I’ve been talking to you a lot lately. Handing out advice, and asking you to join my group and follow me. I’ve asked you to share personal things with me and answer questions. You might be wondering who I am. What else is there to this Jen Hardy than what’s on her about me page? Is she really chronically ill?
It’s true, I am not well. That’s why I started this blog. Being positive has really helped my attitude and relationships, and even my pain. I needed to share my new positiveness with you, so you could feel better too.
I consider myself beyond blessed to have an amazing, supportive husband who really is the prince of my dreams. He takes such good care of our whole family, loves me, and would do anything to make me happy. He cooks when I don’t feel well, doesn’t make me feel guilty for spending so much time in bed (but I still feel so guilty!)
Here’s the deal–I don’t talk about him much because I know that there are so many Moms who are struggling alone. You’re either single or you have a partner that just doesn’t get it. I don’t want anyone to feel bad when I talk about him. So he’s there, in the background. My soldier for our country (retired) and for me.
But all this positive talk, well…I want you to know that I’m not setting myself up to seem like I always have it together. I’m struggling too. I worry about what if…. And I worry about what’s for dinner.
Today I woke up, still unshowered, from my nap at 1:00pm and looked like this:
45 minutes later, I looked like this:
I’m not saying that I look wonderful. In fact, I could really use a makeover. No really, any beauticians in Brentwood/Nashville up for it? But it does show the difference between what I look like normally, and what I look like when I put myself together.
It also goes to to show what a shower and a smile can do too! One of my goals this year is to be up and bathed and dressed by 11am. I do feel better when I look nice. I wear my Chronically Positive Mom shirt on days when I’m feeling especially rough. It reminds me to focus on the positive, and every time I look in the mirror I remember it’s going to be OK.
Silly? Yes, but I have a lot of shirts that speak for me. I had one that I wore to my latest neurologist that said, “Help me, I’m sore.” I told the nurse it was because I wanted the Dr. to remember me. She smiled and said, “don’t worry honey, he will anyway.” That’s what a crazy rare disease will do, I suppose.
What’s wrong with me, you ask? I don’t usually talk about it. I’m a pretty private person (no really, I was until this blog came along) Also, sometimes people with illnesses have this underlying contest game going on called: “I’m sicker than you are!” And I don’t like to play.
But if you’re wondering what this Chronically Positive Mom has going on, here it is:
- Back problems; herniated discs, stenosis…
- Belly stuff—let’s leave it at that
- Food allergies, like casein (all dairy) and gluten
- Neuropathy: pain & numbness, (I can’t even use a touch screen without a stylus because it burns my finger) I also get painful sensations when nothing is touching my skin. It covers my arms, hands, legs and feet
- Sensory issues (my senses work overtime. One of my superpowers is that I can smell things like a police dog)
- Sleep apnea (anyone else out there have that fun machine? Hubby does, we sound like dueling Darth Vaders when we sleep!)
- Last but not least (in fact, the worst awful thing) is a mystery muscle-wasting disease that none of my 10 neurologists have been able to figure out. So while they ponder, my muscles all over my body (including the ones I use to swallow) are atrophying. I’ll share more about that one after my next appointment
- You can top that off with a sprinkling of anxiety and depression (caused by what I’m going through and the fear of the unknown?) Those things tend to go with major diseases.
That’s the main stuff. I don’t really think about the other things. Basically, if your body needs a part to work on a regular basis to keep you alive, my body wants to shut it down.
THAT’S WHAT MAKES ME A SUPERHERO — I KEEP GOING!
AND YOU DO TOO!
It’s lonely lying there in bed thinking about the pain and calamity happening inside of my body. I can’t do it alone, but together, we can get through all of this. We can get out of bed, get cleaned up, go outside, talk to other people, and LIVE.
MOST IMPORTANTLY, I NEED TO STOP SELF-FOCUSING
Look into my beautiful children’s eyes, and see the beauty and love there. I find my reason for everything.
I wish I could remember that every second. The sweet innocence of my children. The joys of childhood that are fleeing with each day that goes by. Some days I feel so sick, I’m totally focused on me, and I’m not the Mom I want to be to them. The Mom they deserve, and the Mom that I want them to remember. I remember the way my older children would look at me when they were little too, like I really WAS their superhero. Now they’re grown up with homes of their own. I’m so thankful that I valued them when they were young. There’s nothing like the sweet touch of small fingers in my hand…
But I digress, what I’m saying is that through it all, THEY ARE THE MOST IMPORTANT THING FOR ME TO FOCUS ON. How much more beautiful is my child than my sickness? They are a much better focus! They help me find joy and peace. Yes, it’s all supposed to come from within, but when within is broken, sometimes we need to find other things that keep us moving forward.
So that’s me in a nutshell
I hope you are feeling well today. I know I’m feeling better now that I’ve bathed and joined the human world. And I’ve talked to you. You mean a lot to me, even though we’ve never met. I know you’re out there, experiencing something similar to me. I don’t feel alone any more. My kids aren’t the only ones with a Mommy like me. Maybe you’re better, maybe you’re worse, but you’re THERE.
And YOU ARE NOT ALONE!!