Autoimmune Disease

You Are Your Biggest Fan

 

For a little while, I took a little break from writing. I love getting my words out, but sometimes the energy that it takes to find the right words in the midst of the fibro fog is just too much to consider. It’s difficult having these illnesses in such a defined world (of which you are on the outside). Sometimes a breath, break, vacation… whatever the best word is, is so needed, I just can’t take one more breath in the moment at that time.

Update:

Ive begun taking lyrica as of today. I’m hoping it helps me with some of this intensely insane nerve pain… neuropathy is scary on your first experience! It’s such a foreign sensation.. from your hands and feet, traveling upwards into your core body, tingling, numbness, burning, stabbing..

I would like to be able to feel my hands and feet please.. 😉 (I make a joke about this because sometimes, that’s all you can really do… neuropathy is the most uncomfortable, painful, stabbing experience that I knew was possible (NOT including costochondritis which is a regular guest at my house)… it’s truly nothing to talk lightly about… but something has to be light somewhere… “Don’t be so hard on yourself.. you’re doing the best you can.”🏆

With autoimmune diseases, or any at that, they’re considered progressive. As soon as you begin treatment to manage your symptoms, you may feel better. But temporarily. Always temporarily. Your body is constantly changing as well. Eventually, your immune system overcomes the medications and treatments that were helping you so well to survive in such a physically and emotionally demanding world. So that’s where I find myself at this moment. But that’s ok. It’s part of it.

My husband has recently asked me to tell him if I’m hurting and where.. which did not last long of course… I could barely take a breath! 😬😣  He has always responded, “Bailey, I’m sorry you’re hurting.” I don’t want pity. I want awareness.. so I came up with a new response for my husband and family (both of who I rarely complain to unless asked)… the response being “I know”.

All at once, the world can overwhelm me.

There’s almost nothing that you could tell me that could ease my mind. 

Which way will you run when it’s always all around you?

And the feeling lost and found you again.. a feeling that we have no control

Around a song some say,

There’s gonna be the new hell, some say,

It’s still too early to tell, some say,

It really ain’t no myth at all.

Keep asking ourselves “Are we really strong enough?”

There’s so many things that we got too proud of…

I want to take the preconceived out from underneath your feet

We could shake it off and instead we’ll plant some seeds

We’ll watch them as they grow

And with each new beat of your heart, the roots grow deeper..

The branches will they reach for, what?

Nobody really knows.

But underneath it all there’s this heart all alone.

What about is gone, it really won’t be so long…

Sometimes it feels like the heart is no place to be singing from at all..

There’s a world we’ve never seen; There’s still hope between the dreams.

The weight of it all could blow away with a breeze.

If you’re waiting for the wind, don’t forget to breathe,

Cause as the darkness gets deeper, we’ll be sinking as we reach for love…

At least something we can hold..

But I’ll reach to you from where time just can’t go.

What about is gone

And it really won’t be so long..

Sometimes it feels like the heart is no place to be singing from at all..

– “All At Once” Jack Johnson

 

Maybe this is part of my closure.. my closure of the years of searching for the source of my pain… for the three years of multiple doctors who told me I was crazy… and for the same three years that my husband and I refused to give up searching..

Sunflower – Always find the sunlight and the shadows will fall behind you.

Peony – Healing. Used in ancient times as a Chinese medicine for pain relief and to ward off “evil spirits” in England.

Lotus – Always growing through the muddiest of waters. Rising up above the challenge it’s constantly given. A symbol of rebirth.

I’ve been drawn to flowers my entire life. The simplicity and yet at the same time, complete complexity of them… they’re all different. Such a perfect form of God’s art in the rawest fashion.

I searched for weeks and was drawn to these three. Not only for their beauty, but for the deeper meaning behind them that tells my story without words.. I want to put them somewhere as a constant reminder.. in the most permanent way.

✌🏼&💜

Bailey

2 thoughts on “You Are Your Biggest Fan

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