It rarely goes as planned

 

Bad illness weeks create a kind of depression that is still hard to climb out of, even after 5 years of battling all of this.

It’s been a balancing act this year- the sicker I get, the more I try to hold on to this life I have worked so hard to cultivate for myself.  The fun and friendships, the nights of living in the moment, the laughter, the normalcy. Some days it works, others, the aftermath is just a reminder of what life really looks like for someone who is chronically ill.

My business has grown, but at the cost of my health.  For every client I say yes to each month, its one new symptom that shows up and sticks around for a few weeks- just long enough to rest up and do it all again the next month.  Why?  Because I can’t handle a normal job and because I must be able to support myself.  I need to be able to do this for me.

Each month, I fight with myself while I try to continue creating something that makes me happy while also not killing myself in the process.

So far, I’m still alive but apart from that the rest is up to interpretation.

It was a hard week. Took on some business and by the end of this week I was dragging.  Had to leave karaoke early because my body just wasn’t ok and instead of a night doing what I love, it was another night in bed alone, and lonely.

Friday wasn’t much better.  My body hurt.  A kind of deep ache that you know isn’t going to just go away with rest.  So, the day was spent in bed, working when I was able, and stressing when I couldn’t because I have clients with expectations and my brain was equally as sluggish as the rest of my body and I just couldn’t focus enough to do the kind job that my clients expect, or better yet-that I expect out of myself.  It was basically a day where I cried a lot over every single little unimportant minor inconvenience that happened because I was so past my breaking point.  

You see- bad pain days are so much more when you are chronically ill.  It’s a constant reminder of things looking different for you.  It makes you self-conscious, it makes you sad, it’s a constant mourning and grief.  Sometimes, it creates walls.  You feel worthless and invaluable to those around you.  It’s a reminder that you can’t move to a normal rhythm and routine and while that might work OK for you, it doesn’t often go over well with others who are used to a different life.

It's isolating.

Finally, to top off the week, that evening I tripped on a power cord and went straight down on my broken hip, hard.  So hard that it ended in 30 straight minutes of screaming while the paramedics tried to figure out the best course of action to get me into the ambulance.  I couldn’t move and the way I fell made it difficult for them to shift me without potentially causing damage.  They ended up pushing some meds, burrito’d me into MY blanket, and pulled me down the hall and finally got me onto the gurney. 

The drive to Baptist East was rough.  It took 3 pushes of fentanyl, a round of ketamine, and finally a push of morphine at the hospital.  Multiple tests and about 6 hours later, the doctors came in and told me that I had no NEW breaks, but that they found severe arthritis in both hips. 

And just like that, Lupus made its entrance into an already frustrating situation.

I was diagnosed with late stages osteoarthritis a few months ago along with the possibility of fibromyalgia and have been going through testing to see whether it was psoriatic or rheumatoid based.  My hands and feet are shot so getting the news about my hips really shouldn’t have been surprising, but I had attributed a lot of my pain to the injury, it never dawned on me that it could have been more.

So with arthritis not being treatable at the ER, they released me.  Mom got me home and I laid awake in bed the rest of the morning, hurting too much to sleep, too many questions in my mind to even allow me to relax a little.

It’s such a lonely journey. You get news and all you want to do is crawl into your shell while also simultaneously craving comfort. I’m so sick of tests and bad news.  I’m so sick of being sick and tired.  All I want is to live.  Really live.  I’m coming up on my 5-year anniversary of all this and not much has changed. To put it simply: it’s exhausting.

Today is a little better.  I am less sore though I still feel an ache and a sadness that doesn’t just go away overnight.  I was left to unexpectedly mourn yet another diagnosis and that takes time to heal from.

I often get people that ask me why I share this journey so openly- why can’t I just look at the bright side of things, be an inspiration? Well… why can’t I be both?  I think there is a time for grief and sadness, and it is OK to mourn when things don’t go as planned.  It is equally as important to be aware of the blessings in your life, but that gratitude shouldn’t negate the right to feel the other parts of being human- the hard parts.   

I share because this is me, all of me.  This journey has been hard, and I have done it largely on my own, surrounded by a healthcare industry that hasn’t been able to help me. If my story allows someone else to feel supported during their own crisis, then I think my willingness to be open was worth it.

It was a bad week.  I can’t promise next week will be better, but eventually it will be and that is what matters.