Finally a break in the clouds! The Cute and I both felt well enough to venture out into the world again! So a trip to our favorite coffee shop for ipad time seemed like a good low key start. So here I am blogging from somewhere out of house…it feels magical. And this depresses me just a little. Before baby, I was a wander bug, a gypsy. I had a house but I was never home. I hated staying in one place. Now a little coffee shop trip feels like an adventure. I have become that boring woman I never wanted to be.
I hate that I feel that way. Isn't there some moment where I'm supposed to feel content in my choices? Feel full from the glow of motherhood. The way society paints it…I should be in bliss right now. I should be spinning in circles with my child laughing in my arms…a smile of contentment permanently stamped on my face. But the reality is much more mundane. And frustrating. It's just so hard finding myself in this new world if motherhood and chronic illness. I always feel like I'm just hanging on instead of living. Holding my breath instead of breathing. Sigh.
It doesn't help that I have no support at all. Our families have nothing to offer and our friends have too much on their plates themselves. We never have a chance to date and I never have a child free moment during the day. I hope it changes a bit when he's in school. But then I will have to face my illness head on. I won't have the luxury of blaming my situation on The Cute. He's such a good excuse. But when he's out of the way… I will still have to fight the pain.
Backstory: Twelve years ago, my illness began…well, at least that's when the annoying parts showed up. It started with fatigue(sleep on the floor cause I cant make it to the bed kind)and a blurry eye…then the pain began to show. At first I thought it was some lingering issues from a couple injuries I had suffered but it got worse instead of better. Digestive problems, sleep issues, and weird anxiety followed soon after. Soon the list of symptoms grew to fit two pages. The doctors tested for everything and despite the occasional weird lab…nothing seemed to be wrong. They started suggesting it was psychological. I backed down in defeat and learned to just live with it. It was manageable.
Fast forward to pregnancy nearly five years ago…six months in, my hips were locking, my hands screamed with carpal tunnel, and sciatica claimed my every thought. My blood pressure jumped all over the place…first so low as to cause fainting problems and then so high that my right eyeball popped under the pressure. Yes, you heard that right…MY FUCKING EYE HEMORRHAGED! Holy batman, I was irritated. After the birth the list of symptoms grew and changed even more…weird heart issues, chronic colds/flus, worsening digestive issues, an extreme salt craving, extreme shoulder, neck, and lower back pain, gallbladder issues, muscle spasms, weird patches of numbness, cold hands and feet that are painful to the touch, and a raging heat intolerance that keeps our air conditioning at 70 permanently. And that's just the big ones! Needless to say, every morning is a lesson in motivational thinking.
After a horrible journey through the health care system, I was finally diagnosed with fibromyalgia just so that the doctors could stop thinking about it. But it never fit… Now after all that time, I think I have figured out what's wrong…dysautonomia with a side of mild undiagnosed autoimmune. Now I just have to get a doctor to take it seriously. I have PTSD from the bad experiences with Drs(and I don't use that term lightly….the travesty that was my first foray into this medical wilderness is long enough to fill several posts. I will tackle it another time). I have so much anxiety even thinking about starting this journey again.
Now at present…four and a half years later…I have a huge stack of bills from all the co pays and tests. A marriage that was rocked to the very foundation, and a beautiful four year old that has trouble understanding why mommy gets sick so often. It's changed every ounce of my life. I have literally had to relearn how to live my life in this new alternate dimension.
The worst part of all? The isolation. I look fine. Being an an ex-abused child, I have exceptional coping skills that leave me looking like I have it all together. But its a farce. I'm always one step from bed. And I'm always playing catch up. And even my husband can't seem to get it. He can't seem to understand the effort it takes to do the smallest things…like washing dishes or showering. He resents the cold apartment, the bills, the mention of pain. He, like most people, sees us on the same playing field. That a sleepless night for him is the same as a sleepless night for me. But it's not. A sleepless night for me can mean exceptional pain and the onset of a two week flare of severe flu like symptoms. He doesn't understand that I am constantly working with a deficit as the pain meds, that make life bearable, make life fuzzy and dull. And the normal every day stress that can make life a little difficult for him, make me feel like I'm dying. My heart rate soars to 140 and higher(I was diagnosed with intermittent tachycardia so for those of you about to suggest panic attack…it's not), my blood pressure drops to staggeringly low levels, and I suddenly have severe pain and dizziness. And that's just with the average argument. Real stress, like my mother's multiple hospitalizations or my recent gallbladder surgery, cause epic proportion melting that can last months. But I can't really blame people for their ignorance. I do look fine. And if I could walk away mentally from this nightmare, I would. As for my husband, I know he tries and he does love me… I just think that he can't handle the reality of my situation. If he fully allowed himself to understand, well, I think he would go nuts with worry. He hates to see me in pain.
As for me…I hate to see me in pain too. Sometimes I just hate me. And then I remember that this isn't my fault, that it's not fair but it is what it is. That it could be much much worse, and that I'm glad that it's me and not The Cute. But today I just feel frustrated and honestly scared for my future. That all the dreams I had are dead. That I will spend eternity in catch up mode. That this pain is forever …my heart starts racing…my hands shake…and then The Cute starts a “feet” fight with giggles and lots of “I like you, mommy” and I feel the panic subside. Who knows what the future holds…at least I have him now.
Wow… This post came out of nowhere. I was planning on writing about my illness someday…guess I just did.