4th Of July

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I woke up this morning about 3 hours later than I would have liked. My alarms going off since 6am, but still not phasing my exhausted, sleeping body. The only thing that woke me was the constant nagging of my two small children outside my bedroom door. They wanted fruit snacks, string cheese, and other snacks. Half awake I was able to convince them to turn on cartoons and eat some fruit out of the basket on the kitchen table. I fell back asleep with a sense of guilt and shame, knowing a normal mother would be up with her children providing them with the care that they need. Instead I am shoving them off while I drift back into an uneasy, and less than satisfying sleep. 

When I finally woke up, I was grumpy, swollen and in pain. It was hot as hell in my room, and I couldn’t figure out if it was my body not being able to regulate it’s temperature (again) or if it really was almost 90 degrees, like it felt. Half hunched over, I made my way through the sea of clean and dirty laundry on my floor; laundry I am too tired and sore to bother putting away, because it will just be painful to pull it out when I need it. Once in the bathroom, I dreaded using the toilet for the first time. This may be gross, but people with chronic pain and illness will understand that it is painful. Most people just use the bathroom and carry on, not even thinking about their bladder, and other bodily functions. Not me. I spend at least 15 minutes on the toilet, in pain, and trying to get my body to function. It hurts inside to pee, and it feels like my bladder on fire. I have been checked multiple times, even had discovery surgery to find the cause of this pain. They have nothing. I just get to deal with it. Good for me. 

Making my way down the stairs is painful this morning because my knees are swollen. It feel smoldering in my house, and I can feel my feet bulge as I take each step; my knees popping and creaking in pain each time I bend them. I grab the banister for balance, and my hands burn in pain. I can’t grip, but at least I can lean. My shoulder whines about the damaged ligaments and torn rotater cuff that I never mustered up the courage to have surgery for.

Making it down the stairs, I see my kids playing nicely on the floor. There are chunks of orange peel and apple everywhere. I nicely request that they clean it up, and I will make them some breakfast soon. Breakfast isn’t really an applicable word though, as it is nearly 10:45. Brunch? Whatever. I will feed them a real meal. I make my way to the couch, and sit down to check my messages. I am a social media junkie, which has only gotten worse since I have been sick. I feel the need to communicate with the outside world as much as I can. It is hot as hell in here. I realize I am covered in a layer of sweat from head to toe, and it is making my skin itch. 

Forcing myself back off the couch, feeling pathetic as it hasn’t been this difficult since I was last pregnant 3 1/2 years ago, I head to the thermostat. Eighty Five. What the hell? Someone has turned the cooler off last night, and switched it to heat. Right now it is generally 90 degrees by the early morning outside, and the heat has begun to soak into the house due to the lack of cool air. Sadia. Ugh… my 13 year old daughter who thinks that changing the settings on the thermostat is better than grabbing a damned blanket for warmth. Nice. I will have a talk with her when she gets up. I turn the cooler back on and head to the couch.

Not 15 seconds after sitting down, my 3 year old starts to whine about food. Right now the worst thing for my aching head is whiny little voices. It kills my ears, and causes me to cringe, which sends pain through my entire body. I can’t help but snap at her to knock it off, or go upstairs. This just results in a louder cry, and I order her out of the room. She had every right to ask for food, as I am very late feeding them. They are used to being fed by 8am at the latest, and are likely very hungry, despite the snacks of fruit this morning. 

I could go on and on about my morning. The pain I endure, the frustration. The guilt I feel for not being the same, energetic person that I once was. Staying up half the night, then getting up and going to my job at 5am. Working manual labor for 8-12 hours, picking up my kids and still having the energy to do all the things a mother should do. Park, play, cook a full healthy dinner. Read them stories, and talk about the magic of dreamland. Hugs and kisses goodnight, then up half the night hanging out with friends, or reading; me time. Now I can barely get out of bed in the morning. Deciding if I want my hair or my face to look good today, because I can’t do both. Trying to decide if it is worth trying to wear pants today, as they pull on my swollen knee joints, and push on my hips. Sometimes by the end of the day I feel bruised and damaged from my jeans. Yoga pants… I am one of THOSE people now. Half dead looking, wearing yoga pants and a stained t-shirt in public because I am too sore and tired for anything else. I have switched to a sports bra half the time because regular bras hurt my sternum. I had no idea that clothing could hurt. 

I feel really alone my world, as people are so sick of seeing or hearing about my pain. I feel like they think I am being over dramatic, though they do not know that it is much worse than I can even express. “You don’t look sick” or “You look fine” “I thought getting sick made you skinny”. I have gained 40 lbs since January. I hate this. I can’t explain it, so I just shrug and tell them I am lazy. I am not lazy… I am sick. My medication increases appetite and stores fat. What do you want me to do? I can’t work out, and dieting is hard when you have no energy and 3 kids to feed regular foods. I love soup. I am gluten free due to celiac, as well.. but I love breads and such. The gluten free versions are much fattier. I am just going to turn into a fat lump of a person. Most days I don’t care because I feel nobody will love me anyway. Who is going to love a woman who is so damaged? Both emotionally (Due to a very abusive up-bringing, and adulthood. It has been 6 years since I was last abused by a partner.) and physically. Mentally damaged, and chronically ill. Who would want that? Obese… At least I have a pretty face…. Today I am hopeless and sad. Maybe tomorrow will be better.

Happy Independence Day.

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2 thoughts on “4th Of July

  1. Miss Soul

    Medications are so cruel. The weight gain is something that we all could do without, maybe one day something that works and is useful with actually gets developed and if the disease has not killed us, maybe we will get our bodies back minus the pain and side effects.
    Maybe tomorrow is going to be a better day for you, or the next day, sometimes my hope for a better tomorrow is very slim, but what choice do we have then to hope. God bless you, keep writing, it lifts the heaviness of the heart for a few minutes. Everyone is tried of hearing the truth about how we feel, yet no one is helping, it’s always lip service. We deserve better than that.

    • I agree very much. I am not looking for sympathy, just understanding. I don’t want people to feel sorry for me, but understand that I am genuinely in pain. Understand what I’m going through. You wouldn’t be angry at someone in a wheelchair for not walking; their disability is visible. It’s hard having an incurable, invisible illness.

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