But you look normal!...

 One of the biggest struggles I've had in this journey is feeling understood.  Shoot, I often don't understand what I'm experiencing or why. I've gone through seasons when I desperately wanted people to understand how hard this is.  People listen and then say "but you look normal...you look good".  

I feel like if I had a different diagnosis people would get it and the support would be there.  People understand cancer and often do all they can to support that...but this mysterious unseen sickness?

The best way I can describe it to others is to think about how you feel when you have the flu.  Somedays you have fevers, body aches, headaches, dizziness, fainting, back pain.  Most people recover within a week or two weeks.  Now imagine that you feel like that every day to one extent or another, without relief for 3 years.  After a while you struggle with feeling like you can keep fighting.  Simple things like showers or making a meal feel impossible.  You have no source to draw your energy from...you're simply exhausted.

I thank God that He has not asked me to walk this journey alone.  I have a community of beautiful women all walking through the same struggle, except all of them have walked it longer than me.  I cannot tell you how wonderful it is to call and be able to talk through symptoms with them so that they can assure me it's all part of the process.

My hands are empty.  Before I had a full life...traveling, being active, invested in a wonderful community, keeping busy with things that filled my heart and my life.  Now I've had to empty my hands of all of that...surrendering it to my Saviour and trusting He can use this time in my life that feels so wasteful and meaningless (to my limited mind).

I have to struggle with feeling like a burden to my family.  My health has drained our savings.  My husband is constantly having to drive me to doctor appointments.  We have to be frugal in every other way so that I can continue my treatments.

My son asked me at one point if I was going to die from this.  As I lay in bed that day I told him that" I don't know, but that we need to trust God in the midst of this".  It's painful to see the way my health affects his life.  Thanks to COVID I can't go to his school campus, but even if I could I wouldn't be able to.

Most days I can try to do one thing a day.  That's it.  If I do more than that I'm exhausted and often feel worse the following days.  So one thing it is.  Thankfully I've been able to add 3 piano students back into my schedule ( I didn't feel well enough to do even that for many months).  On those days that's all I can do.  

I miss being out and about.  Having the energy to be able to ask how other people are doing and really listen and invest in their lives.  To be able to serve them without having to consider how my body will do in the midst of it.

I miss being able to travel.  Living 9 years oversees was a grand adventure.  Not all of it was good, and in fact in many ways it's much harder...but there's a sense of being "alive" living overseas that I have not experienced stateside.

I have had to teach myself to not care if people "get" my sickness, but it's hard.  I look at pictures of myself and ache for days when I can feel whole and complete again, fully alive in my body.  That might not come this side of heaven, but I'm thankful that I can rest knowing that someday I will be able to run and laugh and live life without pain and suffering.