First Steps

Exploring the world through caring thoughts, the freedoms of guilt free emotions, and looking at the world through the eyes of someone elses perspective seeking to enhance and set free your soul by opening your heart and mind

The GOOD,the BAD, and … The INVISABLE

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butterfly 1

 

” Your to young. ” Your to young to have any issues or problems.” Your way to young to feel like this.”

If your like me, many more times you care to count, you have been shoved to the back burner and ignored. Many different Dr trips, $$$,  and lets not forget the years of feeling like a guinea pig or lab rat! The slew of tests that you have undergone only to be labelled to have the dreaded silent disease….Fibromyalgia!

Its that wonderful silent disease that at first I shrugged it off, in much denial that there was no way that I could have that. I thought it was stupid, and the Dr ignorant for labelling me as such. I honestly thought 10 years ago that I needed a second opinion, then a finally admitted to it with haste, on my 3rd and final attempt to figure out what the hell was going on with me.cant remeberMost days I really thought that I wanted to die from exhaustion and just was desperate to get some from of relief. That came after I sought out a pain specialist, but I soon learned that nobody really knew anything and I was on my own. I felt isolated, abandoned by my PEERS, and Dr’s, and wanted to just give up and throw in the towel.

Since my first diagnosis 10 years ago (which I go by the last one really 8 yrs) I have learned more about myself in this last year alone then with any Dr help. I decided to research on my own, trial and error of course, and I also used Homeopathic treatments at home! I changed my diet, and reminded myself, that even if I didn’t feel well today, tomorrow was another day and I would try again then.

Weather plays a huge role in my health, as does activity, and over excursion. I really have to use a cane some days, and park in the handicap with my placard when I need to. Some days, when the fatigue hits so hard and I’m loosing that battle, I cant do much, sometimes not even dress. Thank God for my loving husband, he helps when I break down and ask for help. I really do try to be self sufficient and not bother many people.

Let me look good poem copy

However, sometimes, I just want to scream and tell people to “STOP judging me, and accept me for who I am!!!”  Or, “just let me not be fake today to spare YOUR feelings”……”I’m sorry it makes YOU uncomfortable that I hurt!!! ” Geesh! The big one for me is….” You look good today….yeah, um, that doesn’t mean I’m cured!!!!” or….” I don’t understand how one day you can deal with it, and the next your down.” Another….” How is it that your fine then boom your down…makes me wonder” All cruel in my book. As if we …..the carriers and victims of this horrible disease….. “CHOOSE” when and where it will strike or how badly. AS if “WE” are lying and playing some sort of sick twisted game to gain attention.

There is so much pressure already mounted there for most of us with debilitating diseases. Our days are so much different than that of most. In some cases, (speaking for myself) I have had to cancel plans or not make any because I have went from Good, Bad, ….to……OMG WHAT THE HELL????? and honestly that can be 2 minutes later and I’m down.

I get stressed out easier due to the pain. Its overwhelming at times, and it sucks to be stuck in your head a lot and not have a way out!!! Brain fog is another for me…..I am an intelligent woman. However, now I question myself. I forget what I was going from one room to the next to retrieve, or memory issues. The compilation of sleepless nights, and fatigued days get strung together sometimes and I forget to be strong and pull it together…..hey, we are only human right. Some days, a heater blanket, another blanket, sweats and heavy socks still don’t help.

Not sure about anyone else out there, but now I’m loosing my hair. The top is becoming rather thin, eyebrows little to now…have to pencil them in, and I have noticed changes in my facial structure. My tummy is sensitive, my sleep is completely  hacked and inconsistent. So much going on, and I hate the fact that I have NO CONTROL over it. It is a creeper……it sneaks up on you without warning like a tiger to its prey and pounces on you out of nowhere!!!! It takes you down quickly and there is no use in fighting, it only makes it worse. Some days, I admit, I succumb to its evil thirst to ruin my life!!! I have learned NOT to feel ashamed or bad for who I am and what’s happening to me. Its not my fault, I have no control. I just decided to take it one day at a time!!!

keep calm

   Its become a humbling experience to not be able to use my hands sometimes, not being able to open a cereal box for my grandkids, or a can with an opening, last night, not even a wrapper. Small things I guess we all take for granted. Its also been humbling for me to look at the broader picture…..The way I see it, EVERYONE is dealing with something. I’m not asking for special treatment. I am aware there are worse off people in this world. I guess what I’m saying is…..I know that there are more like me out there. We are NOT alone. Some day we hope to have a cure for this disease and hope that more support groups, and education for this will come around. Its hard enough to have this going on….and in most cases, its not just Fibro that we are dealing with, it is compiled with other issues that can make it worse and drive you to the brink of madness!!!

I ask that you look into it, research it. More and more people are being diagnosed with this nasty thing but there is limited education, experience, and / or knowledge pertaining to the in’s and out’s of the HOW To’s. I am asking that the next time you see a person struggling, stop and ask if they need help, assist them, don’t judge someone for using a handicap that you cant see….that person just may be me. Show your support, show your love for your fellow Fibro’s out there and together we can start to make a difference in the cure so we can live the lives we were ALWAYS meant to be living!!!!

Something Purple fibromyalgia awareness dayLet me see your Purple shine!!!

For all of the Fibro’s out there, and ANYONE who is suffering silently, I wish for you comfort, and relief. I wish that your body and spirit stay strong and that you take comfort in knowing that your not alone out there. Take comfort in knowing that they are trying to bring in more Dr’s, more education nationwide. Take comfort in knowing that you are the boss and ruler of you and your body today and always!!! Advocate for yourself, nobody else will! Take a stand, be strong, and take all the time you need!! Don’t feel foolish doing research and trying new things. If something works for you, listen to your body….you know best…after all it IS YOUR body!!! I hope this helps, I know that today I was having a hard time, but I thought about it, and wanted to bring comfort nd encouragement to those that might not be having a great day either!

Fly high butterflies……fly high!!!

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