This is dedicated to you girl, the one crying in the shower, the one crying curled up in the bed, the one crying and hiding in the closet, the one contemplating suicide Yes you, do not be ashamed, do not feel alone. Dry your eyes and listen real close. You are NOT alone. Yes, some of us Spoonies are lucky, they have most of what they need, a pretty great home life (nothing is perfect), a compassionate loving partner. Someone who holds their hand when you tremble at the Dr’s, one who is first to wipe the tears of fear away, one is who their rock. And they might even have great friends, who always have time to chat when they are at their wits end. . And how about family, I am sure some have family who are involved. Ones who are there at a moment’s notice and have their best interest at heart for the most part. A mom or dad to call after hearing their blood work, MRI results etc.
Did I just describe what you are missing, what you need? Do you find yourself envious of those Spoonies who seem to have it all BUT good health of course? Does it make you cry to see all the love that surrounds them? All the people who are there to hold their hand during some of the worst times? Do you get tired of all the pictures with the loving hubby/boyfriend gently kissing their cheek while the world is burning behind them? And they even seem to have a helpful (not perfect) health team. They just happen to have gotten the Dr who leaves his ego at home.
Well please know YOU ARE NOT alone. It sounds like you and I are a lot alike. I live most days in bed crying/screaming from the pain and wonder if someone will ever come to my rescue. I live by time tables, to take meds, to spend time with people. I was diagnosed with all these horrible diseases then got to to spin the wheel of LIFE and it gave me a bunch of things in disguise… loneliness, sadness, and whole bunch of heartache. I say disguise because when I first heard what I would have to help me get through some of this, it sounded good. It sounded like what I wrote above, someone to take care of me through thick and thin, some family members to help out, hopefully some great Dr’s and most importantly someone to LOVE me even though they were about to watch me go through some really hard stuff and possibly die at a young age. But lets just say luck is something I do not have much of. I have parents who turned their back for their own selfish reasons. Friends who “can’t deal with my health.” Or people who just can’t deal PERIOD so they take it out on me. This is ONE of my personal favorites because my body takes everything OUT on me so when people do it…its AWESOME.NOT!!! It gets so old loving people who could care less if you died today or tomorrow. If only some people could trade places with us RIGHT??? I know you feel this way sometimes too, I read part of your story. It sucks being your bodies and humans DOORMAT.
Point is I was WRONG about so many things, truth is sometimes dying would be easier than going through all we have too. **DISCLAIMER I AM NOT GOING TO KILL MYSELF SO DON’T FREAK OUT**….My health, just like yours is kicking my ass, telling me what to do and taking everything I own/work hard for. Shit, I can’t even take a shower without my hair falling to the floor or my hands being to exhausted to wash my body. And then I try to show my face outside of bed and pain and all I feel is everyone’s boots on my back. Pushing me down to the ground as to say, you ain’t shit and because you’re sick, I can do and treat you however I want. I waste so much time fighting everything in my life, as I am sure you can relate. It is like we never get a break from anything…
I get to spend 15min every month talking to the Dr while he stares off into space and then nods and says, “see you next month, now go take your piss test.” Or the other one who I believe is a great Dr but who has way too many patients so I get to sit for hours to see her for maybe 10min and we never get anything accomplished. I know it’s not nice to say, but if this disease could just touch their lives for ONE DAMN second maybe they could see us as a person suffering and literally sometimes begging them to help us instead of dollar signs…( and i know they can’t fix us but they can LISTEN and try to help)
So girl, I KNOW how you feel and I am here for YOU… And I know that it seems the easier way out is to finish what our disease started but maybe just maybe, we can help each other out. It is kind of funny when I think about it, maybe our diseases can hang out for a while and give us a BREAK so we can do something fun and pretend that this life is worth living. In the meantime, try to find someone who WILL listen, maybe you need to just SPEAK up and if that does nothing. Move on….moving on will hurt…BUT you are hurting now! There is ZERO cure for us, why should we waste it on people who take us for granted, who treat us like a number (some Dr’s), some people have no idea how special we really are. I hope you know just how special we SPOONIES are! Keep living, keep fighting, God did NOT put us on this earth for NOTHING ….He had a much BIGBER PLAN FOR US. Remember when one door closes , two more open….I believe that with everything SPOON I have today…Hugs