The end of this week was much better than the beginning making me hopeful that my meds will help afterall. Yesterday, I was almost normal! I probably overdid it- playing football with my boys- but it was fun. I didn't do anything else physical so maybe I'll get away with it. Today the upper body is shot and hurts but I have energy so at least there's that.
I went to my brother's Friday to watch my niece cheer and to celebrate my brother's birthday. I have two precious nephews I got to play with and hold and hang out with. My mom was there and my aunt and cousin came the next day. My brother is the best cook in the world and made us grilled oysters and chicken and sausage gumbo and that was wonderful. I wish I went to visit more often, I think my brother and his wife wished I would too, but we're so busy- and I'm so overwhelmed as it is- I can't just escape my responsibilities and go hang out two hours away all the time- I already don't have it together right now.
My oldest brother is coming in with his family for the Thanksgiving week and we're having multiple get togethers. It should be fun and I hope my body cooperates, I have things to cook and bring to all of them.
The husband and I have not been doing that great- I know he's stressed out- and he feels overwhelmed with everything he has to do- and so he resents the hell out of my "sickness"- because he feels like he is doing everything he can do and he can't do any more because I'm not up to it sometimes. I don't have any solutions for that- but some empathy would be nice. He made this comment about us never having sex- which is my complaint- not his- and he said it was hard for him to want to when all I ever do is complain and I seem so unhappy. I think I manage to be pretty cheerful, functional, and have maintained a good sense of humor despite how I feel. He said I needed to see it from his prospective. I thought about it- and I really don't see it. It's like he only wants me to be like some freaking Stepford wife- like his mom was/is- and I can't. I can't fake it, sorry! Maybe if he was rich like his family and I could have the luxury of staying home and taking care of our family I would be naturally more sunny because I wouldn't be so overwhelmed- I don't know. I can only be responsible for my own happiness and do the best I can given what I have and who I am- that's it. Now I'm getting all aggrevated when I was really cheerful when I started!!!!
The husband came home with a red rose for me arranged in a vase. Sweet. I guess he doesn't suck after all. He's being sweet, I really need it. I've been hurting so much lately. My neck is really hurting today- sometimes my hands- behind my eyes. Of course, my shoulders and arms and occaisionally my knee. Is there a part of me that doesn't hurt? nah- some just MORE than others.
Work was rough, I'm tired of explaining or trying to defend myself with my friends at work. Some are supportive, some think taking time off is such a luxury- that they wouldn't do it until the ambulance takes them out, my principal was very kind and completely supportive. She said, Girl, you gotta take care of you, cause there's only one you. I make fun of her and the way she talks- I know- but I really appreciated her sympathy and understanding. My so called best friend at work is the worst! I don't know what her problem is but it's like she doesn't even believe me- that I'm making a big deal out of nothing- she's been giving me a hard time for the last two months because I can't keep it together- she even called me lazy one day. I know I always let her boss me around and say things to me- that were rough but I let it go as jokes- but she's kind of mean spirited sometimes- and I guess maybe we've always been friends because I did what she wanted- because I listened to her- now I don't have time or energy for all of that-
and I certainly don't have the energy to convince her that I'm not feeling well and am suffering with this dreaded "syndrome".
It's really hard for people to understand fibromyalgia- because we have good days and bad days- because we're walking around talking- wearing makeup and cute clothes and smiling despite our pain. They don't see the hours or days we spend in bed with the heating pad, too weak to hold a freaking book to read, they don't feel our pain. We don't limp or speak funny, we don't need surgery or hospitalization really- no meds really help 100% for sure- we an inconsistent bunch of closet sufferers. And one of the worst things- which makes it seem fake too- is what makes us better- no stress, rest, an easier life- that makes it look like we're doing this by choice- unconscious or not.
But as I sit- my arms are tired, my fingers struggle to type, my head hurts, my hip aches, my knee hurts and my neck and shoulders burn and twitch with cramps and my entire body is tired like I just ran 10 miles and I haven't been able to exercise for weeks. This certainly isn't my choice.
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I have slept as much as possible this weekend- last night I woke up three or four times to tinkle- I didn't even drink much yesterday- and I was up at 7ish this morning- rolled around in bed till 8 or so- and now I'm up- achy and weak, dammit. The sleep isn't restorative- the last few weeks- it did seem to help me- to increase my energy when I woke up- even my pain was less- but this weekend has been depressing. I can barely hold my coffee cup. My arms are weak and useless. Yesterday morning even my legs were weak and I've never had that before. I'm achy all over, cold to the bone. I'm bummed out- I needed to feel good this weekend so I could catch up on housework and organizing our shedules and stuff- and now I'm just laying around- too weak to hold up a book to read. I can get a load or two of laundry in- and after resting a while can manage to fold- but the family is going to have to help me out today.
I went to this website with facts about fibro and printed it out, I wanted to have something for family and people to read- so I gave it to the husband and he read over it- and said-well, it certainly seems like you have this- and then he skimmed over all the pages on how to deal with it- to the prognosis- and said- oh- good it says with the right meds and support and a positive outlook-you can get over this- and he handed me back the papers- like- okay- so now be positive and get over it. I just stared at him- he knew he said the wrong thing- I just walked away. I have no one who understands or is with me on this- no one to confide in- no one to discuss my frustrations with. He thinks about money- how much this costs him- and although he has been helping out more- he just wants me to get over it- like it's a phase I'm going through. I wish. I wish it were that easy- I've got no one except my inner voice to guide me and comfort me. I just have to take care of myself and do what I know is best.
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I sure wish that sleep woulsd help it! the fibro has been attacking even more. It didn't help me to show articles and such to my family either, they read only bits and pieces and you are right they think that by sheer will be will be able to somehow break away and no longer be affected by the pain. If we are lucky mabe they will find a cure but first they have to believe it's real.....................Peg






I admire your courage and strength of character. I can only imagine how difficult fibromyalgia can be to deal with.
It is my sincere hope and prayer you find that right combination of meds very soon and that your family become more sensitive and supporting.
Sincerely,
OldChurchGuy
oldchurchguy