I'm No Longer Keeping My Feelings About Lupus Bottled Up

Hold, hold on, hold onto me
‘Cause I’m a little unsteady
A little unsteady

– “Unsteady” by X Ambassadors

young woman sleeping in the sun

How much physical pain can one person handle? How much is too much?When does the brain decide to open up the flood gates and let out all that pain bottled up inside? How do you stop once you start? Why won’t this stop! I am so tired, I am so tired! Please, pain, stop!

My undoing was a glass of wine… Or was it last night’s sleepless night due to unrelenting rib cage pain, which caused every breath to be excruciating? Or was it that the only relief I could gain from unbearable bone pain was morphine? Or was it that I have been swallowed by this nasty flare for over three months? Or was it simply that I had finally reached my limit?

I think deep down I knew these feelings were coming. How long can I survive physical pain before the emotional pain catches up to me?

I am a bottler; I know this. From an early age I have had the mentality that this is my reality; let’s just deal with it. Let’s look on the the bright side, be optimistic and everything will be OK. A lot of the time this does serve me well. I wouldn’t survive without this positive outlook. My problem is I bottle for too long sometimes. I keep it all held tightly inside and then become scared to let it out because maybe my fear won’t stop. I bottle to protect myself and I bottle to protect those around me.

Tonight the lid released…and the contents poured down my cheeks and pooled at my swollen feet.

I sit here tired. I sit here absolutely shattered. My soul is exhausted, my body is drained and my mind is numb. The only thought I can form over and over is, “I am tired, I am tired, I am so very tired.” It’s the kind of bone-crushing fatigue that no amount of sleep will fix. The type of fatigue that even when I am lying down I feel like my body is going to collapse from under me. The type of fatigue where talking becomes a mammoth task and sometimes even breathing feels too exhausting. I wish I was just “tired” but in reality it is so much more than that five-letter word.

Tonight I sat in my quiet house and I finally let myself cry…I let myself sob. Cry out the physical pain, cry out the frustration, cry out the limitations and restrictions, cry out the life that I feel I am missing out on. Just cry because I simply feel sad. I love my life, don’t get me wrong  – I have so many blessings. But right now it is just so damn hard. Pain is so cruel and overpowering.

Tonight I give myself permission to feel these emotions, to admit I am struggling and to allow myself to cry because the reality is that it is really miserable to be in a body full of pain. I need to allow myself to feel these emotions instead of blocking them out. It doesn’t mean I am not coping and it doesn’t mean they will never stop.

It is OK to cry, Liv. You are not failing anyone. Let that guard down!

Tomorrow I will pick myself up and I will keep fighting because even though my pain is unrelenting, right now I know deep down in my soul I am that little bit tougher; that little bit more stubborn. There will always be a part of me that is stronger than this pain, even if at times it is only a tiny particle. I can allow myself to fall apart but I must pick myself back up.

For now, Liv, just rest – close your eyes and rest. You have been so brave and just like all those times before you will be OK!

This post originally appeared on Livvy Joy.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Lupus

woman sitting in an office chair holding coffee and looking out the window

6 Ways I'm Taking Ownership of My Lupus

What helps me to approach my disease more positively is accepting it as just another part of me – as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that. 1. Learning about lupus. While [...]
Profile photo of blonde woman with eyes closed.

When People Ask Me, 'Are You Better?'

“Are you better?” It seems like such a simple question, and for most people it is. Asking if someone is doing better is common to see if they are improving from what was affecting them. For me, it is not that easy. For anyone with a chronic illness it is not an easy question to [...]
Digital painting of a girl with light around her, with her heart also lit up.

How I Find My Life With Lupus to Be Ironic

There was a period of time, not long after my diagnosis, when I felt as if I had truly lost everything. I felt overcome by my condition, as if it had sucked all the goodness out of every aspect of my life. Today, I find myself on the complete flip-side of that stage in my [...]
woman standing outside with her arms outstretched and the sun setting behind her

How I've Grown as a Person Since My Lupus Diagnosis

Being chronically ill is a sort of perpetual upheaval in which unexpected physical changes are accompanied by a load of anger, confusion and fear. Yet, through all of that mess, my illness is also causing my perspective to shift on several levels and is helping me to grow in ways I would not have suspected. Above [...]