The room is spinning… I have come to know this particular feeling all too well. As I lay here alone, contemplating whether I’ll make it the twenty feet needed to reach my destination…. the place where everyone has once visited, on this formidable occasion. It compels me to exert every muscle in my torso, as I realize settling for the nearest receptical is all I can possibly muster. It’s disarming… I am completely without control. Something I do not savor, but have heeded to these past years. As quickly as it came on, it was done, although it felt like an eternity within the moment. I feel relieved, yet weak and spent. It’s a remarkable feeling of loneliness, emptiness, and helplessness. Just as I felt some fulfillment, It’s then ripped from my very soul…
That was life for me more often than not. I didn’t know what was really wrong with me back then. Just that I was constantly getting sick, and it was getting worse as the years went by. To go through the majority of your life, knowing something isn’t quite right, is not something you can explain to others. Your Dr’s aren’t telling you anything useful, so how can you make it clear to others around you; children, family, friends?
You start to isolate yourself on occasions, and always have trouble sleeping at night unlike everyone else you know. You have difficulties being a mom, doing mom duties, so people begin to think and believe you are a bad mom. How do you prove them wrong? When you can’t get out of bed to take your kid(s) to school on time, nor pick them up after school promptly. They even have to make themselves a bowl of cereal in the mornings. Because your internal clock is set to be up all night, which leaves you next to lifeless by morning. No matter how hard you try to be a good mom, you are met with an obsticle… an invisible obsticle no less, which you later discover is Fibromyalgia.
As the years go by, you are less and less able to be there for your children. You have to give in and allow them to live with their father and his girlfriend/wife, off and on over 10 years. From the outside looking in… that looks weak, careless, neglectful, less than motherly, and to your children it feels like abandonment! Although you’ve never truly abandoned them… You were always there to pick them up from their dads and drop them off once a week, spend whole summers with them, Holidays, and Birthdays… Only, you were no longer their #1! But, once again you had them back, and while you were able to have them live with you (great job, great husband), super mom kicked in for awhile, and you received an award for you devotion to your children and their school. Then, your husband becomes very ill and dies due to a brain tumor (a year and 3 months later). Your world turns on its end, and you eventually have to let them go, you can’t function, and they are back at their dad’s house. You were close with them… only now you begin to miss out on everything involving them, because of the lack of communication, or none at all, with your ex. You hear about all of the nasty things being said about you while they are at their dads house from various people, including your own children. Even when you try to be the bigger person and not grill them about what they do while they are away from you; like you know is happening to them there… as well as try to refrain from speaking of them (ex and ex’s wife) badly, as they so often have about you. You are Hoping they (your children) will remember that, as you try to keep your witts about you.
Imagining someday when they grow up, you’ll finally know what is truly wrong with you, and you’ll finally be able to explain it to them (your children)… but it takes almost your entire lifetime. They’ve now heard all of those not so wonderful things about you for years! How do you come back from that? You have to hear about how much better they are than you as parents… but if they were truly such great parents, they would have sheilded the children from those horrible words they spoke of you. Made excuses for you, so as to not upset the children, and tried to communicate more freely and peacefully. That is what a good parent would do. But no, that is not what they did, and you were always left to defend yourself against their pointed fingers and harsh words.
Fastforward a few more years… You finally get a diagnosis. All of the pain and suffering you’ve endured over the years can finally be explained! Only, you fear, and then find, that some; especially those against you (ex and ex’s wife)... really don’t want, nor do seem to, believe you. And once again, they say it in your childrens ears…
How do you come back from this! When the majority of your beloved childrens lives have been filled with so many untruths; out and out lies, How? I have just about lost, one of my children to this evil persons words, and my other child has grown into a wonderful, thoughtful man, whom takes the time to listen and understand me and my illness. (Update: that has taken a turn, but hopefully temporary) The worst part is, he may be suffering like I have, with depression, arthritis, and possibly Fibro (if not now, maybe soon). I wouldn’t wish this illness on anyone, especially my children! My other child, ha, when I talk with him, he only asks if he can get what I have; when I tell him I have been recently diagnosed with Rheumatoid Arthritis (he already has Osteoarthritis I believe), and asks what other bad genes I may have passed on to him? Rarely does he ask how I’m doing, and when he does… I sugarcoat it like I’ve learnt to do with everyone, over the years. He’ll ask “Did you get a job yet?” Knowing full well, I can’t work and why. But of course there is that other not so lovely person (ex’s wife), telling him I’m not really sick, for her various ridiculous reasons. Like, because I wore heels and makeup to my sons wedding, that makes me a liar? We were sitting the entire time! Now had I needed to stand for awhile, or walk for a distance, heels would not have been worn, or I’d have a back up pair of flats. We put makeup on to feel normal, it’s our mask(!) to hide behind, so as not to allow others to see our Fibro faces. Is there something wrong with this woman? Hasn’t she talked enough nonsense about me? But then, I have to realize, she’s like so many others… they just do not want to believe, out of their own ignorance, and there’s nothing you can really do about that!
My children will always be just that, my children! And like my eldest, I hope my youngest will grow up and realize that I did the best I could, throughout and after all I’ve been through since childhood… molestation, neglect, emergency c-section, divorce, losing my 2nd husband to a brain tumor (I’m sure I’ve forgotten some things), and of course being ill the entire time, and not knowing why!
My children do not really know me, well, my eldest and I are getting to know each other again, but I’ll always feel the need to have them both on the same page. Someday soon, I hope!
But through all of that, I say this…
I will Not allow Fibromyalgia to define me! …
This is most likely the face I make when someone doesn’t believe Fibromyalgia is real, or that I’m as sick as I say I am. Ha! If you could have only walked in my shoes… you wouldn’t be so smug. This is what we endure constantly!
Fibro has taken so much out of me and from me… But, it will NOT define me!
I know you understand where I’m coming from. So…
Say it with me:
“Fibromyalgia will NOT define me!”
“I will NOT let others opinions and lies effect how I feel about myself!”
“I am here, I am truthful, I am worth loving, I am in pain… and I have Fibromyalgia!”
We cannot allow another’s ignorance towards our invisible illness, bring us to feel badly about ourselves. We are worth more than their mere words. Love yourself! You deserve it! And remember…
You are not alone! Love you all 💜💋 MJ
“The Purple haired FIBRO WARRIOR”
‘FIBRO WARRIOR, My New Normal’
Author: FIBRO WARRIOR, My New Normal
What do you want, when the time comes, and your loved ones have to say good-bye to you?
I would like a DNR to state that, if I’m brain dead, or need machines of any kind to keep me alive for the rest of my life; to donate every viable organ possible once I’m gone, to be cremated instead of buried, a modest funeral if any at all.
What do you want? Does your spouse/significant other, family, or close friends know? And if you don’t have documentation of your decisions, do you think they’ll have the fortitude to carry out your wishes?
Imagine that time being now, and your loved ones can’t come to agree on your departure. Are you married, a fiancée/fiance, a domestic partner, or single, etc. If you’re not married, your partner won’t be able to carry out your wishes, and your parents/family members will be left to decide. Even though you’ve made your wishes clear to your significant other; if they’re not recognized by law, they’ll have no say in the matter. Then will your family’s decision be from the heart or from the head? Will they be swayed by religion? Do they really know and understand what it is you truly desire? It’s a tough subject, I know…
I think about these things because I’m aware of my mortality, now more than ever. Dealing with a debilitating illness does that to you. You fight day in and day out to try and see things through those rose colored glasses so that reality won’t knock you down, as it so often does. I’m not saying I want to live in a fairytale, oh quite the opposite. I’m acutely aware of life’s trials and tribulations and that it is rarely what we dreamed it would be, as we did while we were once young.
Still, I strive to stay as positive as possible and always look for the good in people/things. Only some days are just simply more of a struggle than others. Each day, I put on a smile when I see people, even on my worst days, because I don’t want to bring others down with me, and I definitely do not want to be pitied! But what I do want is to be understood, appreciated, and liked/loved for the person I am, beneath the pain.
*a special nod to my friend “D.” We had this type of conversation recently ♡
Fibromyalgia… I have it, or rather, it has me, depending on the day. I’ve pushed myself too hard all of my life. I was Miss “I’ll do it myself“, if I wanted it done right. So now I pay the price! Oh yes, I also have a serving of arthritis on the side. What they originally thought was only Osteoarthritis, turns out to be Rheumatoid arthritis. Not to mention the list of other issues that seem to come at Fibromyalgia’s becon call. If you don’t know any better, you’ll think you’re that one in a million person, that has completely separate illnesses/diseases/disorders (I did!). But no, they are all Fibro’s gift to us. Kind of like a “Thank you for attending!”, but we aren’t allowed the option to decline the gifts.
Not knowing its exact reason for choosing me (us) is a bit frustrating! I’m able to check all of the boxes…
✔I have had childhood trauma/sexual abuse (a friend of the family).
✔the severe viral illness as a teen (strep throat).
✔the traumatic surgery as a young adult (emergency c-section).
✔the divorce in my twenties (too much to list).
✔the loss of a spouse/loved one in my thirties (brain tumor).
✔having to quit working in my forties (relentless bronchitis).
✔And finally, the complete loss of who I once was (beloved independence)…
And it seems that with each one I checked off, my pain did increase. Isn’t it funny how hindsight works?
Sadly, most of us have had significant others, friends, and/or family members who have left us to fend for ourselves. Because for many, this illness is just too much for them to handle. We only have each other – Fibro Warriors – to look to for love and support. Only a few of us are fortunate enough to have someone who will stick by us through it all. I am able to say that My Love has stood by me; together 10 years now, and I’ve been too ill to work for the last five. We both fight this illness, as well as fight to stay strong together. It can not be one-sided! If you’re not willing to make the effort, it’s that much harder for someone else to fight for/with you. Be the warrior I know you can be! I will proudly stand with you. And on those days you’re struggling, I will still be by your side… ready to lift you up if/when needed.
This is my life, my thoughts, my struggles…
I have more tales of woe. But I’m aware others deal with, or have dealt with, far worse than I, and I’m humbled by that. I’ll share more another day. Until then, always remember…
You are not alone! Love you all 💜💋
*Our podcast is released each Saturday on our ‘FIBRO Warrior, My New Normal’ Facebook page. This week, we discussed My Loves’ perspective on our fight with Fibromyalgia before and after my diagnosis. Thank you for listening, liking, and sharing our weekly podcast/biweekly blog/monthly vlog.
Listen to Fibrowarrior #6 – “My Love” w/guest Bill Jubran by FibroWarrior-My New Normal #np on #SoundCloud
Despite the title, this actually has a positive message.
I’ve struggled with depression almost my entire life. I’ve had to work so hard to stay in the sunlight and avoid the darkness, at all costs…
I am one of those unfortunate people who can not take antidepressants because they actually make me suicidal instead. I’ve hidden my depression from most everyone throughout my life, not wanting to hear the negative comments I’ve so often heard people say about others. Depression has always had a stigma attached to it, so who would want to reveal something that was damaging? Having pain on top of that since my early teens hasn’t made my road easy by any means. I only recently (past 3-4yrs) have been able to be open about my depression/Fibro, as well as my multitude of other health issues. It’s been a long, lonely road… and because I know how truly awful it is to feel so alone, I go out of my way to try and help others to feel more loved and understood. It’s not an easy task to be any one of us here, and to walk in our shoes, of this I am certain. I’m very sensitive on occasions and could cry for the simplest of reasons, yet there’s other times when I know I should be crying, only I feel nothing, just emptiness. It’s such a roller-coaster of emotions!
Today was actually a very tough day for me… but my determination to stay here on this earth for my loved ones keeps me going. That darkness follows me everywhere, just waiting to take over, but not today! I have really amazing things I’m trying to accomplish now by helping others. That’s extremely important to me, so much so that I’m pushing myself harder than ever.
Here is a link to one of our podcasts, where I touch on depression, as well as other things that are connected to Fibromyalgia.
Every day is a battle for me/us (FW) in some form or another, so taking it one day at a time is key.
It’s either the allover pain that can just suddenly take your breath away…
or the need to get up and start your day, but your body just doesn’t feel like cooperating…
or, of course, the depression that sets in for some reason, and sometimes, for no reason at all...
or the need to get anything mentally challenging done, but your brain is on strike…
I could go on… no, seriously, I could. And if you are one of my warriors reading this right now, I know you understand the struggles with living “life” one day at a time. There is no “making plans” in advance, because we have no idea how we’ll be feeling from one day to the next, so we miss out on so much, with our family, our friends. But I’m still fighting… fighting to live, fighting to laugh, fighting to love… and most of all, fighting to be heard! Hear me! I am not well, no, I’m not… but I am here, I am strong, and I am determined to spread #FibromyalgiaAwareness and to retain the belief that we will find a cure someday! I am a 47 year old (48 on March 10th), purple haired Fibro Warrior!
And to those who don’t/won’t/can’t understand us… They can love me or hate me. This is me, and I don’t plan on changing any time soon!
You are my Fibro family, so remember… You are not alone! Love you guys 💜💋
You can find all things ‘FIBRO WARRIOR, My New Normal’ on our new Facebook page: @FIBROWarriorMNN, or contact us by email at: MJfibrowarrior@gmail.com
From left to right: (me) MJ Aragon – podcast host/blogger/vlogger, Tony Jefferies and Jojo Myricks – my producers, and Christy Ortiz – my (occasional) co-host.
My New Normal
Hello, my fellow Fibro Warriors! The post below is what sparked my idea to write a blog, as well as record a podcast ( 3 already) and a vlog to come, all 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, (formerly) my Co-host: Christy Ortiz (had family to attend to), 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 questioned 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 20-30s, 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 and 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 of 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 about 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 learned 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 lifelong 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, 6 years 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. Hopefully, my story will help someone out there in need. I’m here for you. You are not alone! Love you all 💜💋 MJ