Sometimes the tears are just below the surface.  There are days that just updating my Facebook Fan Page with the latest news from my various doctors appointments and medical treatments makes me want to burst out crying.  Sometimes it’s because I want to scream at the universe, “Why me!?  Why are you doing this!?”  Sometimes it’s because just one person comments and I can see that they understand and to be understood in the life is a pretty major thing.  Sometimes, all you need in life is to be understood.

When it comes to my family and friends, I feel like I have lost my sparkle.  I feel like I have on my blog too.  So many challenges, constant set backs and constant pain for the last year (between the carpal tunnel and now arthritis).  It just feels like I am often at a loss of what to say.  I can complain again.  I can have my pity party.  I can tell you that I’m still doing what I can in my best, most optimistic voice, but the truth is, I’ve become a bore.  My whole life is centered around my disease now and I feel like my body has become a prison.

I Have Lost My Muchness

I was watching the newest Alice in Wonderland movie with Johnny Depp.  In it, the Mad Hatter says to Alice, “You used to be much more… ‘muchier.’ You have lost your muchness.”  And that is pretty much how I feel.  Deflated, less than whole, not quite who I used to be.

I once was a girl who laughed loudly, talked even louder and always had an upbeat ting to say.  A co-worker once scoffed at the idea that there was anyone in the world I couldn’t get along with or didn’t like (she obviously doesn’t read my blog, and it’s possible that some of my bitchiness is exaggerated because I can be so uncensored here).  But that’s who I was.  I could out drink most of the boys, but still get dressed up with the girls.  I could be the life of the party just as much as I could be a fun gal to just sit and chat with in a quiet corner.  I am not, by any means, truly extroverted, I’m an introverted extrovert (it’s a real thing, I swear!), but it just seems like I am 100 shades of gray where I used to be vibrant.

I have lost my muchness.

And the tears are always there.  When every day is a struggle to do basic things to care for yourself, it’s hard to feel any other way.  Maybe if it had all come on gradually.  I often wonder how I might be coping if my carpal tunnel had been slower to take full force and if my joints had ached just a bit before being diagnosed.  Instead, I woke up one morning with severe carpal tunnel with no warning and had surgery just a few months later.  And the surgery didn’t work.  And then I got hives, went to the ER, and then woke up a day later unable to walk with no warning.  And my life has been upside down ever since.

We all need to feel understood in life, but so often I don’t.  My husband doesn’t really get it, my friends definitely don’t, and my family… well, who knows, I haven’t heard from a single one of them.

And so I am going through a roller coast, a tidal wave, a electric lightning storm of emotions at any given moment, worried about the loss of my muchiness.  Worried about the bore I’ve become.  And desperately searching for someone who understands what it’s like to be in my shoes.