Life with CIDP

It hasn't been the best of weeks, but it also hasn't been the worst either.  I am hoping my extreme tiredness is just lingering aftereffects of overdoing it.  I don't know if my mind will ever understand I'm just not able to do what I think I can.  I can't seem to figure out how far to push myself and when it's time to rest.  The heat is definitely exacerbating everything.  It is draining and makes me want to pull my skin off.  It makes me feel like I'm being stuck with pins all over and it becomes harder to get a deep breath.  I swell so much I almost can't bend my ankles, my lips start becoming numb and I can see the tops of my cheeks.  I've wondered if I have forgotten a dose of my Lyrica at some point this week because my legs have felt like I have electrical shocks going through them.  My feet have been heavy.  I missed the step coming in the house Wednesday and fell.  I noticed while trying to fold clothes yesterday my arms are weak.  My fingers have been inflamed, so it's been hard to write or type.  It's was hard holding my fork at dinner last night.  It's been hard to sit up straight and my head has been boggling.  I'm having trouble sleeping because I can't get comfortable due to the pain.  Being tired adds to the issue of my left eye not being able to focus correctly because my eye muscles are losing strength.


It could be worse.  I can walk.  I can take care of my basic needs without much help.  I have avoided having a migraine for a little over 3 weeks now.  I'm not having to go through seemingly unbearable treatments right now.  I haven't been in the hospital in a year.  It could definitely always be worse.

Even though the heat is magnifying my symptoms, I deal with most of this all the time.  It's just part of living with CIDP.  It's not easy.  Dealing with the physical symptoms is hard enough, but it also leaves me isolated at times.  I am blessed to have the most amazing friends a girl could ever ask to be given, and to have been given so many of them.  Seriously.  They come by to bring me a Sonic drink and just visit.  Typically the same friend picks me up for bible study, but if she can't, there is always a friend standing in line to fill in for her.  Sometimes they come and get me and take me to their house so I can hang out on their couch for the day.  They take me to lunch or bring lunch to me.  They bring me dinner.  When Nathan has be out of town, they are right there making sure I'm taken care of... bringing me dinner, dropping by to check on me and whatever else needs to done.  They are encouragers... sending me text, emails, notes in the mail.  If I need them in any way for anything, they are there... eager and willing.  Yes, I am blessed.

But they have lives too.  They have families they have to take care of and other responsibilities.  Even though I have many friends, it never fails there are times when all of them are busy and unavailable at the very same time.  It's hard and depressing.  I throw huge pity parties and become totally self absorbed.  I forget every blessing I have and focus only on the hard things.  I don't like those seasons, and I dread them coming.


It feels like I'm in one of those seasons right now.  Two of my best friends are out of town for 2 weeks on vacation.  One of my other best friends is currently preparing to move 2 hours away... that in itself is devastating.  I sob every time I think about it.  Others are getting back into the swing of school.  A couple of friends have had sick kids.  My family has gone back to school this week.  They leave at 7:10 every morning and don't get home until between 6:00-6:30 every evening because of after school activities.


A couple of days ago I called a friend I hadn't talked to in quite awhile to check on a friend who's mother is dying.  I worked with both of these friends for 17 years.  I lost my job when I got sick.  It was so hard.  It took me 3 months to touch the stuff that had been packed up from my desk, and even then I just took out my pictures and threw the rest of it away.  It was like I had experienced a major death in my life.  I hardly ever talk to my friends I worked with because they are so busy.  I spent 7-8 hours a day with them, for 17 years, and in a blink of an eye it's gone.  I miss them so much.  Honestly, there are times I just sit and cry about it.


Everyone is busy but me.  Life seems to keep going for everyone else, but my life seems to be at a standstill.  It can be so lonely.  I feel cut off from the outside world.  Why does this happen, and why is it that all of my friends and family can become super busy at the exact same time?


I don't know.  At least I don't know all the reasons why.  But I do know this, during those times the Lord is calling me to cling to Him.  I think sometimes, well I know sometimes, my friendships can become idols in my heart.  Instead of running to Jesus, I run to them first.  It should be just the opposite, and I'm not proud of it.  I do it though.  Often.  I think when my friendships start becoming more important than my relationship with Him, He allows those friends to fade away for a season.  He allows their lives to become busy and leaving them unavailable to me causing my need for Him to become the priority.

He never leaves.  He never takes a vacation.  He never becomes too occupied to meet every need I have.  He's there, always and forever.  He is the greatest blessing I have ever been given.

I don't feel well today.  I would love to be spending the day with a friend.  So, that's what I'm going to do today.  I'm going to spend the day with Jesus.  I'm going to turn off the TV, put on some music and work on my bible study... and spend some time praying.  I think I also need to just spend some time be still and listening to His voice.  It's way overdue.