Our day begins when I open my eyes, the sensation of being ill already settled into my body.
My hands are tingling, my vision in my left eye is blurred to the point of not recognizing anything out of it, my shoulder feels like I crushed it in my sleep, I wait for these body parts to work correctly so I can get out of bed and start moving.
As I sit up, the weight of gravity is felt in every joint, bone and muscle, I want to lay here and not move but, I know it only makes the pain worse. I know that if I'm still for too long the pain becomes excruciating.
I pull myself up and start my day.
We have 2 dogs and 2 cats, so I love on them and tell them good morning! They talk(yes, my animals are sassy and talk back) and love on me, which makes my morning a happy one.
I wait to see if I can eat because, most of the time my stomach pains are so severe I feel as if I'm starving to the point of vomiting but, if I wait too long I'll start to get dizzy and my stomach will cramp when I ingest anything (it's definitely a strategic dance). Once I start my coffee (I will not survive without this!) I continue to go through my routine; water my plants, feed the yard cat, sweep, start a load of laundry, etc. I have a very limited amount of things I can do in one day or my legs will cramp, tighten, feel heavy and I will not be able to hold my own weight up(I do not want to use a walker, so I listen to my body).
I wake my kids, first is my 13 year old(she's my sloth, the slowest one in the family, unless her phone goes off).
Usually, I ask if she took her pill already (she sets an alarm), this pill is for her blood pressure, it drops so low she needs this medicine to heighten her BP, she tells me yes most of the time. I tell her Good Morning, I love you and how do you feel today.
I go to wake up my 10 year old(he's punctual and does not like to be late, they truly are my night and day) I tell him Good Morning, I love you, and ask how he feels today.
All I can do is pray today is a good day, no pain, no soreness, no migraines, no swelling body parts, no vomiting, no abdominal stabbing, no muscle weakness (and the list goes on)for either of them! Their answers of "How are you feeling today?" will gauge the day for all of us.
Today was a good day!
On these days we have minimal pain and no hospital visits. This does not mean we don't have pain, it just means we have learned to function with pain everyday (which as a Mom is one of the most difficult things to see and help them with). Learning how to figure out what is the"bad"pain and when it is bearable enough to do school work, walk or even function as a "normal" human being. My daughter and I have days when we have to use devices to help us get through the day. For example: knee braces, wraps for joints, slings, and braces for other parts of the body depending on what part and how loose our joints are that day. Subluxation happens often to us, which means we need these devices to make sure no more damage is caused to our already fragile body parts. Today she wore knee braces (which she hates because, she thinks it shows weakness) just another thing for her to have to learn how handle, unfortunately. Even on "good days" we still have to be pragmatic and prevent any further hurt.
Bad days are really bad(understatement)!
Usually it starts with one of us not being able to get out of bed, whether it be because of pain, migraines so severe light hurts when it hits our eyes, abdominal stabbing, not being able to hold ourselves up without help or even something as simple as our skin being touched. On these days I have to continue to ask them what their pain level is and when it gets to a certain number we take a trip to the hospital to see if we can get any help/relief. Which usually is just us being in a hospital room for hours with no answers or help(gotta love chronic illness). When both are having flare ups or are in pain crisis my exhaustion is heightened (I already have to nap during the day in order to keep my energy up), there are literally times on those days I can't hold my eyes open. I run from child to child, room to room, making sure they're both as comfortable as possible. We try all of the things to help ease their discomfort, i.e.; weighted blankets, braces, cold/heating packs, ointments, meds, the list goes on and on. And the day continues to either go down hill(this just means hospital visits with no hope) or get better than the start of our day.
Even with all of our health problems all of the day to day stuff still needs to be done. Cleaning the house, does laundry, preps/cooks dinner, car maintenance, veterinarian visits, the normal day to day items. Now lets add medical appointments(we have 2 to 3 a week, some as far as 2 hours away, one way), insurance questions(sitting on the phone for hours with insurance companies), medical bills(even with 2 insurances they still don't cover everything) , making meals for everyone's specific diets(my son can't have dairy, my daughter has trouble with acidic items, my husband can't have raw fruits or veggies and I can't eat pasta-this part makes me so sad because I love pasta!), make sure everyone has their medications (multiple times and if they're running low order new), once again a neverending list.... These are not all of the things that make up our day but, merely a glimpse into our lives.
When we live lives in constant chaos we turn on survival mode and leave it on. People who live with chronic illness, are caregivers of those with chronic illness or are both have no choice in this matter. The constant barrage of the next thing that has to be done is exhausting (that's putting it lightly) and sometimes it's life or death. People in our situation understand this to the depths of our souls and know that any wrong move can change everything for the worse. We have to constantly advocate for ourselves and loved ones in order to make sure no one dies.
Yes, this is our lives!
I didn't write this article for sympathy, this is only to educate. Our lives can be isolating due to no one fully understanding how our everyday lives have the extra layer of medical necessity. I hope that this will help others to understand when someone says they're having A BAD DAY you never really know what the bad day consist of, please be kind.
Side Note; I must give credit where credit is due.
My support system is so unbelievably strong it is the only reason I get through my days. I have cried, begged, pleaded, and screamed so many times I've lost count but, I have God and my family. My family and my husband's family have been so supportive and have no idea how much we appreciate this. But if it weren't for my husband I know I wouldn't survive, when I'm done carrying the load of the day he carries me. God knew what he was doing when he sent me him. In all of this chaos, heartbreak, pain and sadness we know at the end of the day we have each other.
Until next time, be good to yourself, you deserve it!
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