A New Normal I Just Can’t Get Used to Today

I’m usually super inspiring and see the beauty and wonderful lessons I’ve learned from having a childhood that had horrible trauma and my subsequent chronic illnesses. Today I’m not ok. I’m feeling a little mad and a whole lot of sad and grief.

In comparison to before I became really physically ill, I saw my son usually 50% of the time with periods of where he was with me full time. I rarely see him now. I’m lucky if it’s once a week. I love him beyond what I’ve ever experienced and my ability to love him transcends his imperfections, which I used to think if he was misbehaving, it was a reflection that I was a bad mom. What I’m trying to say is I’ve really worked hard on becoming a mother who unconditionally loves her child as I certainly never learned it from my mom. Being around him is light for me, so rarely seeing him is painful and hurts more than I can ever express through words.

The whole reason I speak of all that is I was gifted money for both of our upcoming birthdays to take a very modest beach vacation. Our destination was about 8 hours drive from the house in the direction of Southern California. About 5 months ago, we took a beach vacation and while it was difficult for me with my chronic pain and fatigue, I did it with relative ease.

We are day 4 into our “beach” vacation. We haven’t seen the beach. I’m cranky as we never made it to our destination as my chronic pain is now debilitating and my fatigue is worse than I’ve ever experienced (bad gluten exposure. I have celiac disease). Nonetheless, I feel horrible and crabby and like a horrible mother as I haven’t come through on anything close to a vacation. He seems content to be sitting in a budget motel watching tv, but I’m not ok with it.

When you really start to accept that your chronic illness means it will never go away and you will be sick forever, people talk about experiencing a “new normal”. I was good with my new normal that meant I had to rest a lot, had pain I could decently manage through gentle yoga, an anti inflammatory diet, and some exercise, but could still manage to push through to be spontaneous just enough to not feel crazy from being sick and stuck in my room. I could at least pretend that all was well in my weekly visits with my son. I could appear “normal”.

I can’t hide it. I use a mobility aid most of the time. I fall over, HARD, often. I’m facing a lung and bone marrow biopsy in the near future to find out exactly what all these tumor like growths are throughout my body (we are pretty sure what it is, but I don’t want to announce until it’s certain).

I worked SO hard to overcome my C-PTSD and continue to work on it. I feel mad that I’m now so sick that I can’t reap the benefits of healing emotionally. I feel scared that I went from uncomfortably ill to rapidly moving towards totally disabled. I’m just feeling mad. I’m feeling it’s unfair. I’m grieving for all my friends with chronic illnesses that aren’t readily understood and the financial ramifications of being single, homeless, no way to work, and worse. I mean I am lucky that I have a safe home and generally just enough, and when I don’t, I know some generous people.

So many people with serious trauma are really physically ill. The connection is real. It’s hard and today I’m saying “why me?” Today I’m saying it as I see how my precious son is affected.

I have to remind myself and all of you that we didn’t choose to become sick. We didn’t choose our trauma and if you’re lost in mental illness, you didn’t choose that either. I hope I can become something of all of this to pay it forward to people like my dear chronically ill best friend/chosen sister and so many others as none of us should have to be this way.

I’m lucky that I’m just on a beach vacation gone wrong. I just grieve that my body is declining. I’m afraid I won’t be able to reach my goal to be service to others through my writing.

I won’t stay in this emotionally ugly place long. I’ll go hug on my son. I’ll make him take a short stroll in some nature nearby. After all, I happen to own a rollater with huge tires that can go “off road”!

I’m just sorry for me today. I’m sorry for you, and today I’m especially sorry for our children.

Ok. Time to engage in a bit of self care.

Love

Lizzie

2 thoughts on “A New Normal I Just Can’t Get Used to Today”

  1. I’m sorry it’s been such a rough week, Lizzie 😦
    I used to work with a youth pastor who would say, “Kids spell love T-I-M-E.”
    Evan being able to spend time with you (even if it’s a hotel and not the beach) is pouring love into his impressionable heart.
    Love you, my friend.

    Like

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