Being a mother with this illness

Blog entry posted by mirespada, Sep 12, 2018.

I am having a hard day today, both with this illness and with being a mother.

Last week, I flew to San Francisco, CA from Portland, OR to do my yearly consultation with Stanford's ME/CFS program (I promise to do a later post about my experiences with the program because they are amazing!) . My mother and I flew alone (my dad and SO watched the kids at home) and we were gone Tuesday through Friday. Wednesday we had the doctor's appointment and Thursday, we spent looking around Japantown! That thursday was literally one of the best days of my life! I am happy that despite being so sick, I can still have best days every once in awhile.

I am paying for it now, though.

I have spent the last week ridiculously worn out and foggy brained. Every day is just a struggle for me to make it through until bedtime. I tried making dinner once for everyone this week and it was a mistake.

This morning, I woke up and didn't have the energy to even lift up my arms. My father was in the house so I kind of just let him watch my four-year-old. He's my caretaker, sort of, so we have an unspoken agreement that way.

My daughter wanted my attention, mid-morning, so woke me up by sneezing quite deliberately in my face. Looking around, I noticed she had been quite busy destroying my room while I was in a deep sleep. She pulled down some picture frames from the wall "to look at the pictures closer" and grabbed my cell phone/glasses holder by my bed and lost my glasses somewhere. Her little toys were littered around me in an army of play and crumbs from her breakfast had found themselves in my sheets somehow.

After waking me up, she grabbed my tube of Carmex and refused to give it back. When I finally got the energy to take it from her, she screamed and started one of her epic fits. My dad, who has anxiety issues, refused to come get her from my room, even though I was at my limit, overstimulated, and her cries were causing my symptoms to overwhelm me. I finally had to rally myself to pick her up and put her in his room, then shut my door, and collapsed in my bed. Seconds later, I heard little fists pounding on the door and a heartbroken but shrieking voice pleading for me.

"I want mommy! I need you! Open the door! I just want you, mommy! Don't keep me out!"

My door wasn't locked but just by shutting the door, she knew I was telling her to stay out. There was no way I was physically, emotionally, or mentally capable of handling her fit at that moment. So, instead, I listened to her crying for me from the hallway, unable to comfort her like I wanted to. After she calmed down, I forced myself up from the bed, opened the door, and hugged her close. I then ushered her back into the room and turned on a kid show, despite my noise sensitivity, and snuggled her for awhile.

"I am sorry, baby," I told her, "Mommy is really sick today and you need to be careful with me. You need to listen better or mommy has to put you in another room. I am really sorry!"

"Why are you sick, mommy? You say your sick always," she answered back.

This broke my heart a little. I realized that my youngest is now becoming aware of my illness. That something is wrong with her mom and she says she is sick a lot! What do you say to a four-year-old about this? How do you explain to her that her mommy isn't going to be like other mommy's and there will be times that I won't be able to care for her completely.

How do I tell her that sometimes her normal kid noises causes my brain to swell and I have to avoid being around her because of it?

This is what I did say:

"Mommy has bad germs in her body that makes her really sick and really sleepy. I get grumpy with you sometimes because I am sick! I try not to be but sometimes I am meaner than I mean to be. But mommy loves you and you are a good girl."

"If you have germs, then take medicine," my daughter responded, quite reasonably.

"That is a good thought. Mommy does take medicine, though. Don't you see me take it every day and at night? Sometimes, the medicine isn't enough to take care of all the bad germs, so mommy needs more rest and quiet for her body to fight them itself. Then, when I get enough rest, I can play some more with you. You just have to be patient. Mommy will always come back to you when I can."

That seemed to placate her a bit. So, she sat and watched her show and rubbed my hair, while I rested.

It is pretty hard because, I know if I wasn't sick I would be such a fun mom. I am childish and love to play. If I had energy, we would be going somewhere new everyday and going on adventures all the time. As it is, that isn't possible. Instead, I have to ask my children to mature quickly and make the sad realization early that there are healthy people in this world, people they can treat normally and be normal kids around, and people who are ill, that they have to treat carefully and be quiet around. I hate that! It's completely unreasonable for me to expect that from them! I don't want to be the depressing person in their lives...I want to be a spot of sunshine and comfort.

My eight-year-old had a harder time handling my illness and its downward progression, I think. My youngest has only ever had "sick mommy". She never experienced me any other way. My oldest, however, remembers a time when I was working, taking her on mommy/daughter dates, and going on errands almost every day with her. She remembers the "mommy before". Sometimes she cries and asks:

"Mommy, why can't you be like you used to be?"

What do I say to that? I mean, I ask myself that all the time! How do I tell her about reality, without breaking her optimistic view of the world that every child should have?

Her New Years resolution this year? She wrote it on a paper balloon for a class project. "I resolve to be more helpful to my mom who can't do much because of her illness." She think about me and worries even at school!

My every day is a constant balance of protecting myself and doing what I need to do to try and keep myself from getting worse and being there for my children. Do I be selfish to be able to possibly heal or do I spend time with my children and prolong my periods of crashes?

I want to be so much more. I know that it isn't possible. My kids are my world. I am so lucky to have them with me. I will continue to try to be the best I can be for them! The one thing I can say is that I will never regret having them, ever! I would take my disease becoming a million times worse if it means my kids are happy! Being a mother with this illness is hard! That is my point, I think! Lol! Thanks for listening (or rather, reading) to me rant!
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mirespada

About the Author

I am a 29 year old mother of two beautiful girls. I have had ME/CFS for 8 years. Before I got sick, I was an archaeologist for the Forest Service (the youngest professional archaeologist in the Southwest!). I now live with my very supportive family: my mom, my dad, my sister, her boyfriend, my S.O., my two girls, my two dogs, my cat, and 4 fish.
  1. M Paine
    Thanks for posting this. I'm a new dad, and this breaks my heart. I know the struggle of grieving for what you want to be, but I can tell that you also have a similar determination to be the best that you can be under the constraints you are forced to live under. Best of luck to you and your family. Your daughter will appreciate all you have done for her, and how difficult it truely was.
  2. Wolfcub
    I am so sorry. Reading this my heart was moved.
    What you said to your little girl was better than I would have thought of saying. You said it so she can understand. Bless her. She loves you and worries about you.
    The world is NOT a perfect place. I disagree with the idea that children should be coccooned from the way the world really is. Within reason they should grow up knowing that life is not all butterflies and roses, and how to cope when it is not. How to understand, to have compassion, to balance things, to live and love anyway....
    It took me going on 50 years to learn those skills.
    There are many ways to show love even when you are so sick and in your bed. Cuddles and "mother and daughter" chats are one way.
    I think it was the trip which floored you. And hopefully in a few days (?) your strength will return a little bit yet.
    Nothing can really eclipse the love you have between you and your kids. Blessings xx
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