Freedom to be OK with me!

As a kid I always loved the freedom to ride my bike, be outdoors and spend time on a great adventure.  The older I became, the passion grew more inside me.  I chose a path in my late teen years that required me to work a lot and some of this was put on hold.  I savor a few times where I went on adventures with friends.  It was exciting...  exhilarating!   I felt one with nature and absorbed as much as I could.  Hiking, biking, driving, boating, beaching, walking...  I was at peace!

I have a few moments since being married where I continued my passion.  Definitely not as many as I'd like and unfortunately not as many as I had wished to share with my family. 

Now that I have a chronic illness, and possible other health issues that have not allowed for me to fully recover, I have done a lot of spoon saving.  (Google "The Spoon Theory" if I lost you here.)  If I were to go out and let's say hike...  it would take a few days to recover enough to function properly.  Extreme fatigue, body aches and almost a complete body shut down occurs.  I've found ways to help the aftermath and I take less time now to recover, which is a blessing!  But, I still need it.  One day for fun, the next day or two to rebuild.

Lately I feel everything has been worse.  I've been through a period of 3 weeks of sickness.  Started as a sore throat, progressed to a sinus and ear infection. Then came the horrible, chest burning, hacking cough.  Then came the high temps, chills, and migraines. Now, most of my symptoms are gone, but I still have ear aches, chest tightness, and extreme fatigue, (which I expect from 3 weeks of being ill.)  I'm worried about my adrenal glands and how exhausted they are from being sick.  I'm worried about how my cuts on my hand and arm have healed slowly, including getting infected too easily.  (It's a small sign my infection marker is high.)  We still don't know why my WBC is low and why I cannot stay healthy after treatments.  

Sometimes I just feel numb from it all.  I just sit and stare at things and shake my head.  No reason to be angry.  No reason to fear anything.  No reason to complain.   No reason to let it stop me from at least trying to be functional.  When I drive, read, type, cook, stir, lift, fold, dry, wash, hold....  I constantly have to give my arms and legs a good rest and a shake.  I rotate limbs and extremities.  I roll my neck and back around constantly.  I dream of living in my tub just floating away in a very hot bath.  I dream of the house we almost bought that had a spa and a small pool...  I was going to buy one of those neck-flotation-pillows and let my body go.  Water therapy is amazing for my body! 

Everything is in short bursts or in sheer endurance as if I were in a gym pushing my workout to the limits.  I often fold laundry as if it were a competition at the gym...  I probably sound funny counting the pieces of clothing as I near the end of my reps.  I have to make it ridiculously silly or I end up crying at how crappy it is.

I always see the quotes from the support pages I follow about living with an invisible illness and how hard it is for others to understand.   I have never related to it much because I have the most amazing friends and family who believe me and love me no matter what.  But somewhere deep inside I've noticed that just maybe I feel a bit frustrated because I have made myself feel as if I'm supposed to do it all.  First of all...  I'm a stay-home-mom of 4.  What the heck am I thinking!   Haha!  Second, I have a disease that limits me.  What am I doing to myself?  Why would I even give into that crap...  I'm supposed to be super woman, which doesn't exist,  and take on the world??

As I've brought my crazy idea of who I should be back down to reality, I realize I'm pretty awesome.  I don't need to list why...  just know I figured it out.  And I did so while enjoying the outdoors.  I did so while driving my car with the windows open, while laying on my patio chair watching my kids play, (or fight....)  So I thought, why not get out more?!!  I've read my scriptures more and allowed time to contemplate them.  Being sick I was made to let go of even more and to sit back and think about how everything is.

I need to step away more for contemplation. I need to get out for more focus and grounding.  And while I'm at it I can throw in a little adventure to ignite my soul again!  Maybe, if I'm feeling really adventurous, bring the kids...!!  (I love going places with them...  but let's face it...  they are getting older and they fight a lot.  They seem to be grounded or in time out a lot lately.) 

As I write my random thoughts down, I have to remind myself that I'm in good hands.  I have faith in the Lord that I will be healed.  As scared as I may feel at times, it's just a small hiccup in my faith.  I know everything will be ok.   I know I'm in good hands.

The mask I wear

It's challenging enough being a stay at home mom, a wife, church member, friend, daughter, cousin......  but to have a chronic illness that stops you at a moments notice from functioning....  you end up embarrassed all the time or leaving with a lower self esteem.

This last year I have done my very best to keep my mask of faking "being well" on when living my life day to day.  I cannot explain enough how much daily pain I am in.  I have found ways to help distract me from the torture.  Music, hugging my children, warm baths, taking a drive, watching a movie, doing chores, organizing a drawer, calling a friend, studying my scriptures....  I've learned to  keep moving.  If I sit I will notice the pain more and end up focusing on it which in turn makes it seem maddening.

I have been positive about how "well" my pain level is for that day.  Or how "well" my mind is functioning.   I do tire of feeling like a "woe is me" or "Debbie Downer," or a "let's talk about how crappy it is for me."  I want to be apart of the society I live in but feel so far from.  I give my best smile and spunky energy to anyone I may see.  (I really think Lyme disease can help people to become amazing actors!)  I only let ot all down for my family and maybe one close friend.  Mostly I cave to my husband and thankfully he still loves me and picks up the slack without any complaint.

I have avoided talking about my disease.  No videos, doctor visits, research, or sharing my journey as much on here or on YouTube.  I've been in a constant battle between trying to feel normal and  knowing when to give up... let the day pass by.  Another always comes!   I have this to look forward to at my weakest moments.  Time will pass and I will be in less pain once this moment is over.  It's when I either take a nap, watch a movie until I pass out, or hide away in a dark hole until my senses can function again with all the noise, lights and smells.

Thankfully I've never had a seizure from Lyme.  I've thrown up only a few times because of the pain but not too many since I've learned to meditate through it or distract myself.  (Also I use ginger, or end up taking Zofran!)

I've never been wheel chair bound, although I was pretty close to it before I received my diagnoses.  I was so weak that just getting up from bed to use the restroom would make me crash for hours.

Although my pain has increased since being diagnosed and my fatigue seems the same, I have been made stronger through my perseverance of wanting a normal life.  By wanting more for my kids...  them to not be affected by this disease and to have a functioning mom.  They already give up so much.  Because my life has been slower, I see that they are gaining many opportunities to know how much I love them.  I've spent so much time with them cuddling on the couch and it never would have happened if I had been so busy as I once used to be.  I have had great talks with my kids and get to spend extra time with them.  You just cannot replace that with any activity, sport, trip or club they may be missing because I cannot keep up with a busy lifestyle.

I've become stronger in my identity of who I am and why I have the trials that I do.  I hear all the time many translations of how we are to overcome our trials...  my favorites are two.  One, that adversity can bring us closer to Him.  And two, we are placed here on this earth to be instruments in progressing his kingdom. 

How does this help me overcome trials?

Well, I will tell you. It's one thing to have sympathy for another, but empathy is true understanding. Some things are given to us, for good or bad, so we may understand them better if we but look and listen.  Instead of asking "Why me?"...  ask what good can I do for another in their time of need with what I have been given. 

I may not be helping others with Lyme disease every day, but I know from what others have told me that I have inspired them to hold on.  To keep their chins up in their trials and to seek progression as well.  I've been able to give others opportunities to serve that have helped them to feel more purpose and belonging in this world.  I have learned of the unconditional love that so many of you have by supporting myself and my family in our journey.  I've seen others lives changed because of an illness that I've had to bear...  and even though I wouldn't wish this on my worst enemy, I would do it again knowing I am helping God's kingdom. 

Our time here is short and we have much to learn.  I know my mask is currently hiding what's truly inside....  I bet yours is, too.  As I learn to show myself more and accepting that who I am is OK to be everywhere I am, I hope you can,too.  I hope we can all become instruments in His hands by allowing more to see us with the masks off.  That our trials don't make us weaker or less desireable.  That we will choose to make them glorify our lives and help to bring everyone the peace and joy they so deserve.