. Over the lack of a light at the end of the tunnel.
...Desperately struggling to accept “a new normal”, while being tortured by dreams in my sleep of “my old life, the way things used to be”.
...Losing pigment in my skin, and getting random rashes and itchy feelings everywhere.
...Having half as much hair on my head as I did before 2011.
...Having your joints lock up on you and creak like an old haunted house.
...Only having about 4-6 hours in each day I can be active before I burn out and need rest, usually for the rest of the day.
...Being best friends with a cat.
...Trying to pick up the pieces and figure out what’s next.
...Needing weeks to put together a measly blog post :/
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| That was a lot of some pretty heavy shit, so here's an adorable pic of my cat Freya to perk us up :) |
*Whew*
That was some pretty heavy stuff. Hopefully educational though.
I must confess it does feel good to finally be talking openly about my life as a chronically ill person.
On to the “inspirational” part...
I would like to also include some positive things that have come out of this experience. Learning to cultivate an “Attitude of Gratitude” has become a vital part of my “Wellness Action Plan”. I cannot cure Fibromyalgia, but I can choose to not let it beat me down or ruin my life. I don’t have to quit, I don’t have to accept “no” or “you can’t”. I can still live a fulfilling and beautiful life!
FIBROMYALGIA HAS GIVEN ME:
...An opportunity to get to know myself intimately, becoming a stronger and more integrated person everyday.
...Exposure to industries, people, and ideas I probably wouldn’t have otherwise: Medical Cannabis and other Plant Medicines, Natural and Alternative Medicine, Herbalism, Neurochemistry and Pharmacology, Shamanism, Eastern Philosophy, Psychology, Personal Development, Alternative Spiritual Paths that truly resonate with me, Comedy and the healing power of Laughter, Alan Watts, Sasha and Ann Shulgin, Terence and Dennis McKenna, Carl Jung, Jim Rohn, Darren Hardy.
...Liberation from being overly attached to society and fear - fear of death, fear of being able to keep up with The Jones’s, fear of complying with the Status Quo, fear of consciousness exploration, fear of pain.
...An opportunity to contribute to causes far greater than my previous pursuits and truly serve others.
...A strengthened and enriching bond with my super amazing boyfriend/hetero-life-partner.
...A healthier perspective on life - “how to be truly present”, how to be grateful for all the little things we take for granted - the time we’ve been given in this life, being able to see, hear, speak, walk, taste, smell, stand in the sunshine, make love, give love, create, destroy.
...The empowerment to believe in myself and take 100% responsibility for everything in my life.
...The opportunity to learn that I can overcome any obstacle, especially the greatest of all: Those that reside in my own head.
Thanks for taking the time to read this super-duper long post!
I hope you found it informative and inspiring :)
What are some tools you use to overcome your circumstances?
What are you grateful for in the midst of any challenges you face?
*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! :)
