The Story of ME...CFS

I have suffered many things, but none have been as awful as living a chronic disease. I have withstood many trials in life, but none would prepare me for this pain. I deal with pain every day because I am stuck in a dark place at home. Some might say that it is all in my head. Some might give me a hug and say it is okay. What I do know is that I am proud of ANYONE who has to deal with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This chronic illness has left me trapped in my own body feeling like I have to push or pull the dead weight.

I wake up every day hoping that it will be better, but I end up staying in my bed feeling like an anchor is holding me down. It feels like I have the flu every day of my life. I try to function, but it’s so hard when your body will not cooperate. Every day I tell my body that I will try and will not give up. I push myself to cook, clean, or do other functions. Most days my mission to do these daily tasks fail. I pat myself on the back when I can actually get something done.

The hardest thing in the world for anyone living with a Chronic “Invisible” Illness is that you have no other choice than to be a warrior. You have to overcome negative thoughts no matter how tired you feel, or how much pain you are in. It really is not about yourself. It is about others. It is about living a quality of life that is less likely to be lonely. Without trying to function, it would be impossible. The best thing to do when your body is in a state of illness is to give your mind more power over your body. It doesn’t mean you are going to feel better, but it does mean you refuse to give up!

I decided a long time ago that I would be true to myself and let go of the fear. I had to let go of the fear that I had for failure to succeed. My fears of losing others because I wasn’t good enough anymore. I had to let go of the fears that crippled my way in life. Sure, I was no longer going to have the career that I had, but that did not mean I did not have to stop doing things that I loved. Letting go of the fear will help someone capture the true art of their abilities. I found a strength and talent in myself that nobody could have ever done for me. I used this newfound me to write stories and help others who may need to hear the same message. I make Tik Tok videos when I feel up to it. Of course, I may not have a huge following or many friends, but I let that fear go also. I had to stop living my life as if others were with me. I had to live my life for myself and do whatever it takes to try and survive. Maybe one day my dream will be an inspiration for others. Maybe one day my survival will be the strength for just one person. All I know is that it is never easy to live this life of ME/CFS.

Nothing is normal to me anymore. It takes me hours to get out of bed and do things. I have to prepare if I have an event to attend. I can’t concentrate for too long and my mind is usually in a brain fog. I stopped trying to fit in with the world and I do things that make sense to only me. I know there are friends and family who will never understand, but in the end, I do what makes me happy and comfortable. I cannot rely on the emotions of the world to control and dictate how I feel. I cannot allow it to make me feel like I am wrong. I am in control of my destiny and my destiny is to be happy. Happiness will sometimes mean letting go of the people who no longer serve you well in your life. If you have ME/CFS then that means letting go of most people because most people do not understand it. It's okay. I am okay. I have gotten through this illness and it took me years to adjust.

I cannot make plans because I could be disappointed or disappoint others. Most days I am too tired to pick up the phone and call anybody so I spend most days surfing through my phone on my bed. I write when I feel good enough to sit up. I keep myself occupied through television or movies. I listen to podcasts that inspire me and help me to stay out of negative thinking. I do whatever it takes to make my day better. I try to take my mind out of the state of darkness. I do what I can to brighten my day and make things easier for myself. I will not stay in victim mode too long. I fight every minute. I adjust anything I need to, in order to survive and smile again. I’ve written blogs on my experiences, but I actually enjoy writing short stories much more. There is something fulfilling about being able to create things in your mind and put them into a story. Especially if I am writing the story for inspiration. Hopefully little by little I can finish a book on short stories that I am working on. It will all be fiction but based on real-life traumatic events that I went through.

A person with a chronic illness will most likely struggle with their success. It can be hard to understand why you were chosen to have this illness. It can put someone in a depressive state of mind. It will break the life that you spent so much time building. When you see the old success walking out the door, you realize it was only a temporary success. True success in life will not have conditions or make you feel any other way except happy. Gratitude became a part of my daily success. I needed to appreciate all the small things to enjoy anything extra that came along.

With all the trauma I have been through, which includes a lot, I give myself a pat on the back. I am sober and I am no longer a victim of this world’s definition of happiness. I am a true warrior who fights the same battle every day. I am proud of the woman I have become. It has only refined me as a precious stone turned into a fancy piece of jewelry. I am okay and accept that I may not ever have my old life back. I am okay with dealing with anyone who doesn’t believe or accept my story. I believe in myself and that is all that matters. I will fight every day if I have to. I will continue to try each day and live full to which a person with ME/CFS can only do. It may not be much, but it is enough to keep me going and pass-through this temporary life on earth. A person can choose to be the victim of their circumstances, but we can also choose to take away feeling sorry for what has happened. Life can either take you into the pits of despair or you can take life into the sunshine of hope. I will continue to share my stories. I will keep hoping and fighting until my last dying breath.