The Dark Side of the Spoon(ie)

One of my very good  old friends who is also ill wrote something to me a while back that made me nostalgic and happy and sad all at the same time.   She said "In my dreams, we are still young and healthy." 

I cried for a while after that because it made me think of how much I have lost with dysautonomia.  I used to walk and garden and dance and shop and lot of other things, but I can't do them any more.  I wish I could be one of those people who are chronically sick who say things like "My illness has been the best thing that ever happened to me!" because it has made them thankful or stronger or for some other reason. 

I admire them greatly but for me personally, at times I confess to thinking, "Who are they kidding?!"  I have learned much from being chronically ill but am I thankful for the experience?  Heck no!  I think I could have gained plenty of experience and wisdom if I were perfectly healthy. 

I have tried to be strong and to stay positive but sometimes I'm not strong or positive and I think it is the set backs that really get to me.  I might get a day now and then where I almost feel normal but then it always comes back.  Two weeks ago, after having had almost a week of sort of feeling normal (and feeling a twinge of hope!) I had a complete collapse and became bedridden again followed by the long slow climb of recovery to partial functionality. 

So I pull out my arsenal of tricks to stay positive, such as the "There is always someone who has it worse than you" trick where I remind myself that there are many people in the world who have it worse than me and thus, I should quit feeling sorry for myself.  Or I try all the physical things such as drinking tons of water, trying to calm my mind to lower my blood pressure, etc, etc.  But after all this time, I am so tired of having to go through this.  I'm depressed by what I've lost and tired of having to muster up the extraordinary mental and physical strength it takes EVERY DAY just to get out of bed.  I'm tired of the set backs; sometimes I think it is worse to have a good day because when things get bad again, it seems so much more awful. 

People think it is helpful to encourage me to be positive about what has happened but I think that sometimes, it is beneficial to face the dark side.   Not the evil dark side like in Star Wars (!) but the darkness of being chronically ill...the depression and anger and grief.  

So tonight, for one night, I'm going to accept my sadness.  Sadness have at me!   Here's how I feel right now:  I want to be young and have my pre-dysautononic body!  I want to be mischevious and RUN and not be responsible!  I want to do something fun that involves MOVING!  I want to walk normally, to leave the house without hours of vertigo and weakness and stomach issues. I want to magically be transformed into a healthy being again!   

And tonight, instead of fighting the good fight to be productive, I'm going to get back in bed and remember in my dreams what it was like to run and dance and have a pina colada.   Tonight I will escape and walk on a sunny beach with my husband and pick up sea shells and eat whatever food I want without getting sick! 

Is this called the acceptance stage of grief?  I'm not sure but I have found that by allowing myself to sometimes feel the emotional pain instead of always fighting it, that I actually do feel better once I get to the other side of it.  

Tomorrow is another day and I'll put on my happy face again.  I haven't lost all hope and do not always feel like this but I wanted to get it out for myself and for others who suffer to say that you aren't alone, and that it is OK to feel the pain once in a while.

For all who are reading, I wish this with all my heart:  good health and strength and whatever gets you through the day, even if it is just writing a blog posting  to fellow spoonies.    :-)