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Maybe I should just say thank you

Jan 06, 2016 11:37 AM

So..I had someone today tell me ." I must be having a good day". I suppose they say this because I'm up cooking lunch for dad and smiling. I always feel like butt..when I correct them and be like well yeah?? Because the truth is I'm not gonna let my mom and dad starve nkr myself. And my mom has her therapy today and my dad has his nursing visit so there is no time for me to in the bed tending to my pain. I was in a pain sweat as she " the nurse " was saying how good if a day I must be having. And my uncle told me a few days ago how much better I look then I looked last year this time. Now he may have a point this day last year I was in the hospital with pneumonia relapse. And I was there for two weeks. So I could look better now...lol
But mentally I don't feel any better and my pains are worse. Sometimes I wish people could really know.

Jan 06, 2016 11:53 AM

They will continue to say things like that if you aren't completely and brutally honest with them about how you feel. I get this a lot too but I always make a point to tell them that I'm not okay and I explain where and how bad the pain is. It's not good to lead people on thinking you're peachy when on the inside you're screaming. I know with family you want to make them happy, and they will be sad knowing how much pain you are in. I have a a couple people in my life that even when I explain this they still say "But you look so beautiful and you're so young!" Like in some way those things change the pain when it doesn't, if anything it makes it worse because no one (besides my parents) takes me seriously. But really I'm so sorry you have to be cooking when you're in so much pain. I hate those days when I'm left alone at home and have to cook a simple meal because normally I pass out during or after and end up vomitting it up anyways because the pain go out of hand. Moral of the story, if you wish for people to understand you have to make them or you will continue to be frustrated by it. I wish it was easier for us with invisible illnesses to express how we feel but it really is hard. I hope you have a wonderful day even though I know you're in killer pain!

Jan 06, 2016 12:46 PM

Meganblondie... Your right.. Although I'm new to this whole pain world and before I was diagnosis inhad gotten really good at faking..or putting on a good face. But now that the pain has increased and I've gotten more symptoms its getting harder and harder.
However you r right. I am gonna have to start letting people know how I'm really feeling. As for the cooking this is everyday.I moved home to get help and ended up being dubwd the house shopper and cook. I do all the shopping (even though I hallucinate and get dizzy) and I do all the cooking. Everyday. It's awful a d its exhausting.

Jan 06, 2016 2:56 PM

Newfibrogirl, that sounds like a hectic life having to do all that. Please try and stay safe, it would not be good if you passed out while doing any of those things because it can give you more problems than you already have. Maybe you could use a wheelchair so you don't get as dizzy and light headed? Or even a cane sometimes?

Jan 06, 2016 3:05 PM

Meagan.... My aunt has asked me several times if I had cane..I was like ..noooo.. I don't need one. But days like today. Where I can't walk and look up at the same time because the wall in miveinf towards is under water. It makes for a hard day. I've actually put a call in to the doctor today. He gonna call in something for me. But my life is extremely hectic. I'm just now getting my family to accept I'm sick. And the fact that both my parents have illnesses. It's a hard life. But I'm hopeful that GOD has my back.
However I am making moves towards calming my life. Because I'm seeing new symptoms and my pain and the fog is not letting up on me..

Jan 06, 2016 3:12 PM

I understand not wanting to use any sort of crutch! I should've started using a cane back in August 2015 but my pride kept me from doing it until I got worse in November. Now I have to use it around the house and everywhere I go. It's super awkward because no one looks me in the eyes anymore and they all stare at the cane, but it's the only way I can get around now. I'm glad you have faith in God and can trust in what he wants for you, it isn't something I believe in but I know it's a helpful tool to keep motivated. I hope your family can understand what you're going through fully one day! I am hopeful that your meds help you to get some pain relief and you can continue fighting like the strong woman you are!

Jan 06, 2016 3:18 PM

Thanks Meagan.. I appreciate the encouragement. I am trying to stay off the couch as long as I can. Since when I go out now I have to use the electronic carts in large and medium stores. I can walk around small stores as long as I can push the cart. But anything larger I run the risk of falling. Yes..it's happened.. Trust very painful and embarrassing.. Ha.. My faith has helped. But you know what we all have an inner voice and some sort of support. And we are all super women and men..I'm blessed that I have twin uncles with fibromayalgia also so they r helping my mom and dad uunderstand.

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