A couple weeks ago I had a particularly hard week. It started with Social Security telling me I was no longer disabled, which meant going to their office, starting the appeal, getting info to/from my lawyer. This sent my body into a downward spiral. Top it off with a horrible chest cold (didn’t help my asthma), then my period and OY VAY!!!!! My mother took over for me since I could barely get out of bed. I even had my daughter help get me clothes out so I could get changed.

Now, my daughter is 8 years old. She has such a big heart. She broke down telling me how she wished God would just take away my MS. It seems like a whirlwind to her, always changing and she didn’t know what to do for me! She wants to help, but she wants me to do things with her, on and on she went. I was near tears. I told her how proud I was of her sharing her feelings with me, and that she always could, no matter what. My hubby and I sat with her and he told her he is much (much) older than her, and he didn’t always know what to do. Then I told her I HAVE IT and don’t’ always know what to do.

Ain’t that the truth! I don’t. Everytime I think something will help; it may once, then not again. I feel like I’m on a rollercoaster and I want to get off!!I try to read my body, “Listen to your body” I’m always told. Guess what? I can’t always understand it!!! Trying to adjust to that type of life is hard. It’s hard for me as the adult. As the sick one. The one who feels things people can’t see. I know it’s hard for adults who don’t have it and are caring for their loved ones who do. They can’t see what I feel. It’s easy to forget what you can’t see. It is so frustrating for me to have to remind people, frustrating for them to keep it in mind.

Now put yourself in an 8year olds position. Mommy has been sick for years with something I can’t see. So hard to wrap your head around it. THEN it changes ALL the TIME!!! I have a good morning; I can then have 2 crappy days in bed. Then a day or two ok, and then crash. I never know!!! And we expect her to be consistant with things; behavior, manners, school, etc (can’t imagine what she goes thru).

I feel sad. I get upset. She tires me out with her attitude some days, and though I tell her this, I also want her to know the MS is NOT her fault. Then I feel like it’s my fault she feels so twisted up with her emotions. It is ever changing.

No quick fixes here. We must keep communication open (also hard for an 8 year old sometimes!) I told her God gives us what we can handle, and I believe He has a purpose for us to learn from every situation He gives us. WE may not know what it is. HE does. Knowing that gives me peace on most days. There are days I just want to scream or cry. That doesn’t mean I don’t have faith in Him. I am just human after all. I always have pain and fatigue, just differing levels of them. That doesn’t mean we can’t be happy. It means we have to try harder, and cherish the days we have, the times we can do things together. Because I never know when I can do it.