When you have an illness, sometimes you have to be selfish and just focus on yourself. It takes so much energy to try and please everyone else and it’s not worth all the emotional and physical stress. You have to do what’s best for you, even if other people are critical of you or don’t understand. You know your body better than anyone else and you can decide what activities you can and can’t do.
When you get excited cause you’re seeing a new specialist cause they might actually be able to help you, then you realize you should stop kidding yourself cause they’re all as arrogant and inconsiderate as each other.
Today I sold some of my Pay it Forward for ME bracelets at this community sale thingy ma bober. I was trying my best to raise awareness for ME/CFS! People were generally interested in it. Many said “I’ve never heard of this!” and I just told them “Well… it’s pretty similar to MS”
Also a lot of people commented on how “beautiful” I was and that I “looked great”. One person even said I was glowing. It’s kinda amazing what makeup can do. I actually felt like death the entire time because I had been at school all day long. Of course no one could see… stupid invisible illness. If only people knew what was going on inside of my body. I was flattered by the compliments but almost wished that I hadn’t worn makeup so maybe the people could see the bags and dark circles under my eyes.
Anyway, I raised some awareness and informed people who didn’t know about ME/CFS! So mission accomplished. (:
From my personal blog! ^ This is what happened today. I met some really lovely people. <3
Do you see how huge this is? I’m not very good at explaining things, but Obama cares about us. He cares about the funding of this terrible disease. He even refer to CFS as Myagic Encephalomyelitis in his letter! That in itself is huge! It’s a step in getting the name changed! ProHealth’s Rich Carson explaining the importance very well in his letter to the ME/CFS patient.
Courtney Miller’s emotional plea to the president opened the door to change and resulted in two things that ME/CFS patients have never had: respect and validation. President Obama not only took the time to study ME/CFS thoroughly, he proved it by referring to the disease as both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, showing that the highest official in the nation knows that CFS and Myalgic Encephalomyelitis are indeed the same disease.
The President responded by asking the nation’s top health officials to look carefully at ME/CFS to see if the government can do more. And he still wants more feedback. Because of this, patients have the opportunity to be heard by the President of the United States about the disease that has cost us so dearly. We are finally looking at a golden opportunity to right two monstrous wrongs at the same time: to get fair funding, and to change the trivializing, degrading name Chronic Fatigue Syndrome to the medical name that has been used for 60 years in more than 50 countries - Myalgic Encephalomyelitis. It is time for the hurtful, humiliating ‘fatigue’ label disappeared forever.
There you go people! Vote Obama tomorrow if you want to see more funding in the CFS community! I know I’m voting for him!