Not Quite Publishable (and yes there are spelling errors)
My very rough introduction into blog I am in the process of developing. I haven't quite got into the writing mode for this specific topic yet but wanted to spew out a few thoughts-for mere personal sel-motivation while I was here. So here goes, from the hip.
Being a Buzzkill
Hate to be a buzzkill but I'll be focusing on my recent diagnosis with fibromyalgia. I am 32 years old, newlywed and very active having grown up on the ocean and now residing in ski town. I plan on discussing my frustrations for feeling "limits" for the first time in my life, yet in contrast I see a bright light marking a new and promising path for myself, my family and my future. It is my hope that my blog, inspired by others with this enigmatic syndrome, not medically worthy yet of being termed a disease, will get fellow sufferers to realize their potential despite the physical pain from this constant everyday nagging malady.
I have never experienced such self-doubt and confusion, hopelessness and utter frustration than in the past weeks since the F word came from my physician's mouth. Fibro is a powerful term, and mentally can tweak and twist your focus and those things that can fuel you to get through an every day. I never imagined I would succumb to the qualification of the term, but I did.
Today and the rest of my every days will be whole heartedly committed to one thing, never qualifying Fibro as a weakness again. I am who I have made, I control my will and my actions, and although my days may feel weary and painful, my passion stays on track.
Not Giving In Mentally
I hope this gives anyone, a glimpse of hope of the possibility. I am exactly one month diganosed today. Sadly, I believe I lost 30 days of my life to feeling sorry for myself and my livelihood overshadowed by a term or condition. 30 days I will not get back. 30 days of allowing myself to give in.
Life is ful of surprises, and Fibro is nothing less. Its a predicament that will shape my every decision and my body will have to carry for the rest of my days. But it is manageable, it is not defeat, it is forgiving with the right choices and living with the appropriate conviction.
It is time to strive for the positive, to focus on the good. To shake off the migraines, the numb limbs, the daunting viral attacks, the constant pains, the capability of being able to be touched...all these things deserve a moment of respect and they exist to a debilitating degree that can break an individual down and changes the course of one's life.
But they aren't worth my tears.
They are however very real. They are mine. I will own them. I will carry them, everyday. And I will succeed and be happy and continue to be healthy and active and live.
Complete Loss of My Everything
In last year, I have watched, literally watched myself, fall down. A pathetic display of the malady in action and at full speed, every week and month past getting worse taking new shape and new forms, anxiety attacks to weekly debilitating migraines, to pain so bad and a soreness so sensitive, the tiniest acts of every day tasks humbled me-floored me, threw me down and pummeled the life from me. I developed every syndrome associated with this stupid condition imagineable, to a point I was taken in at my place of employment because they were concerened about my mental health. This was all pre-diagnosis, and myself and others thought I had a spine problem, from over zealous and overly greedy physicians reading whatever they could into a perfectly healthy series of MRIs and scans. My entire body was shutting down, despite my perfect levels and attributes in blood tests, heart rate, etc., the core of this young woman's operating system was plummeting, and I watched myself lose control very slowly, very painfully, for nearly 12 long months. And by month 8, I had lost all self confidence, chaulked up my symptoms and emotional despair, my anxiety attacks, my need to NOT be touched by my new husband because it literall hurt the surface of my skin and made we want to punch at him...I gave in to it all and believed I was losing my mind. Everything I had accomlished professionally, was being questioned, concern for me completing the simplest tasks was the elephant in the room. My husband was gone for weeks working, while I sustained the home, worked endless hours trying to stay on track and kept up, but I was flailing. I lost.
The Doctor Game
This game sucks, but its what everyone with anything ailing them has to go through.Unfortunately for those in the middle of this long and expensive process its inavoidable and sadly US Healthcare is all we have. For me, I embrace it, because I think it took myself just as long to put it together as it did the multitude of specialists I saw. First thinking I had spine related issues, to being dx'ed with radiculopathy, to a musclar problem that should have a "quick fix" with botox injectiosn (WTH?) to finally, nearly $5000 later in 6 months, a proper diagnosis of FM. Once I fell into good hands it all made sense, but its an expensive, emotional process that had me questioning my pain, my mental and emotional health. Not to mention, thrust me into a world of prescription drugs and fear I would "hurt myself" from misdiagonises. Regardless its inevitable.
LYING
It's all you do when you hit the massive ultimate Flare-Up. You lie down, a lot. One the couch, in your bed, on the floor stretching. growing restless with every passing day. But you're healing. So do it.
BUT make certain you are not LYING to yourself. Pay attention to everything, be honest with your goals and realistic, Include your partner and physician/family's thoughts.
You are lying to yourself if you think you can do everything. I am learning this slowly. I can't do everything, at least not at all once, not right now. I can lie down, and rest and conjure and plan and ultimately conquer. And I will. In good time.
I have every intention of continuing the things I love and living and adventurous and active life, running my own business and having a familywho strugle to keep up with me!
I will not be calling in fibro at 32.
An honest depiction of life after the diagnosis
- Jilly
- This is a very personal record of my journey into the world of Chronic Illness and Disease. I was diagnosed with Fibromyalgia at 31. In the course of 6 weeks following my diagnosis, I lost my job, my independence and my ability to live a life without limits. It is my hope this blog will provide some comfort for many of you suffering from this disease. I'm not the "Golden Girl" for Fibro. I'm not that strong. I simply look forward to honestly sharing the peaks and valleys of my journey with anyone willing to listen.
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These are my words, my thoughts, and my feelings. Publishing these on any source other than this site is prohibited. You may make reference to content found in this blog by marking it's source, linking to this web address, and quoting the content accurately. Thanks!
Disclaimer
I am not a medical professional and this blog is not intended to be received as giving medical advice. I simply am documenting my personal experiences living with Fibromyalgia. It is for entertainment and informational purposes only.
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Jilly | January 27, 2012 at 7:10 PM
I'd like everyone to notice how naive I was at this point. I wish I could put on a tough face and say what every tough cookie should, "i will not be defined by my illness." But I am. And I am not as strong as I painted myself. But how was I to know the months to come. The panic disorder, the agoraphobia, the night sweats, the tearing, throbbing burning pain. I was only getting a glimpse of the disease. It is valiant and honorable to be strong and smug at a weakness, but it is ignorant and a lie to pretend it does not define you. If you are not defined by it, why do you mention ever having it? Why does a stigma exist for us to put on a tough face? Isn't it the ignoring the signals from our body what helped this disease develop and manifest into our being? Embrace and acknowledge the pain, the weakness and the shittiness of this disease. And keep striving to be better than it. But don't deny the gravity and grief it causes and inflicts in your life. Listen to your body and learn and be stronger, in a different and new way.