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 eternity within the moment. I feel relieved, yet weak and spent. It’s a remarkable feeling of loneliness, emptiness, 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 explain You 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 them (ex and ex’s wife)… they don’t want to, nor do they 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 for the worst) 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 don’t 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 something), 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’