Monday, January 11, 2016

The Lament Of A Chronically Ill Mama

Sometimes, when I wake up in the morning and I take a look at the calendar, I often catch myself wondering where the time has gone. I can’t believe how quickly the years fly by. Syrus is going to be six this year. It's a brand new year, and just like all the others before it, it is going to just FLY by us. 

There are so many things I think about doing. I think about going to the beach, basking in a chaise lounge, taking in the sun, building sandcastles with my little boy, and taking a cool and refreshing dip in the ocean. I wonder what it would be like to be able to whisk my family away for the weekend, driving to the shore, staying in an ocean-side room and having tons of summer fun. I think about hosting backyard barbecues and having friends and family over, cooking up delicious summertime foods, indulging in a few cocktails and having some wonderful laughs. I dream about chasing my son around without fearing the consequences.

But the reality of it is, I just can’t. I’m one of the millions of moms who is living with a chronic illness. I’ve been living with them since I was fourteen years old. More often than not, they make life a rather difficult thing to experience, and I mean really truly experience. When I was a teenager, I fell into a deep depression, I had to pull out of high school and give up my dream of becoming a nutritionist. I was home-schooled because it was just physically impossible to go to school everyday. Pile on top my mental illness diagnoses, and it was a recipe for disaster. I'm also so afraid that he is going to inherit my problems. As it is, he has been complaining about heart palpitations and now has to go for an EKG, Echocardiogram, a 24-hour heart monitor and bloodwork. I'm a nervous wreck.

Between the Fibromyalgia, Endometriosis, IBS, GERD, Degenerative Disc Disease, Anxiety, Sciatica, OCD and MDD, I’m a walking mess of physical pain and an emotional trainwreck. On the outside, I look just like any other typical 20-something mom. But my body is my enemy, it is screaming on the inside. To be honest, it’s hard to get out of bed in the morning. I don’t just mean the typical “I don’t want to get up,” thing, but a deep physical aching pain, something akin to the flu, that keeps me sequestered indoors most of the time. I’m even going to confess something that I don’t tell many people — I stay in my pajamas for a good part of the week. Before you ask, yes, I wash them! But, regular clothing is just too much for me to handle sometimes. Yes, many fabrics can physically hurt. I’ll get dressed to go to my in-laws each week, or to go to a doctors appointment, but that’s pretty much it. A good explanation about chronic invisible illness and our energy levels is The Spoon Theory by Christine Miserandino.

I’ve since received plenty of therapy and probably ingested enough medications that could tranquilize a horse. It’s been a long road, and most of the time, I think that I am in a good place, one where I can at least be happy with my life. But I find that there are days where I become down on my self, where I wonder what it’s like to be a mom who can take her child out to the playground spontaneously. I know I’ll never be a soccer mom, or at least an involved one, but I wonder what the future will hold. Will I be able to make it to my child’s sporting/activity events?

I fear that my son will come to resent me. I’ll admit it, I am scared of that. Sometimes, I feel as though I am in this constant limbo of making my son happy and compromising my health, or taking care of myself and possibly disappointing my son. That is the last thing that I ever want to do. Like any other parent, I want to make my child happy. But on the other hand, I know that I can’t live my life in fear of that. Deep down, I know that in order to take care of him and to be the best mother that I can be, I have to take care of myself and I have to put my health first sometimes. Even if that means that I can’t take him to the beach, or go to the playground all of the time.

I know that all I can do is my best and be there for my little boy as he learns and grows each and every day. There is nothing more valuable than the time spent with him, no matter how that time is spent.

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