How ironic is it that one of my favorite bands is Life of Agony? Never in a million years would I think I would end up living a life of agony. I am not just speaking of the physical pain, but of the emotional pain that goes along with suffering from a chronic illness.
My days are so unpredictable it’s frustrating. One day I am fine, the next four days I can barely move. I have to decide if today is really a day worth taking a shower for because the pain of the water hitting my hypersensitive skin makes it an unbearable task that I now avoid.
I have bouts of guilt for being in pain and barely able to walk one day and then walking fine the next day. People think because I am young I am faking it. I wrestle with my mind because my mind tells me I should be hunched over, limping, using my cane, walker or wheelchair all the time. That I should not take advantage of my good days. Why? Because I crave consistency! For ONCE it would be nice to know what I will consistently be facing.
I look at people who are paralyzed and I know how much they must suffer and struggle being confined to a wheelchair but then my mind starts wandering and I am thinking “Man, at least they know what they are up against everyday. They wake up and they know that their legs will not work that today and every day they will be in a wheelchair, it’s the same thing every day.” Here I am waking up one day where I feel great and in 3 hours I have dislocated 2 joints and have swelling, pain, and aggravation because I can’t even make a plan for the day!
It’s such a roller coaster not knowing what each day, or even each hour will be like. It ruins plans, opportunities and it isolates you. I am confined to my house because I am afraid if I drive too far I will get stuck and not be able to get myself back. I hate being dependent on others for “companionship” but doing things on my own is no longer an option.
I don’t get to have a routine. I don’t get to wake up, hop in the shower, grab a coffee and head off to work. There are days I can’t get out of bed at all. Showers are not always an option, neither is a lot of clothes because of my skin hypersensitivity. I don’t get to have a job outside the home where I can meet with peers for conversation and a salary because lets face it; no respectable establishment wants a naked employee! Some days I wake up and I take a shower, get dressed and clean the house! I hate cleaning but I love when I can run a vacuum or scrub the sink because it’s a little piece of normalcy that I have for the moment!
I get frustrated at people who complain about doing housework, gardening chores etc because they don’t realize how much they’d miss the monotony of chores if the ability to do them was taken away. People think staying home and not working is the greatest thing and I am so lucky. ARE YOU KIDDING ME? I am losing brain cells by the day from boredom. I have no social interaction. I feel useless, unproductive and a burden to my Husband. My OCD and other weird quirky mind games get kicked into high gear because I am stressed out. It really is a miserable existence.
I try to focus on the positives; I have a loving Husband, Mom and dogs! I have great friends to communicate with via Facebook, Skype, Text and phone calls.
I do have good days and I look forward to them.
I am loved and I am blessed.
So my question to you dear fans, how do you feel about your life and the inconsistencies it is riddled with due to the unpredictability of your illnesses? How do you cope? What keeps you “sane”? Please share as your opinion is as important as mine!
I wish you good health!
Peace & Paw Prints!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.