Humans of ME/CFS
I've been sick with ME/CFS now for 25 years. It all started for me with a case of mononucleosis on my 19th birthday back in college. I never felt the same after that.
When I look back through the years, I realize I did learn to pace myself through most things, even though I wasn't fully aware of that right away. Despite being ill, I am grateful that I did receive my bachelor's degree, eventually got married and have a beautiful daughter that truly inspires me every day.
I've learned to prioritize what's most important in my life. Due to the major limitations I have (energy being the most), I am currently a stay-at-home mom. I am very fortunate that I have this as an option. This way, I have more to give to my family with my limitations. I'm lucky to have a kind, supportive husband who helps me out with many daily tasks. Besides being the sole breadwinner of our family, he also cooks and helps out so much with our daughter. I am very grateful and blessed to have my family. They are truly my inspiration and what keeps me going.
It truly has been a daily challenge over the years to try to keep my mind focused on the positive. There are so many times I tend to think "if only" I could work and help out with the finances, play more with my daughter, have a clean house, cook more and the list goes on. I do mourn the loss of my life that could've been if I hadn't been ill all these years with such a misunderstood illness such as ME/CFS. I try not to compare myself to healthy individuals. Some days are easier than others. I didn't ask for this, so I know I shouldn't feel guilty.
I've also learned many things about myself over the years in dealing with ME/CFS. I've learned who I can count on. It seems as more years go on there's less people, but I've accepted that and know that I do have supportive people in my life thankfully. I've learned how to be my own advocate when it comes to taking care of myself (since the majority of medical professionals do not understand ME/CFS or really try to in my experience). I've learned to listen to my body and rest when I need to if I can. Some days are better than others, of course. I've also learned to not care about what other people think. I'm still working on being patient with myself and not feeling guilty about my limits.
Living with ME/CFS has definitely been life-altering in almost every way possible. My greatest wish is that those suffering with ME/CFS get the respect they deserve first from the medical community, along with everyone else. This by far has been the hardest part of living with a devastating illness such as ME/CFS. I'm hopeful this will change.