I am tired
Managing a chronic illness is a full time job and many of those with one illness either have more than one or have one come from their original illness. Many chronic illnesses can come with secondary health problems or tertiary. On the bad days, many of us begin to wonder when it will end. When will we stop being diagnosed with something new? When will we get good news on the phone instead of always bad news? When will they finally figure out what is happening to us? When will someone finally advocate for us as well?
Infusion appts that last hours and hours.
You may have heard friends who have chronic illnesses and you may recognize these statements and comments from them. When someone with chronic health issues looks at you with tears in their eyes and a catch in their throat while saying, “Im just tired”. They aren’t talking about sleep. They are talking about all the work it takes to maintain their body. They are tired from calling and arguing with doctors, they are tired of things not working when they should, they are tired of paying to live when they don’t have anything to pay with, they are tired of hurting all the time with no end in sight. We are tired.
How I live most of my days
Can you imagine how disappointing it is to spend so much time organizing medications, setting up appointments, researching treatments, changing your diet, adjusting your schedules and deciding to stop certain activities all for your body to simply stay alive but your health continue to decline. It is maddening. You flip your life upside down and feel just as upside down as you did before. I mean, sure if you did nothing you would feel worse. However, it would be great if the more we worked to set ourselves up for success the more our bodies functioned.
This is my Hero Health machine. This has been a life changer. Mike bit the bullet and bought this for me to help with organizing my medications and knowing when to call in refills. This machine is incredible and it removes one more thing that we have to do.. sort pillows every week. It has amazing features and if you click on this picture you will get 3 months of access for free!
Recently, I have been getting into better routines, learning more and more about myself, adjusting my diet, creating ways to make maintaining my prescriptions easier and yet, I get a surprise call with a new diagnosis. There is finally a name for the symptoms that I have. Finally, there is an identifiable treatment but there is still the grief that comes with a new health diagnosis.
This was when I was doing my at home sleep study to find out that yes, I have mild obstructive sleep apnea. So I get to sleep with a cpap now!
I am tired. I am a newly 26 year old and I cant help but wonder how this body, this shell, which is quite clearly running on fumes, is going to make it another 10 years. Wondering how someone so broken can live an entire lifetime. Being diagnosed with 10+ chronic health problems really makes you think things over. At times, I find myself wondering how I can ever be a mom if I can barely keep my body upright. How will I manage the fact that my body truly doesn’t know how to function without every move being overseen and micromanaged? It breaks my heart and yes, tomorrow I will go back to fighting it. For right now, I am sad, I am mad, I am disappointed.
Do not be fooled into thinking that everything is managed and i just move easily from one thing to the other. I want to live more than lay on the couch so I fight through it all with a smile on my face.
I know this feeling wont last forever. However, somedays it feels like it might never end. And that is the honest truth. I am sharing this because the whole reason I started my instagram page, my blog, any of my social media was all about radical clarity. I don’t want to put on a show. I want to be the page you turn to when you are wanting the truth and not the watered down highlight reel being shown to you.
I refuse to just be another account that only shows the fun, easy, and happy sides of their lives. I am showing you it all. Radical honesty, no highlight reel.
Usually during these moments I allow myself 48 hours to mope around, I try to get as much of the cleaning around the house done. I try to do anything and everything that makes me feel like I have value as well as anything that makes me feel a little better. In Baton Rouge, I had a little garden that I would plant and work in. I loved looking at the little wildflowers and things that I had grown. Here in Texas, I love the natural wildflowers that grow everywhere here and driving around at sunset seeing the flowers and it sure is beautiful.
Wildflowers make my wild heart happy.
