Im new here. My name is Linda. Im married with 2 grown children. 1 boy 24, and 1 girl 28.
I drove a special education school bus (28 yrs) and was for several years(when i was young) a teacher's assitant.
I was diagnost with fibromyalgia in 2009. He told me it wouldn't get worst, but it did as i tried to work. I came home after each route and went to bed. I ask myself if this was what my life has turned into. My whole family told me to quit driving, but i was stubborn. The last day of work, i slowly got off the bus. My hips would hardly move and my neck and shoulders had stopped my head from moving side to side. I told my TSA that i may not work tommorrow. I went to the dr the next day, and he again told me to stop driving so i can propperly take my meds. I never took them while i was driving. So we decided i should stop working. It took me about 6-8 months to feel better. I do have my bad days and a few good days. The support from my family has been wonderful, but i still feel alone, if you know what i mean. When they are around, of course i smile and go on, but inside i feel like SCREAMING HEY, ACKNOLIDGE ME. DON"T YOU CARE? I know they do, but i cant help it sometimes. It just feels like the forget. Wow that felt good just telling someone outloud.
Linda, I am glad that you joined our online support community and I hope you soon find the support that you need. I know exactly what you mean when you say you feel alone even with your family around you who do support you. It is not possible for anyone to know what it is like to be in our bodies unless they too live with an invisible chronic illness. At least they don't question you or call you lazy.
But we know what it feels like. That's why we can offer real support. You don't have to try and convince us as to how you feel. We know because we are dealing with the same illness, though not necessarily all the same symptoms.
Didnt sleep well last night even though im on trazadon. It usually works, just had lots of pain last night. Got up stiff as usual. We are having some friends over tonight, so "put on a happy face". LOL!!! Happy Groundhog/superbowl day! Hugs for everyone!!!
Welcome to the group Linda. I’m sure they do care however I’ve noticed that after a while people just continue on with their own lives and in a way you feel like you’ve been abandoned. I first noticed this when I was in my late teens (graduation year) and spent three months in the hospital. My family still came to visit but after about three weeks I no longer heard from school friends. I noticed it again when I was in the hospital for almost 6 months.
I find with my family and friends now they know and accept that I have fibromyalgia and are understanding when I can’t participate in something, however they no longer really think about it. I think part of this is because we put on our “happy face and voice” and as well they can’t really do anything to help us. Occasionally I may tell them I’m having a bad day but most days I do what I need to and don’t complain because I don’t want them to feel miserable or resentful.
On those really bad days I still feel “abandoned” somewhat, but I also tend to cocoon to find peace within myself, and feel guilty about abandoning my husband.
I’m glad you have a supportive family and that you’ve found this site. We do understand your feelings, and are here to help as much as we can. Feel free to vent or ask questions, or just get your ideas or thoughts on paper. I hope you have a good evening with your friends.