Hello my fellow Fibro Warriors! The post below is what sparked my idea to write a blog, as well as a podcast (already recorded 3), and a vlog to come, same name). I have Fibromyalgia, along with many other issues attached (like Rheumatoid arthritis, Osteoarthritis, Chronic pain, Migraines, PTSD, ADHD, severe Depression, Allergies-food/eviromental, Vertigo, Tinnitus, etc., the list is long), and I slowly began to share this with my friends on FB, only a few years ago. Just a lil at a time, because I wasn’t sure how well received it would be… worried that it might be a subject people wouldn’t care to hear about, and/or that they may just stop following me altogether. To my surprise, with each post, I received positive feedback, along with private messages, thanking me for sharing, how it helped them get a diagnosis, and how much they related to my story/journey. With each post I’d share a lil more, and this post I’m sharing today, is the one that lead the way to ‘FIBRO WARRIOR, My New Normal’, a podcast I began about 3 weeks ago, as well as this blog, and vlog to come. I have an amazing crew working with me! My Producers: Jojo Myricks and Tony Jefferies, my Co-host: Christy Ortiz, and myself as Host. They are the most supportive and wonderful people, I couldn’t ask for more.
This is my journey, and I want to share it, because it’s important for others like myself to know that “you are not alone!” You can also hear me read the post to follow, on my ‘FIBRO WARRIOR, My New Normal’ podcast Episode #2 subtitled “My Inspiration” on SoundCloud. Episode #1 “Pilot”, is also available, and Episode #3 “Our Existence” is on its way.
So here it is, the FB post that helped spark it all.
I’m having a great day today! You might ask yourself, “Why should we care?” Or “Is she bragging?” Oh, quite the contrary. I’m not on any great adventure, nor am I accomplishing some great feat… What I am doing though, is feeling good about myself, which I don’t do often enough. When you’re dealing with pain, lethargy, depression, and cognitive issues on the daily, life just becomes one big blur, with each day just bleeding into the next. When I’m feeling up to the task, I try to do more than I should; then I inevitably pay for it over the following 3 days or so. It’s a vicious cycle that I’m all too familiar with. Today though, I’m not going to overdo it… Instead, I’m going to take a moment to share a lil about my journey with an invisible illness. This may become lengthy, so if you’re not up for that, you should exit now. You’ve been warned…
Very frequently when you see me, I have a smile on my face; hiding whatever I may actually be feeling on the inside, while trying to enjoy myself, engage in conversations, and make that particular day/night have some meaning, which is not a small task for me. What most people do with ease, I now struggle with more often than not. I’m lucky if I can remember what was said to me a second ago, or if I can get the words out of my mouth, that seem to constantly get stuck in limbo amongst the clutter that is now my mind, or what’s left of it anyhow, and to think I was once fairly smart. I was actually made aware of this fact in 5th grade, when my teacher apologized to me… He had actively put me down, and at the bottom reading level, to make his point. I quickly surpassed all four levels with ease, as well as completing six books ahead of the class. When we received our SAT scores (I believe), I ranked 4th year college level in reading and vocabulary. I was proud, and to my surprise, my teacher pulled me aside and apologized profusely for his injustices. I’ll never truly know why he treated me so poorly at first. Was it seeing a white girl with a Hispanic last name, that may have rubbed him (my white teacher) the wrong way… just a theory of course.
But I digress…
My point is, that now I feel like that fifth grader, before she discovered how smart she really was, and always questioning her self worth. I literally avoid conversations when I’m struggling with cognitive issues. So if I’ve ever seemed distant, this is possibly why.
It’s difficult recalling how I was once a social butterfly during my 20-30’s, putting myself out there and trying to stay in the moment. I miss that lighter, sarcastic, funny girl. Where has she gone, I often wonder? I was successful for the most part, staying positive, allowing myself to enjoy the sunlight and avoiding the “darkness” at all costs; a cloud that has relentlessly follwed me throughout life, and has given me more than my share of angst. But I was strong enough to push through it, not very gracefully at times and always with a few scars to remind me of where I’ve been. Still, I pushed myself to be happy, productive, and to be a good person, mom, sister, daughter, friend, as best I knew how. On the outside looking in, you may have interpreted it differently, and for that I understand and apologize. Things haven’t exactly come easily for me, I’ve worked hard and pushed myself to my absolute limit! Always, always, an uphill battle for me.
Since 3rd grade on, I was constantly involved in some sort of sports or outside activity, unlike anyone else in my family; a bit of a Tomboy. I developed early though, so that wasn’t ideal for someone who does a lot of physical activities. The pain began somewhere between the ages of 12 to 14 yrs old (maybe younger), but still I stayed active. Initially I thought it was growing pains, but my description varied greatly from my friends accounts. I didn’t have a close relationship growing up with my mom and pop (step, but still my pop), so I kept it to myself. Often thinking they’ll assume I’m trying to get out of my multitude of chores anyway. I was a kid, what did I know? Now in hindsight, I realize I should have spoken with them, regardless the outcome. But then, much like now, I’ve kept my pain to myself, not wanting to burden others.
Continuing on as a young adult, out on my own… I would eat healthy, worked out, didn’t smoke or try/do drugs, and if I drank I had water in between drinks to stay hydrated, rarely having more than two. I’ve lived my life pretty healthily. But my body had other ideas in store for me, and no amount of determination on my part, was going to detour my illness from wreaking havoc on my life. So as you now know, Depression/Fibro took ahold of me at a very early age, so my teen years are not looked upon with much fondness of course, nor my childhood for that matter. I’ve always felt a bit of a disconnect from my life/family/friends, as if I don’t belong here, and I always assumed I wouldn’t be long in this life…
It’s easy to go dark, when you’ve lived your life in pain, not wanting to share that darkness, knowing it will scare most people (away), and inevitably cause them to either feel sorry for you, or say that you’re weak and needy, amongst a host of other negative things I’ve heard/endured over the years. None of which you’d hope for, especially when so many of us are uninformed about illnesses like mine. I’ve become accustomed to these types of reactions, and I want you to know that I’m quite the opposite of “Weak!”, because it takes a certain kind of personal strength, to acknowledge your obstacles and overcome them, over and over again. This cycle will never end for me, and my loved ones will have suffered the most because of this. Hence why I’ve chosen to keep them at arms length for the majority of my life. Their having to endure my ups and downs couldn’t have been easy either, not truly knowing what I’ve been living with internally/invisibly. It took me years to begin to share this struggle, without worrying what others may think. This is me! I have honestly done the absolute best I could, although it didn’t always appear that way, I’m aware. Through it all, I’ve learnt one very important thing… to love myself first. Enough so, as to not be ashamed of what I have endured throughout my life… Fibromyalgia/Arthritis/Depression/ADHD. It took almost a lifetime to get my diagnosis for Fibro, which lead me to feel embarrassed and/or like a hypochondriac, as each Doctor (there were many) would tell me they couldn’t “See” or find anything wrong with me. I even gave up for awhile (~6yrs), and only when I lost the ability to hold down my job; because I was chronically sick with bronchitis for almost an entire year, did I go vigorously in search of an answer!
Finally, the relief and disappointment I felt at the moment of my diagnosis…
“You have Fibromyalgia. There is no cure, so this will be a life long illness.” As I watched those words fall from my Doctor’s lips, my heart felt light, then it instantly took on the weight of a boulder. The words “No cure”, kept playing repeatedly in my head. My depression quickly overcame me. The next year of my life suddenly vanished before my very eyes.
Oh how sorry I am for checking out (in a sense), for letting it take me away from those I love. I didn’t want to do anything anymore. I kept getting bad news after bad, from each Dr I saw (11 or 12 in that one year). It was sucking the life out of me, and if it wasn’t for my love for Bill, my two sons, my family, I may have checked out completely. Who knows?
Fastforward, 6yrs later… I’ve come a long way from then, researching and learning how to live in “my new normal.” So, “Today is a great day for me!”, because I can appreciate the sunlight, and my clouds, however briefly, have dissipated. I may not be able to show it always, but my loved ones mean the world to me! Thank you all for being in my life and showing me love through it all!
*Apologies for its length. But hopefully my story will help someone out there in need. I’m here for you. You are not alone! Love you all 💜💋 MJ