- Oct 31, 2016
- DX FIBRO
Hi! I want to communicate with someone who understands fibromyalgia and chronic illness. I have all the diseases that go along with it or are related to it, such as interstitial cystitis. I have been chronically ill for about twenty years. While I have accepted my limitations, one thing I really struggle with still is healthy people may try to help and even succeed at being quite helpful with physical tasks, but they just don't understand what it is to have a painful, exhausting illness 24/7. I feel lonely. It is hard to not have someone who understands to talk to, so that's why I joined. Also to see if I could help others. It is so frustrating to set simple goals for myself and then be so distracted by ongoing pain and fatigue that I forget them. I used to be a straight A student and athlete and musician, but it is so hard to do these things I am failing now at them. My family (husband and 4 kids) are really important me, so I try to prioritize and focus on them with what strength I do have left. It is hard to sacrifice for others acting in pain or fatigue and not be appreciated, because what I did wasn't as hard for a healthy person. I get migraines and I want to listen to my daughter play the piano or my other daughter swim but the slightest loudness hurts my ears and triggers migraines. I also have a tremor and it makes my hands and feet shake so that makes daily tasks harder. I am afraid to ask the doctor for more medicine sometimes because doctors are so hesitant to prescribe pain meds for fear of being seen as a 'pill mill." Other people abuse drugs so those of us who really need them suffer without. I have a really nice doctor right now, and I worry about her getting frustrated that she can't cure me. Anyway, if someone understands any of this please respond. Thank you.