To those who are family and friends of Fibromites –
I am a Fibromite. You don’t know me, I hope you allow me this moment to share with you how it feels to be me. I am not here to complain. I am not here to vent. I am here to help you understand.
I have Fibromyalgia.
It is a diagnosis. It is not a life sentence. It does not define me.
When you ask, “How are you?”
My honest answer is, “I am in pain.” but I will no doubt say, “I am fine.”
Look at me. I appear fine on the outside.
Come closer, I walk with a cane. I am in extreme pain. If you talk to me, I have a hard time finding the words to form a sentence at times. My memory, well I don’t rely on it. Look at me.
I struggled for 5 years before I was diagnosed.
5 years. Back doctors, foot doctors, Internal medicine, Scans, X-Rays, doctor visit after doctor visit… and feeling frustrated, alone, helpless, desperate.
What does it Feel Like?
It is different for everyone. My arms and legs are heavy and when I try to move them it’s like they have been beaten to a pulp. They shake at will. My feet at times feel like they are asleep, but multiply that nerve pain x 100. My shoulders and neck are sore, just really super sore – like they are saying “please whatever you do…. don’t move” and the side affects from my meds are making my vision go awry. My jaw is sore. It feels like I went through a cycle in the dryer… got hit by a car… did a flip on a trampoline and landed on cement… I’m thinking you get my drift.
What’s that? You ask if I am available for dinner? When?
I hesitate. Planning is never easy for me. How do I know if that damn flare will appear or not? How many time times have I had to cancel? Too many to count.
Where Am I?
I am home. I like to pretend I am “relaxing”. I sleep and I rest. I am safe at home. I don’t have to pretend I am not in pain or have energy. I don’t have to hold my head up. Sometimes it’s lonely.
“I worry about you”
I hear you. I do not want you to worry about me. I do not want you to feel sorry for me. I want you to support me. Exercise with me. Push me to do the right thing for my health and when I’m down, laugh with me.
All Good Things Come in 3’s
I haven’t met a Fibromite who only has Fibromyalgia. I also have Major Depression and ADD. I have my down days and I feel like someone stole my palm tree away from my beach. I can get distracted while, wait a minute did you see that? I hate taking my meds twice a day… every single flippin’ day. Don’t ask me to do the same thing over and …. oh what a pretty butterfly! I am tellin’ you, what a trio of conditions God has gifted me with!
Although life is not always easy, this is the life I was gifted. I accept it and so must those in my life. I have a great support system and those around me are wonderful.
I hope you have learned something from my thoughts today. Please leave your comments and thank you for stopping by!
This really sums up how all of us feel who have this ridiculous illness. I wonder how they can send people to the moon but can’t figure this one out. I believe a bout of shingles I developed after a traumatic plane mishap is what started my disease. I wonder why my shoulders, flanks and neck hurt so much…..it’s like a burning pain. I have been a bartender in a casino for 13yrs and on some nights there aren’t enough drugs in the world to take away the pain in my body espiecially my upper back and shoulders. I know I can’t work much longer but trying to get disability is such a daunting task and Fibro is just now being recognized as a disability. I have to say that there are people out there who are claiming they have fibro but don’t fit the bill and make others think it’s not as serious as it is because everybody says they have it. If you are working 9 hr days, training with a personal trainer,never home because your running errands…..I’m sorry I can’t believe you, when lifting my head off the pillow takes me 1/2 hour.I don’t think I will ever find love again, why would someone want to share their life with me, not knowing if and when I will be able to function. I would love someone to help with the house cleaning, laundry and yard but for now I pay people to do this which makes it very hard financially. I once was such a vibrant person who loved life, I was a model at 18yrs old and traveled extensively, kept my home meticulous, walked my dog everyday, played tennis, went to the gym and then it all came to a halt. I thought I had AIDS I was tested 3 times before I would believe I didn’t, then I thought Leukemia? Cancer? what the hell is wrong with me???? Are you depressed? yes Goddamit I feel like shit why would I be happy??? But I was happy until I started to feel like shit!!! what’s wrong with all you Dr’s why can’t you figure this out? My God so frustrating. I am going to print this blog and do handouts from now on instead of trying to explain LOL love it.
Thank you for writing this! It made tears come to my eyes. You rock Tamiko. And, so does your doggie :). It’s been so long since I visited, which I must say I have missed your blog, that I forgot how beautiful your four-legged is.
I wish lots and lots of people, family members, friends, etc., would take a little time out of their lives to learn about what their loved one is going through. Letters like this one can only help that wish come true. Thank you again!
Thank you so much for writing and sharing this. So many…actually, a majority of people out there don’t understand, definitely can’t relate and many times don’t believe. Even some doctors…..really don’t understand and therefore don’t believe you or the condition/diagnosis. Many doctors avoid you because they don’t know what t do with you. To the world, I am lazy, unmotivated, selfish, a liar, a hypochindriac, a drug addict, anti-social….often times I feel this way about myself.
But I used to be one of the most productive giving people you would ever meet. My schedule was packed with working long hours, volunteering for mutiple charity organizations, throwing friends and family weddings and birthday parties, taking my dogs to the park, rescuing animals, campaigning to save the environment, running errands for my husband and baking people cookies.
However people seem to have forgotten this and think of me as just someone who is lazy and prefers to “take.”
Family members have suggested it is all in my head….and tell me I should just get off all my meds…..and get a job…
So how do I respond to this? I dont. And haven’t. It is easier for them to judge me and hold me in disdain than it is for them to hear what I have to say, my explnation of my condition…or research fibromyalgia online. Why would any of them do that? If it makes them feel better about themselves to sit in judgement of me….well I figure… let them….. I, too, would do anything…..anything to feel better and not be the way including tradev