No matter what kind of medicine I take, I really have no real quality of life. I (we) can't plan anything because I never know how I will feel. Sometimes I think people think I do this so I'll have an excuse to cancel at the last minute. This just isn't true because I would rather be doing anything, anywhere rather than have fibro.
Sometimes I may not be feeling that bad because I'm afraid I'll get worse and have to make a hastey retreat to get home because my fibro has flared up or CFS unexpectedly falls on me like a ton of bricks.
Instead of going thrpugh all of that, I just tell my husbad to go on ahead without me. At first he wouldn't go without me. Now he goes on and has a good time. Secretly I am so jealous of the people we are supposed to be with because I'm so tired of life just passing me by and being with my own sorry company.
Unfortunately, it sounds very familiar. At first when I read your post I wanted to say you were living in fear of the what if and you needed to go ahead and have fun because what if you didn't have the pain or the fatigue afterwards. What have you missed out on because you didn't do those things with your husband. Then a little voice in my head screamed, hypocrite! Because that is exactly what I do. While I pretend I don't. I work outside the home and have 3 kids with busy lives so I taxi them around in the evenings then on the weekends and nights I'm so tired all I want to do is nothing. Then I feel angry/jealous of my husband that still goes out and does things with his friends. I don't even like to have people over because I know I'm just going to be too tired to deal with entertaining. I feel trapped in a body that doesn't want to move while the "I" in me wants to get out and hang with friends, go for hikes, take my daughter shopping and walk through the mall for hours. Take trips to all the historical places in VA but the reality of it is I do none of that. I don't have lunch with friends, I don't hang out with my friends, I don't plan outings because I'm just to tired and know that I will be tired on the day it arrives. All that being said I think we need to change our thinking and just do it! Go have fun. Get out and move our bodies and have fun. Our bodies might not like it but our brains may love it.
I feel like you read my mind. I have started encouraging my family to do things without me. I am torn between the extreme guilt I feel when I do not do things with them, and the extreme relief I feel when I know I don't have to go! I miss being able to just jump in and go but it just isn't worth it. There are times I force myself to go for something with my kids. I'm willing to pay the price for them but just to make other people (extended family or church members) happy, I am just not doing it anymore.
I would encourage you to do what you think you can and what is most important to you. Someday maybe we can find a balance!
I put this in the chat room, and then remembered how often I walk away and leave the chat thingy open, myself. LOL
Anyhow, I know all too well what you mean! I was only able to work 2-4 hours a day while I was still working, and yet I was still in denial about how bad it was until a) I lost my job and b) DVR said I'm too sick for them to help me (Dep't of Vocational Rehab).
I'd get done with that short amount of work and just collapse into the bed. Couldn't even spend any time with my family. Definitely couldn't _do_ anything with/for my family outside working, which was just stressing us all out even more.
The situation now is abject poverty while I wait for disability, as we're only receiving my other half's disability as income (he's a TBI survivor and his spine is jacked. Industrial accident years ago). BUT in a way, I'm kind of glad I lost the job. It woke me up to how sick I really am, and forced me to accept the fibro (though I still aruge with it often!) and now that 2-4 hours I have in me, I can spend with my family! I'm poor, but my family makes me feel rich!