The following may contain reality and actual feelings! Reader supervision is advised.🎗🎗
Living with a chronic, debilitating illness is one of the hardest things someone has to deal with. What's even harder though, is the illusion of a normal able bodied person to everyone else. This is true for any person living with illness of any kind. If they say everything is great, never better, I don't need help, I got it...9 out of 10 times it's an outright lie!😮
Yes we are huge liars. We lie for the good of everyone else. We lie to keep our children from worrying about us. We lie to make our families feel a little more comfortable with the fact that you are alone in the house. We lie to be less of a burden on the ones we love. It's no joke, we are pathological liars people!
Makeup and a smile can hide a multitude of sins...but not the eyes. Look at the eyes, the smile may fool you but the eyes won't! Oh and another thing we are great at is keeping secrets and hiding things. We won't tell you how many times we cry, scream and yell when we're alone. We won't tell you about every fall we take, if we tell you at all. We never get hurt from the falls, and will hide any pain. Our most spectacular illusion of all is not looking sick to everyone.
That being said I will continue with my story. I get up everyday, wake up the boys and get them ready for grandpa to take them to school. After they leave I go back to bed because I am forever tired and my body doesn't want to cooperate. To get into my bed I have to lift my right leg up onto the bed with my arm. Sometimes this takes a few tries.
Now that I'm ready to get up and be productive, I push my right leg off the bed, swing my body around lay on my belly and slide onto my feet, grab my walker and go on my merry way. Standing to cook, clean etc is very carefully choreographed. There has to be something sturdy within 2 steps of me at all times. I lean on the counter or sit on a stool to cook. I have become the queen of vacuuming from a chair, ottoman, or walker. The bathroom thank god is small enough to sit on my stool and clean everything without having to get up often. If I'm feeling extra spunky I'll lean on the counter and unload and load the dishwasher.
Thank the lord for my husband. The man works 60 hours a week, comes home and does the rest of the vacuuming I couldn't do, helps change sheets, does laundry on the weekends, does the dishes I was too tired to get to, oh and he takes out the garbage too! I thank God for my sisters because without them I would never get clean, my kids get to be kids and I have a handful of "SUBER" drivers at my disposal because I can't do that anymore either. If it weren't for grandma and grandpa the boys wouldn't get to and from school. My brother and sister in law make sure they get haircuts so they don't look like the animals they sometimes act like.
It takes a village to raise a Susan!😂
I can't work anymore and that has put a huge financial strain on us so I searched and finally found a business I can work from home. I feel like a productive member of society and the family again. It gives me something to do that I don't need help doing.
Losing independence is the worst thing that can happen to a person, young or old. Being sick, trying to keep up the smoke and mirrors, refusing to ask for help is both physically and most definitely mentally draining. We will always try to make everyone think we are doing well and we are happy but just know that 75% of the time we are holding a half empty glass pretending it's full.
Every once in a while you need to show you are human and release the pressure. I write, this is how I deal. I love, this is how I deal. I thank God every day I wake up, this is how I deal. I laugh and make fun of my illness, it makes some people uncomfortable but...this is how I deal! How do you deal???🎗🎗
