And There's Progress

Tonight I had an interesting conversation with a family member who has been very resistant to my Lupus condition.  Denial would be an accurate description.  I've not made a huge issue with her, mainly because I've recognized that I can't change a person's mind. I can only make changes in my life, my perception, my reactions.

In the course of this particular conversation, not only did this family member acknowledge my Lupus, but the limitations that came along with it.

Inside my head, I was doing cartwheels and shouting 'HUZZAH!'. To the exterior observer, I was calm and collected not letting on to my inner joy.

This is a huge turning point, in our relationship. We talked openly about how Lupus was affecting me.  How the medication I was currently on was helping me, but not necessarily taking care of everything.  This was the first real, productive conversation we'd had about Lupus since September.

Will there be set backs?  Oh, guaranteed.  That is the nature of relationships.

Does this give me hope? ABSOLUTELY.

Patience is the name of the game when dealing with a circumstance that affects your entire spectrum of life.

Keep Going!

The thing about Lupus is that the person who has is has a choice.  1: circle the wagons and wallow in their own mire of poor pity me, or 2: reach out and find people who are also going through it and fight through it together.

I found a quote this weekend by Winston Churchill this weekend that I thought was apropo to a Lupus flare:

If you're going through hell, KEEP GOING! 

I don't have to be doing this alone.  While our individual journeys are unique, we can draw strength and inspiration from each other.  Making it easier to go through the early stages of diagnosis, a flare or just the day to day living of this disease.

It's easy to sit mired in my own head, never seeking out support or friends that could help me.  There is a whole wide world out there of people facing similar fears.  Fear is so much easier to handle when you deal with it together.

Two Halves Become Whole

I have to admit that I'm not doing so well at the Work/Life balance thing.  Really, honestly it has to do with a deep seated fear that if I slow down, I'll end up stalling.

I know that fear is irrational.  But it is valid.  I feel myself slowing down.  I resent needing to slow down.  I've always been the one juggling a ton of things and getting them done. While it is a cold comfort that I have a reason that my brain fogs out when I do too many things, I just get irritated with this limitation.

Okay, yes I'm pitching a bit of a hissy fit.  If the visual of me kicking my heels on the floor and banging my fists in time with my feet like a three year old helps the visual, enjoy.

So, you've heard from the irrational, scared, angry part of me.  The more accepting, zen part of me is doing her best to pick up the toddler self and calm her down.  Letting her know that in the end it will all be okay.  That the limitations are just something to be worked around, over, under, and through.  It's okay to be upset by the changes.  The cold hard reality check is that there is absolutely nothing I can do to change my circumstances.

Instead of whinging about it, the rational part of me tells me to let things go.  I don't have to do everything I want to do at once.  At work, I can slow down.  I NEED to slow down.  The people with whom I've work with, who know me and trust me, will work with me in my new circumstances.  It's me that has to be okay.

Yes, I give myself permission to be slower and feel like crap while I'm getting the stuff done that must get done.

I'll celebrate the good days and be grateful for everyday that I have.

As my rational self soothes my fearful toddler self.  The two will merge to become a stronger person able to still make the leaps of faith needed to live with gusto and have the serenity to step back as circumstances dictate.

Defined by my Substance

'Death is at your door step and it will steal your innocence, but it will not steal your substance.'

 Mumford & Sons - Timshel

As I work through everything in my head (there is a lot of stuff in my head), I can't help but think about the frailties and limits of this life.  But at the same time, I'm in complete awe of the human will to move forward and survive.

All this sounds really contemplative.  What I'm really saying is that I want to be defined by my choices and the people who I know and who know me along my journey.  Whether I'm feeling good or bad, I really believe it will be how I handle my now that will ultimately define me.  

I don't want my substance to be stolen.  I want to be strengthened as I move forward in my moments of adversity.

Burying my Head in the Sand

Telling people outside my family about my Lupus has been a lot easier than figuring out how to tell the siblings about it.  I know that my friends will support me 100%.  I can trust them to be their for me through thick and thin.

They've never looked at me and said, "I just don't understand why you don't take better care of yourself."  Like Lupus gives you a choice.  You can be doing everything right.  Eating right, exercising, but this is a disease where the immune system futzes out and rebels.  In the computer world, we'd say a gremlin was in the hardware.

I love my family. I've discussed this with my mother.  She's processing this.  My father passed away from an unrelated terminal illness.  This is not something she wants to deal with.  I can't blame her. But part of me does.  She's my mother and I want her to listen.  So, if she's not listening, I'm pretty sure that the sibs won't react well either.

I'll tell them eventually, but the approach will be tough.  There is no easy way to do it.  I'm laying to the ground work.  Putting Lupus support information on the blogs I write that I know they read, on my Facebook page.

I know that in their own way they love me and don't want anything to be wrong with me.  I've seen them drowning in the depths of their denial.  Frankly, I'm not sure that I have the energy to deal with their fear.

Yes, I'm being passive aggressive about this.  I haven't fully processed this myself.

I'm going to go back to being an ostrich.