Setback (#keepingitreal)

Start of Lake Loop Trail

Oh. This is so not the post I want to be writing tonight.

But it's time to #keepitreal.

Part of keeping it real means that this post may have typos, be a little rambling and not the most well-written because I am so tired. Bear with me! :)

I've been waiting not-so-patiently for the energy to write blogs about the big shifts, the transformation, the grieving process, the gratitude I feel for the steadfastness of my friends and family, the success of Rowe's Research Runners, and just in general get back to blogging.

I Love the Curly Q's on This Plant!

Instead, I'm here to say that I'm in a crash that hasn't been resolving. 

 I'm taking a little of my energy to write a quick post because I am feeling sad about missing out on everything, guilty about being out of touch and behind on my thank yous (especially for the walk and my birthday), lonely from not being honest/authentic about what is going on, and just plain old bummed that I feel so poopy.

The emotional heartache of setbacks is equally as challenging to me as the physical aspect.

Beautiful Day

I knew I would crash after the work we did for two major events this year:

1. The Healthcare and You forum 

and 

2. Rowe's Research Runners local walk and Baltimore event,

but I had no idea it wouldn't resolve after a couple or weeks or even a month. Or at least improve. 

I was SO looking forward to a Fall of being outside, getting back to walking more, catching up on snail mail and emails and thank yous, blogging again, seeing friends, going out for more fun stuff, celebrating the holidays, going to Friday night services, working with Marc Friedenberg for Congress, Sen. Bob Casey and Ezra Nanes for State Senate, and doing some serious sorting through piles around the house.

Moss + Roots

My body had some seriously different plans.

My fatigue has increased without improving over time, even with DRAMATIC cutbacks in my activity level, more time to rest, and engaging in more quiet activities rather than ones that can be overstimulating. 

The fatigue is always one of the most difficult symptoms because My. Body. Just. Can't. Won't. 

No. Matter. What.

This isn't about will power.

In addition, I'm struggling with the usual--heart rate and blood pressure fluctuations, difficulty focusing/brain fog, difficulty falling/staying asleep but needing a ton of sleep, pain, and some new challenges that require a lot of time, energy and management.

I write this because I realize I often don't really describe what it can mean to 'crash'. It's a term so easily thrown around amongst others with these illnesses, that it becomes part of my every day language. 

On Thanksgiving Day, I texted with three other friends with chronic fatigue and/or dysautonomia. All of us were trying to get our bodies to move from one location to another. Ha! Sometimes, I'm so 'in' that world and language I forget to articulate it to the 'healthy world.'

End of Lake Loop Trail

I've been so quiet because I was waiting to just skip over this little setback and get back into the groove of things. I figured soon enough I'd just resume some of my activities and get caught up with folks. 

Instead, I'm saying "No" to virtually every invitation that comes my way. 

This often leaves me in tears. 

When I do make careful choices to go out, there are often major consequences.

I've zeroed my energy in on four things: 

1. Resting: being with the puppies, watching TV, knitting, listening to a book or music. This also has meant mostly staying off of FB, email and the computer in general.

2. Doing what I can to focus on my body and mind: PT, massage, acupuncture, meditating, counseling, long baths, little walks.

3. Trying to do at least some of the mundane tasks of life so that I don't fall further and further behind! 

4. Making tough choices about when and where to go out. I'm trying to maintain some of a social life without causing more of a setback. 

Winter Is Almost Here

After having easier days, more activity and a little greater semblance of 'normal', it's a pretty tough to 'go back'. It always is. All of us with chronic illness hate, hate, hate setbacks because of their uncertainty, their lack of an end date, their unpredictability, their ability to make us feel like the rug has been pulled out from under us.

And most of the time, we really don't know why we are having a setback. I know all of us looking at my crash are all pretty confused about why I am not seeing any improvement. 

Thankfully, we just happen to be headed to see Dr. Rowe next week (I sure timed that well!). And thankfully, my team locally is always trying to figure out the puzzle that is this crazy body of mine.

Thanks in advance for listening to my #rant. I realized I was isolating myself more by not sharing what's been going on and just dropping off of the face of the Earth!

I hope that I'll be on the flip side of this sooner rather than later. 

In the meantime, I hope for the continued grace and compassion you all show me over and over and over. I miss you and hate being out of touch!

Blessings,

Emily

Note: Photos are from Black Moshannon Park, one of my very favorites. Over the weekend, we went for a drive (one of my favorite quiet things to do when I'm not feeling well) and a little walk along the lake. Having that break on a sunny day was wonderful!