Autoimmune Disease

Trustful Moments

That’s exactly what they are… moments.

“She is at a place in her life where peace is her priority and negativity cannot exist.”

As a human (contrary to what you may feel, I’m not an object) with multiple chronic illnesses, I’m difficult. I’m a difficult person, spouse, friend, daughter, sister… It’s just a fact. Please don’t feel as though I’m unaware of this truth.

I’m not sure those outside of my body consider how difficult this life is for me.. just in general. It’s always assumed that my actions or responses are purposeful..

 

I’ve come such a long way from my diagnoses until now. I’ve reconnected with two old friends, which was something I truly needed.. Make me laugh.. Get me some fresh air and sunshine.. Let me see the world.. And in those times, I trust you.

When you call me, I trust you.

But it all turns into temporary moments.

Chronic illness changes you as a person. Pain changes you as a person. You have to learn to be there for yourself. YOU are the ONLY person who is GUARANTEED to be with you always and through anything — no matter how ‘done’ you may be with the cards you were dealt.

“We cannot choose the card in which we have been dealt..

All we can do, is play the hell out of the ones that we got.”

These trustful moments make my physical pain so much more tolerable.. and yet so much worse when the moments come to an end. Eventually they will add heartbreak into my days when I become “inflexible” to be around… Until they have gotten over the inconvenience, or are bored, and decide that I may be worth while in their lives for the trustful moment, ultimately cycling back around to “never mind.. this is too ridiculous”.

I don’t think you understand. I’m not flexible. I’m a prisoner to my illnesses. I will not let these diseases define me. However, that doesn’t mean that I can act like anyone else may be able to. I have to take care of myself, and that’s my number one priority.

Let me explain:

Going out? Drinking? Dancing? Conversing? Shopping? Hanging around your house?

I can’t.

This is usually where the trustful moments end.. When you can’t, or won’t, try to understand.. try to see.. come outside of your comfort zone..

See that I’m not lazy. I shouldn’t be judged for lying in bed at 8:00 pm.

That’s visible.

Let me explain beyond the obvious:

My doctor’s appointments range from every 3-6 months.. and that includes at least 2 doctors, sometimes more depending on what issues are involved at the moment of time..

Each time I see any doctor, a medication is changed in some way – frequency of taking, time of taking, adding more, subtracting current and adding new, adding new to current.. something is changed each time.

Save yourself some heartache and betrayal, fellow spoonies. Rely on yourself. Make yourself whole in any way you need. What are you missing in yourself that these individuals fulfill in you? Be your own biggest fan. Be your own largest support. Be your own comfort. Be your own safety. Be your own happiness.

I’ve found with my trustful moments, as soon as I cannot do what they wish, or can’t help to have the day work out exactly as they hoped, if I need a day to myself -quiet, no noise stimulation, if I’m having a painful or incredibly fatigued day, even if I need a listening ear.. each situation results in a ‘break’ of true friendship.

Cue confusion. Cue heartbreak. Cue “what did I do for this?”. Cue “what’s wrong with me”. Cue “I hate these damn illnesses!”. Cue “Why can’t I be normal?”

Dear Spoonie,

You are normal. Every person is normal to themselves. And you, dear spoonie, are no different than any other. Each normal has many differences when compared to another person’s normal. Stand up tall, Lift your eyes from the ground, your crown is falling. Wear your crown strongly and proudly, because maybe, just maybe, the most interesting thing about you is what your so afraid of sharing. Break away from what is considered “the norm”. There is no ‘norm’ when it comes to describing multiple people. Be proud of your illness. Be strong in your illness. Be brave in your illness. God gave you this normal because you are strong enough to live it.

No, Im not saying that things will be easy. They will be *bleeping* hard. Living this normal is the hardest thing I’ve ever done. You will feel alone. You will feel misunderstood. You will feel purposely left out. Work on being your own trustful moment. Only then can you change “trustful moment” into “trustful life”. Never release your trust to the hands of someone who does not only not understand you, but does not deserve to have such power over you.

Hang in there fellow spoonies. We each are our own normal. Don’t ever seclude yourself away from the ‘norm’ ever again.

“If you’re lucky enough to be different, don’t every change.”

-Taylor Swift

 

“And you,

you scare people

because you are whole

all by yourself.”

-Lauren Alex Hooper

Peace & Love,

Bailey

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