Dancing on tip-toes

Well so far this week has been so-so. My meds were just upped, so usually that means that my pain levels on average are reduced for a couple of weeks. Today though I am trapped in bed by spasms, exhaustion, and weakness. My eyeballs feel like they have weights on them. I am sure I am feeling crummy all of the time due to stress. The good ole' stress monster that attempts to rule and screw up my life. Yet again personal relationships aren't perfect. Which is so hard because I have a hard time giving the people in my life a whole lot of compassion, and whats ironic, is that that is one thing that I want from my family and friends. I am having difficulty understanding why people have such huge expectations for me. It takes so much of me just to function with my high pain levels and my constant nausea. There are so many side effects to my illness and my meds so even though the pain is so excruciating, it is just the tip of the iceberg when it comes to my daily stresses. My body feels like it's been literally beaten up daily, hourly, even some days by the minute. I struggle just to maintain a smile, to laugh, to see things optimistically, to have even one positive mantra. So when others expect me to do more, the extra mile, I get so frustrated. Alot of my illness can be controlled (good or bad) by stress levels. I know that I am not by any means perfect and neither is Chintan or my kids, but right now we are by far not living, we are just surviving. Our house isn't immaculate, the kids don't always look perfect, I rarely wear makeup or get in the shower (I know that it's gross but this blog is about my reality and showering is extremely painful, so I sponge bathe a lot.) Most of the things in our life are put on the back burner, because priorities are re-adjusted not because of what's important in that week or month but because of what's important in that minute. We have very little help, it's mainly Chintan, me, my cousin and my mom. And I do understand that, people are very busy and just because I am terminally ill does not mean that people's lives have to stop, but because I need to be realistic about that others need to be realistic when it comes to expectations for us. I don't want nor do I expect others to tip-toe around me, but I can't do it for others. Life has become extremely honest and up-front for us, very "in your face". Trust me a lot of this I'd rather be in the dark with most of this stuff, but it just can't be. Patients, compassion, and understanding needs to be a must right now. We have a lot of big decisions to make right now, we need alot of things that just aren't possible, and we can't accomplish everything that is in front of us right now. I also do know that as adults there are certain things that we can't just ignore, we still have a responsibility to life that we just can't get out of. Just because I am ill, Chintan works 80+ hours a week, Lydia has autism doesn't mean we are excused from life's necessities. But is it easier to just put things on the back burner when we are overwhelmed, to just lay on the couch when things seem too crazy? Absolutely. I think in some ways that is human nature. Not to mention the fact that Chintan and I have always been laid back, chill type people. We are definitely not the "serious" type. And now that life has taken this unexpected turn, I think it's our defense mechanism just to stick or heads in the sand. Is it right? Is it the "adult thing to do? Is it responsible? Heck no! I am not proud of it, nor is Chintan. It causes a lot of tension in our relationship. But he is stressed to the max, exhausted, and feels pushed up against the wall and I am in constant excruciating pain that has taken everything away from me. So therefore we will make mistakes, we will do the wrong thing, we will be irresponsible. To be honest it's just hard enough to be good parents right now. And we both focus so much of our energy on parenting responsibilities that adult, marriage, friend, family responsibilities fall to the wayside. I know I don't feel good about it, but I am so tired and so overwhelmed that sometimes I just don't care. Now that I am terminal honestly I just want to be around people that offer something positive to my life. Whether it be a good joke, a funny story, a life lesson, or comforting shoulder. So bottom line of today's blog: I know we are not functioning at a high level, I don't want people to tip-toe around us, but I would appreciate some slack. And if we are driving you nuts because we aren't living life to your standards then just either keep it to yourself or cut ties. Because right now we are looking for support, love, friendship, compassion, and understanding. To all of you out there reading this we will continue to do things that piss you off, make you scratch your head, or disappoint you, but honestly none of it is intentional. I love everybody very much and appreciate all of the prayers and love out there and I would never intentionally hurt a soul. So search your heart for some compassion. Because I promise if roles were reversed or even if not and one of you needed a friend, I would be there. On both sturdy flat feet, with wide arms, and an open heart.
Love you all and thank you again!!
Chrissie