I am sorry I disappeared for a while friends. Life has been a real struggle lately.
My health tumbled last week and I have been dealing with the grim reality of it all. I have been and continue to be one sick chick.
All last week I was very tired, feverish and in lots of pain. I still am, though today I feel like I can at least function somewhat. The joint aches were particularly bad in my hands and arms, which made it impossible for me to type anything. I had cluster headaches for four straight days, so severe that they made a migraine feel like a cake walk. The glaring light of my laptop only made the pain worse, so I stayed offline as much as I needed to.
In going through all of this crap I wasn’t exactly motivated to blog. My spirit was suffering. It still is. I’m back here, but not in the way I want to be. I have been battling feelings of worthlessness. I have literally stood at my bathroom mirror, not recognizing this shell of a person I see staring back at me. I am now too acquainted with the cruel cycle of hope crushed by disappointment. I am tired of everything: pain, isolation, uncertainty. But I am especially tired of doctors, and the broken system they represent.
The day after my last post I had a visit with one of my doctors. I have only seen this specialist a few times. With her I lack the connection I have with my primary care doctor, and it is painfully obvious every time I sit down to chat with her. After going through my lab results and discussing the failure of my recent drug regimen, she noted that I have lost eight pounds without trying to.
She then looked right at me and very coldly told me that I “desperately” need therapy.
I do know that for the first time in my fifteen plus years of being sick, I am not coping well. For the past six weeks in particular I have not had a solid grasp on this. I literally do not know how to be a sick person right now. But it sure as hell wasn’t her place to say anything. I do see my primary care gal in less than two weeks and I know the topic of therapy will inevitably come up. I have to love myself enough to keep an open mind.
I find myself trying to figure out the next step; how I get well, rebuild and move forward with my life. In January I looked ahead and truly believed that this would be a big year, for personal and professional growth; a time when I would forge ahead with big projects, a renewed sense of happiness, success and what it means to live a life of meaning. Instead the year is now more than half over and I feel like I have done very little besides be a sick person. Yes, I know I am loved. I know my life has meaning. I have known the blessing of joy, and the blissful feeling of gratitude for all that is good in my life. But illness has built a wall between me and all of those wonderful things I am supposed to feel. I just don’t know how to tear it down when my body is feeling so painful and broken.
I love my husband and I know his love for me is equally as deep; but I am finding it difficult to confide in him right now. I know he wants me to, but I feel this tremendous guilt, over what lupus and fatigue and pain have done to our marriage. I open my mouth, tears threatening, and I’m paralyzed. The words won’t come out. Maybe when I’m stronger.
This morning I turned to my babies, my angels in fur suits. They listened intently. The kissed away my tears. The softness of their fur comforted my aching skin. Grace on one side of me and Jack on the other.
The very best therapists in the whole wide world.
I know I’m going to be alright. I don’t know when exactly, but it will happen.
Have a beautiful week everyone.
(Sorry to be such a downer, but it feels good to be so open.)
Friends, I’m not starting the week off in the way I really want to.
Today is a particularly bad pain day. It is a particularly bad energy day, too.
The sensations meander around my body. At best, it feels like my limbs are on fire. At worst, it feels like I have one of those brain freeze headaches, pounding in my head and over every inch of me. Instead of a merciful few seconds, the feeling lasts for a relentless hour or two. I won’t lie. It makes me have thoughts I am not proud of. I think about how I don’t want to live like this. I contemplate how much I have lost, and how much I stand to lose as this continues. I battle with how pointless my life feels sometimes.
In moments of extreme weakness I flirt with the idea of risky behaviors, like taking addictive painkillers or drinking alcohol, anything to make it stop.
But I won’t.
Because ultimately I love life, and I love myself too much to do those things.
Today I had every intention of writing something really inspiring and meaningful, to start what should be a beautiful week. Instead I have to embrace short, sweet, brutal honesty. My spirit is willing, but my mind and body are weak. My fingers can barely move as I type this. I am struggling to find my words.
Just as I love myself enough to not indulge in dangerous things, I also love myself enough to know when to stop and be kind. To me.
Today I choose self care, and I will choose this as long as I need. I also choose to know the beauty that is all around me. When I got out of the shower this morning, this is what I saw.
And when I was resting on the couch this afternoon, my little guy got right up next to me. His warm little body gave my heavy heart so much comfort.
Who think I’m the best mommy ever, no matter what.
Life really is beautiful after all.
Have a blessed week.