People always ask me how I manage to live in pain nearly every day of my life with two chronic pain conditions. I often tell them that the pain is nothing compared to all the other symptoms and the unpredictability. Some days, it takes a lot out of just to wake up and get out of bed. Getting my children and myself up to start our day is another challenge. Carrying my toddler in and out of his car seat and making into work on time is challenging as well. Compared to what my days are like, the pain is the easiest part.
The fatigue consumes the majority of your days. The brain fog kicks in at the worst possible times. Add the pens and needles poking into your skin and coming from the weirdest places (i.e. what appears to be your kidney location), feeling gross because of how puffy you feel, and the fact that you feel like you weigh three times your normal weight because of the swelling. This morning, I woke up feeling like the tin man from the Wizard of Oz – someone please oil me!
I try to pretend that I am in control and that my conditions are not winning but I am starting to feel that there are not as many victories as there used to be. I hate the weight that I have gained because of my medications and my conditions. I know that regardless how upset I am about how much havoc RA and FMS have brought into my life, I still have a life to live. I take the stiff upper lip and focus on the big picture and the big picture is not about me – it is about my family. Of course, I am scared that I will add another 50-60 pounds to the ones I have already gained. I am also afraid of being disabled and not being a productive member of society. I hate not being able to be active because of how much I hurt and how little energy I have.
In all honestly, I don’t always recognize the person I see in the mirror. I feel cold in an unresponsive and unemotional way. I am numb and sometimes, I just want to feel something and I don’t know how I am supposed to when I have build this wall around me to keep me from hurting. I used to be tough in a much different way because I never used to dwell on things or let things get to me, but these days, all I want is to make it through the day. I want to spend as much time as I can with my children and just be happy and enjoy the little things and the small victories. I have concluded that I can only do so much. I don’t want to give up on my dreams but something tells me that perhaps, I need to put them on hold at least until my kids are older and need me less. If I want to prioritize, then my kids are first priority. I hate that I feel less than good enough to be their mother.
I am so used to always focusing on success and always fighting for that success but I am only human. I want the life that RA and FMS took from me, but since I don’t have choice, I have to learn to choose my battles. I can’t have it all even though I thought that I could in the past, but it took RA and FMS to send me to a screeching halt. I have never had an easy life but the one thing I don’t have is regrets. I don’t regret anything because all of those things led me here to the life that I have now, and it is a life that I am very content with. I understand that RA and FMS wreck havoc on my already busy life, but I also understand that I am not always in control. None of us is in control of our destinies.
There is a Rascal Flatts song called “Here” that stands out for me and reminds that the life that I had before that led me here to the place where I am at today. I wouldn’t change a thing even if I had to go back and relive that life. I don’t have any regrets and that says a lot about my character. I know that lately I am starting to question everything and I know that it is my conditions talking but our bodies tell us when we need to slow down and mine is telling to figure things out. My sister tells me to just get a housekeeper and continue to live my life and keep focusing on my goals. I am only hoping that it can be that simple but when has my life ever been simple?
You still have time to get an entry in for the Open-It Review and Giveaway. Deadline is Tuesday, April 13 at 11:59 pm.