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.

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