Autoimmune Disease

Fibromyalgia, You’ve Got Some Nerve..

When the only thing strong enough, fast enough, sly enough, disguised enough, unfaithful enough, disloyal enough, and just plain daring enough to kick your ass is your own self, how are you supposed to arm yourself for battle?

In my last post, I was in the middle of attempting to get off of my Tramadol and Lyrica to replace them with Naltrexone. Let me tell you…. if it works for you, wonderful! I’m honestly so glad for you. However, for me? No. Just no.

I’m exhausted. My aunt just texted me and told me how much of an inspiration I am to her… how strong I am….. I thanked her so kindly, and replied “I’m so glad i come across that way on the outside” (and I continued the end of my sentence to myself): because inside, I am just beat into the ground. 

It’s difficult for me to see a text come up from someone who I do not communicate regularly with, asking if I’m ok – and yet, nothing from my inner circle of unconditional and “family is family no matter what” contacts. 

I have so many feelings besides these types of pain that most people will never know actually exist.

Can I be honest about what really hurts me? Besides the pain, I mean. My body can beat itself down day in and day out, but what hurts me, is when the people I count on, let me down.

My family, my biggest cheerleaders and supporters for 25 years have smushed into my brain that they will ALWAYS UNCONDITIONALLY be there for me…..

They’re not. Maybe it’s because they don’t know how to be. Maybe it’s because they’re fed up with my sicknesses. I wish they’d think of how I feel if that is the case..

When you’re sick, it’s hard. I can’t even imagine being a family memeber of someone who is sick…

I understand it’s a “given” that I feel pain and yuck every day. There are good days though! Come some, come few. I’ll take them every time. Ask me how I am, PLEASE, so that I can share anything with you!

I strongly need someone to WANT to know how I’m doing. My husband does. And he is the ONLY ONE in my life who asks me, every. Single. Day. Regardless of circumstances. He does not assume because he knows that these illnesses are unpredictable. Unpredictable is a huge understatement.

We all know what assuming does. And yet every person in my life, except my husband, assumes that my days are all bad. “Don’t ask. It’s negative”. 

In my mind, the thoughts that run through consistently when I get the warning signs *FLARE FLARE FLARE*:

I’m such a burden. My husband is only a caretaker of me. I’m supposed to be a housewife: I’m not a good housewife – I’m not even a good wife! He works so hard and has to help me too; I feel so guilty. I want to go out with my husband. I want to experience life and take my dogs on a walk and just breathe in fresh air and take in the sunshine.. but when my husband is off, all I feel is: bed. Sleep. Rest. I can’t life. I suck so badly at it. In my life, I have things in which I have to complete… I can’t complete these things so I never even get to the extra social aspect of life! My quality of life is beyond low. I feel as if no one cares. No one wants to hear of my issues and pains and aches. I need so badly to speak of them though… I’m so afraid my husband will leave me… if I can’t be the wife he needs – I barely measure up to a housekeeper for him… I can’t lose him…. my life is crumbling.
Every. Single. Time. 

“Why can’t you make up your mind?

Watch your mouth; hold your tongue – some things are better left unsaid…

Everything you, every time you, every word you say.. if I told you this was killing me, would you stop?”

-The Juliana Theory

How would you feel if you thought those exact thoughts every time you felt your sickness flaring up?

I just want someone to care. And they don’t have to understand! Because I promise, you cannot begin to understand, I just need for someone to WANT to understand.

Thank you, Brady, for lifting me off of the ground and carrying me when I’m too weak to lift a finger. And thank you, Brady, for WANTING and constantly TRYING to understand. 

These illness is always changing. Forever unpredictable.

Definition of social life with Fibromyalgia and Sjögren’s:

“So keep your ‘It’ll get better’s and I’ll keep my ‘I’ll be just fine’s, (I’ll be just fine). I’ll show you flashes of color and hide behind bouquets of lies. I don’t know if I’ve been worse; I don’t know if I can change; but right now, I don’t think that I’m ok.”

-As It Is

I’ve learned the tricks to only show you what I want you to see. That’s a separate post entirely. 

Hang in there spoonies.

Even when your spoons are gone… somehow we still go on – followed by complete collapse. (It’s ok. You can relax now – it’s just me.)

✌🏼&💜,

Bailey

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