By Carlene Wooddell
When you have a chronic illness as I do, you can become highly skilled in showing fake smiles and letting the world think you are perfectly okay with your pain levels. The reality is that even your own family members have no idea how bad it gets because you tire of always being a burden.
When I first received my diagnosis of Fibromyalgia, I was elated to know there was a ‘name’ for why I felt so poorly, all the time. I could rejoice it wasn’t “in my head” as so many medical professionals had made me believe. I really did think I was going crazy.
I soon learned there was no cure or a known cause for this dreaded disorder. There were many theories at the time, but no concrete evidence.
When you have an illness/disease/disorder that is lifelong, you eventually adapt to the way of life that works for you. What works for everyone, may not be how it looks in your life.
Fibromylagia is an Autoimmune disorder that already weakens the immune system so any illness that happens really can shut you down, where staying in the bed is the only option and even getting up to use the bathroom is painful. When my body gets any type of infection, it is debilitating to me for long periods of time. And if I am not careful, I end up in the hospital, hooked up to monitors and bags of I.V. fluids hanging and fluids and antibiotics being “pushed” to try to fight the infection. Last June (2019), I had a very serious infection that nearly sidelined me for life.
I had a skin infection that worsened within a short period of time, caused my system to go into severe septic shock and my body was in fight or flight mode. Do or die mode.
Sepsis has changed me. Forever. The calm facade I used to wear and make believable to family and friends is gone. The peacefulness I carried in my soul, is in hiding, anxiety taking its place. Panic attacks, which at one time I thought were a farce, I am finding out are a very real thing. And my mind has been affected and I am really struggling with this one. I remember things from years ago, but if you told me something 5 minutes ago, I don’t recall it. I have to write almost everything down now. Keeping track of appointments and phone numbers is a skill that didn’t need a calendar or note pad but now everything needs repeated and written, or it’s gone.
I want to go back to my fake smile; I’m doing okay mode; I was in control then. I would only allow people that were close and people I trusted to know how I felt, now everybody knows because I don’t know how to hide it anymore. And I don’t want people’s pity or sympathy, I just want them to know that I am doing the best I can, at the moment to hold it together and live my life with the people I love.