“I promise you my pain wasn’t poetic. It was days without sleep and pretending I was stable enough to continue.”-Amna Aamir


What's in My Bag?

Just thought this would be fun. :)

Migraine medication

Toothpaste and toothbrush

Tweezers

Panty liners

Tin of Triamcinolone cream

Wallet

Kleenex

Aquaphor

Earplugs

Hair clip

Hair tie

House key (I used to have like 6 keys... House key, apartment key, car key, key to the Konoval's house, key to Simmy's house, key to Celeste's house... Whoa weird... And before that I always had a key to an establishment I was a manager at or to Coffee World when we heldVision  there... Now it's down to one key that I never even use.)

Three lipgloss/balms

4 pens

Comb

Flossers

Basically I have an old lady purse. What used to be filled with random kids toys is now home to healing devices. 

And I make sure to always bring my Bible and a book. Not in my purse, but in a bag. 

Lessons

I've been orbiting a flare ever since November. It was so very busy and so many people were around between then and January, and I did a lot of things in an effort to "make the best of it." 

And it worked for a short while, until my body crashed, and it is still working so hard to "recover" and balance itself again in the quietness of the new year. 

Except it hasn't really been "quiet." Quieter, yes... Quiet, not so much. John passed away, others have received diagnoses of their own, people I love fiercely are battling their own trials. It's been a time of emotional pressing, and what leaks out is not always edifying. I tend to be angrier and more weepy when the exhaustion and pain levels are through the roof. 

I have felt more like the frustrated, trying to keep it together version of myself again lately. I have to ask myself tough questions: what am I trying to prove? Who am I trying to prove it to? 

 Maybe a lesson in all of my pushing through the holidays is the realization that I shouldn't be pushing through anything, unless I HAVE to. For instance, when Aaron had surgery or if someone is in the hospital or something dire like that... Times when people need prayer or there is an emergency. 

Maybe that pressure I've imposed on myself for the holidays and birthdays and anniversaries, is what needs to change next. Because I really forced myself beyond my set limits by going bowling, and various shopping expeditions, and washing ALL the dishes, and trying to keep my daily balance of chores and spiritual disciplines. I started to overcompensate for the years I haven't been able to contribute. And that was intoxicating to a recovering type A, who lived to people please and always signed on to do more. That is such a vicious and ugly mindset. It started off so innocently... This desire to help out a bit more, testing the waters to see how much more I could  handle... Which was fine & dandy, until it wasn't anymore. When my body decided it had had enough of my forcing, and closed itself down in an effort to recoup and rebalance. I don't regret pushing myself. I have to sometimes in order to know what I am able to handle and what needs to stay shelved awhile. I have to remember that it took a lot of time and effort to get to where I was at last year, and I also have to be mindful to carry on in the habits that DO allow for a more functional lifestyle. One where I don't always have to say no, and where some of my heart cries are lived out. And I NEED to hold my perspective, especially on days like today where fatigue is a vacuum and pain thrums everywhere (everywhere!)-the perspective that I DO do more (current flare not withstanding), and I am able to do a lot more than I used to even a year ago. It's vital to chart the progress, or else the whole vision gets obstructed with the harsh reality of daily living with illness. 

All of the carefully constructed rhythms I've mapped out the last few years is still standing, but it is beginning to sink with the weight of ALL the things I am putting on my invisible plate. 

And it has been my choices, my desire to be more like the healthy version of me, that has led me to this hibernation place again. Praise God it is nowhere near how it used to be, however, it can still be very brutal. On exhaustion days (most of them) I can still juice or do basic chores, and I never ever miss a shower (no way. I couldn't handle it. This is my ONE physical activity that doesn't get bumped off the list. The day I stop cleansing daily is the day to really worry!), and that is a vast difference to when I was barely functional on a so-called "good" day. 

More than ever, I have sensed God inviting me into new levels in all areas of my life. Mentally, physically, emotionally, spiritually. The more time I spend with Jesus, the more I am in the Word, the more I choose to replace television with sermons online, the more I choose healthier food options... The more I yearn for them. The more I yearn for more of God. I yearn for His plans and purposes. I yearn for the truest life, bleeding and leaking richly of the extravagant life of Jesus within. 

The choice to DECIDE not to force myself, for any reason, for any purpose, at any time.... Is NOW.  I've certainly come a long, long way but I also still felt like holidays and birthdays demanded I be "well enough" to participate, regardless of what level of pain & fatigue I am in that day. But that's not true at all... 

Example: on Christmas my mom was sick so she stayed in bed. 

Well, I am sick 365 days a year and so maybe this next step also includes me accepting that part of the illness and not forcing myself into a place of stress every month when societal obligations press.

Maybe the attitude I have about the worship night has to evolve and include every night...

If I feel able, I will. 

If I don't feel able, I won't. 

That's a very simple, oft repeated thought, but also one I never meditated on so powerfully as I am today. 

All of this progress, these slow boundaries erected over years and years of uphill struggle, and this is the next invitation for even more progress! How exciting! And it's so cool to watch how Abba interlaces all of the areas... People pleasing and boundaries and illness and being made more available spiritually and emotionally, but less available physically...

I was pushing for me, but mostly I was pushing so I could be "normal" again. One never stops aching for that, even with delicate balances and more good days than bad. To have one's health is the greatest, most precious, and often undervalued gift, and without it, life is hard. There's no sugar coating it. When I let it get in my head, when I compare my accomplishments to healthy people. When I put my life up against the lives of the people around me, I always come up short. My desires to travel and do more missionary work, to be at church every week (Hallelujah for online sermons from my home church in California, as well as a few other churches in other states! I don't always enjoy all aspects of technology, but for this gift- to hear God's word- ANY time I want to, I feel very blessed.), to be around children with such ease, to have a job,  to camp and hike and ride my bike, all of the things I wish for so much... It all feels pointless when I'm flaring so bad, and when I CHOOSE to focus on my can'ts instead of my cans. 

It's been great to CHOOSE to stay in my room if I need to the last month. I feel guilty about it and it is excruciatingly lonely most days, but it's for the best. If I'm around anyone, it's all about survival and my mood is crummy and it ruins things. The sickest version of me is also not very nice. At all. 

It might sound selfish... Or it might just be, that in order to be the best version of myself to others, I DO have to choose wellness and sometimes that means being isolated and excluded so that I can be more present later, and I have to become entirely okay with that. And with that, maybe it means that people are just going to have to deal. Whew. Relief floods just typing that out. I knew that, but I must have set that mind frame down awhile back and forgot to pick it back up. 

People will have to deal with me not being some amazing daughter, sister, aunt, niece, cousin, friend. People will have to deal with the fact that I will text but rarely ever talk on the phone. 

If I can't make a birthday cake or buy cards or do collages, that's just the way it is. 

I am sick. 

It's hard to be locked away when others are laughing in the living room, or when cabin fever gets so severe and I am so agitated with the need for the sense of normalcy, when I am face to face with limitations again and it makes me want to scream. But it could be worse. I have air in my lungs, food to eat, a heater, a bed to sleep in, clean water, books, the Word of God, a support system, and hope. And hope is invaluable. I learned that when I lost it for awhile. Without hope the souls sits empty and unsatisfied.  Fear finds a home in the emptiness of hope. 

So much is shifting and that is just a piece of it. God is amazing in His timing, and surely generous. He is kind and merciful and utterly forgiving. He is patient and affectionate, and the ways in which He will romance a heart is unmerited. 

I am thankful that all of life is a continual lesson in humility and gratitude. That through all of the fleshy feelings and battles, God still meets us where we are and gives us strength to press on to the next moment. 

Jesus, I wait in expectation. Thank you for all the miles you have brought me. I look forward to walking even more with you leading the way. 

I realize that even though it feels crappy, it's still a better version of crappy than it was before, so seeing fibro progress no matter how small, is very important and presses me forward.