Frustrated

This morning I woke up exhausted.  Even though I had plenty of sleep, I woke up just beat.  It’s Sunday morning though, and I will not miss church.  So, I got up, got myself and the kids ready and we headed on off to church.

On the way there, I thought about turning around and going home, but no – I am NOT missing church, so I found a place to park and took the kids in to find a place to sit.

Because I’m on immune suppressants, I try my best to sit up near the front of the church.  I do this for two reasons – 1. I’m not surrounded by people and 2.  I want to receive from the cup – the less people who receive from the cup in front of me, the better.

The kids and I found a place to sit and then BAM – exhaustion hit.  I can’t even really call it exhaustion – it’s more of an extreme weakness.  My arms go limp, my legs go limp and then I even feel it in my lips, my tongue, my jaw.  It’s a feeling that’s so hard to describe, but it’s pure exhaustion and weakness.

So, instead of listening to Fr. Sylvestre’s homily, instead I am pep-talking myself into making it “just one hour.”  At the end of his homily, I decided it was time to go home.  I ushered the kids out of church and needed my daughter’s assistance to get to the car.  God love that girl – she gave me a big hug, told me she loved me and helped me to the car.

Of course, people I knew were sitting all around us and I’m embarrassed. I don’t want people worrying about me.  I don’t want any attention over this stupid disease.  I don’t want my daughter to have to support me because I’m too weak to make it to the car myself.  It’s not fair to my kids to have a parent they can’t rely upon.

I truly hate NMO right now.  My dog needs to be walked (he’s hyper as can be) and I’m too exhausted to take him out now.  Poor dog.

It’s a beautiful September day where I should be out and about with my kids celebrating life, celebrating this beautiful country of ours, celebrating those people who lost their lives this day 10 years ago.  Instead, I am going to take a nap – not because I want to, but because my body can’t physically stay awake, because my body is so weak I can barely keep my head up, because my hands and feet are so swollen because of who knows why and because I have this crappy disease that has no cure but attacks with a vengeance.

I really hate NMO.

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This entry was posted in Devic's Disease, I'm a big dork, Multiple Sclerosis, Neuromyelitis Optica, NMO. Bookmark the permalink.

3 Responses to Frustrated

  1. Corenae O'Green says:

    Michelle…know we hate this disease right along side you! I hate that it is doing this to you. I am praying for you daily and know that you are LOVED and deserve MORE! your dearest friend, Corenae

  2. samantha mclinden says:

    I think of you and pray for you every day, Michelle. As moms, we feel that we need to be there for our kids ALL THE TIME…sometimes we can’t be and we need to accept that, just as the kids will too. I know you hate feeling this way, and know that all your friends are here for you and I will help you out any way that I can. Please let me know if I can do anything for you, REALLY!!!!! Sam

  3. Leeann Niccolini says:

    Sometimes the best thing to do is give someone a hug, listen to them, cry with them. I’m not there with you in person but I’m listening. And sending you love and care.
    Xo

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