An open letter to my loved ones need to know about life with fibromyalgia.
This letter is pretty spot on……….As I read I wanted to scream that no way this is me! I thought, well ya, this is me, and I have all this stuff but so what. I have lived with it all my life. I’m fine! Then tears began to roll down as I reached the end of the letter. I said to myself… “It is me! FU%^&!!” And all this time and all those 10 years of taking care of my parents would have been so much easier if I had known. And especially if I had known I was not alone in my pain. I would NOT have taken care of my parents the way that I did or AT ALL. I may have some financial stability now or maybe my marriage still in tact. I would not have gone through years of anguish of fighting and stressing and in pain each day wondering how and why was it ALL so damn horrible?!! Why the hell did I lose EVERYTHING? All that time I was simply sick with Fibromyalgia and did not know it. Now I do and crap! I have no body left to say no to. To NOT care for. I am just me now and sick and tired and living with a man that doesn’t really get it. He tries. AND honestly, its ALL OK. I feel safe and that is simply the only thing I care about at this point. I love my environment I have created with all the emotional turmoil, pain and happiness too. I am very grateful for all that I have. I have my birdies that make me smile, a nice home I live in and a pretty silly fun dude I adore to spend time with. I am very lucky!
Gosh even my kitties are now dead. My babies I loved so much. Well, no need to worry about not seeing them any more. Yes, that is sad, but I can’t afford to feel loss any more. Takes all my energy. Now I know why I was so sick around my sweet kitties. Good to know. Shoot! Now I know the most of the why for just about everything that sucked in the past. And no place to put those answers except for in my writings.
My 4 books in my head that I have begun to put on paper are going to share a lot of my 10 years caring for my folks and I am sincerely excited about that. I felt concerned that even my story may suffer now because I was not like everyone else but I can incorporate a physical challenge because most all of us have a demon we live with, be it emotional or physical or both. The outline is formed and honestly, I don’t care what people will think of me if they read my story. It will be pretty intense and personal. I only have me to worry about now and I am NOT afraid to express myself at all!
Don’t mess with me!! I am a WARRIOR! I am stronger than any person I know because I survived NOT knowing for so long. I conquered terrible events and put myself in this place I am in now with all needs met to write my story. This way, maybe, some of the crap of the past won’t be of a total loss and I can help someone not go through what I did. Who knows…. I know if I don’t write it, there is not a chance to help someone else. So I have to.
Dear Loved Ones,
I want to share something important about my life with fibromyalgia. You may see me smiling, talking, and doing normal things, but you may not see the pain, exhaustion, and struggles happening inside.
Fibromyalgia is not just “being tired” or having a few aches and pains. It is a real condition that can affect my body, my energy, my sleep, my memory, and my emotions.
Some days I may look fine but still be fighting through pain. Some days getting out of bed, completing simple tasks, or staying focused can feel like a huge challenge.
Please understand that when I say “I’m tired,” it is not ordinary tiredness. It is a deep exhaustion that rest does not always fix.
When I cancel plans, need extra rest, or cannot do things the way I used to, it does not mean I don’t care. It means my body is asking for kindness and patience.
I don’t need pity. I need understanding, support, and love. A kind word, a little patience, and someone who believes me can make a big difference.
Please remember that fibromyalgia does not define who I am. I am still the same person with dreams, feelings, and hopes. I am learning to live my life in a different way, one day at a time.
Thank you for standing beside me, listening to me, and loving me through the difficult days.
With love,
A Fibromyalgia Warrior
