I’m an optimistic person to a fault.  Everyone gets the benefit of the doubt, even if they have previously proven me wrong.  There is always a silver lining, there is always a way to laugh at your misfortune or, at the very least, learn from it.  I can look at my situation and say, “I never knew what I was capable of” and know that that is the truth and a blessing.  

Who Will Hold My Hand

I’m so very tired.  I’m so exhausted from being the upbeat optimist that knows this is just a glitch.  I’m thirty years old, this is my life forever and some days the optimism just isn’t there anymore.

The trouble with being an optimist is that everyone looks to you to hold everything together. In times of trouble or stress, you are the one holding everyone’s hand, hugging them warmly and saying that you just know everything will be ok.  But who is holding YOUR hand?  No one.

I wake up each day and struggle with the most basic parts of life.  Going to the bathroom can be so challenging that sometimes I lay in bed for hours because I just don’t have the energy or the pain tolerance.  I cry because I can’t reach my feet today so I can’t put on new socks.  And let me tell you, that putting on socks might actually be the hardest part of my day.  And I am only able to do it if in bed and bent at a certain angle.

Most days I can wake and take my little blessing and little victories and smile.  They fuel my day, they fuel my recovery.  Three months ago I had to have help getting in and out of bed.  I couldn’t roll over in my sleep, I couldn’t shower myself and I could barely wiggle my toes.  Today I can do most of things alone most of the time.  The little victories accumulated over time can be amazing.  But not every morning is a ray of sunshine illuminating my life and waking me gently to a better today.  

Optimism seems to be in short supply lately.  And while I am doing well and my various appointments and medical professionals coming in and out of my home are all excited about my progress, I can’t help but wonder when someone is going to hold my hand and tell me it will all be ok.

Seronegative Arthritis is my life now.  I’m thirty and will have this until I die.  I have an autoimmune disorder that is causing my body to attack my joints as a fierce enemy to be stopped.  I am on medications that make me feel sick, causes my hair to thin and makes me more prone to infection and illness.  I fatigue just walking to the bathroom, I’m exhausted at the thought of walking to my office down the hall, and I still can’t walk down stairs.

And while 9 days out of 10 I wake up knowing that today is a great day, that 10th day is the day that destroys me.  On the tenth day I sit in bed and wonder… While I spend all of my time and energy holding everyone’s hand, telling them this will all be ok, the ever optimistic person working hard to let everyone know that this will not break me, on the days that is has, who will hold my hand?  When you are the optimist, the person always there to carry the burden when others feel they can’t, no one ever thinks that you might one day need someone to carry your burden, just for a little while, just enough that you can rest from having carried the burden for so long.