The past several months have been an ongoing battle for me and my family. The external stresses and intentional hurt being inflicted on us has been taking its toll on a variety of levels. This May I will have been on chemotherapy for a year to help treat my lupus. At times I feel as though it is helping and at times I feel that the side effects are worse than the disease itself. I have ups and down in my illnesses, mainly driven by the amount of stress occurring in my life. It seems that every time I begin to get a step ahead and feel better, someone or something causes undue stress which leads me into a flare and the cycle starts all over again.
This week has been extremely tasking on me both physically and emotionally. There have been a few wonderful things that have happened, however they were followed by vindictive acts which has me at the beginning stages of a flare.
Many people ask me what lupus is and how it feels. On some levels lupus is very complicated, especially when it is coupled with Lyme disease and other disorders or diseases which is very common. With lupus your body attacks itself thinking its “bad” and therefore igniting a war inside your body. Taking the proper medications (transplant medication and chemotherapy in my case due to the severity) try to trick the body into thinking it’s good instead of bad which doesn’t always work, or if it does can be a short-term solution resulting in a long-term treatment plan, including being on chemotherapy for several years.
As far as how lupus feels, two words come to mind immediately, pain and exhaustion. Some days I feel well enough to function normally, even when I know I should rest. I try to maintain as normal of a life as I can in public, working, running when I’m able, attending events or gatherings. However there are times during those days when I feel like I may collapse or start crying and not be able to stop due to the pain and exhaustion. These moments can come out of nowhere or slowly build over days.
I’m extremely blessed to have an amazing family, incredible children, and a wonderful circle of friends who have been with me during the hardest times, even seeing past the verbal “I’m fine’s” and knowing reality is anything but fine. One thing I still struggle with is understanding how someone could abandon their loved ones during times of pain and illness, to the point of purposely inflicting more harm to make them more sick. Living through this has probably been one of the most difficult things I’ve endured. However sometimes blessings come in disguise.
So through times of pain when we put on our game faces and continue on with life, trying so hard to make sure no one senses or sees the pain or hurt, those days are often the hardest. We can close a door and have our moments of weakness, but never let them see us struggle, even if it leads people to believe we’re not as sick as we truly are. Chronic illness takes its toll not only on the person, but their children, families and friends. The fear alone that they face is often more difficult for them than it is for the person fighting the battle. It’s time for understanding and awareness of lupus, Lyme disease, and so many other chronic illnesses that follow this same pattern. We are all just people trying to get by to the best of our ability without making our struggle more difficult.