amber rahim

Chronic illness: the parts we don't talk about

What’s different about chronic illness No.5: always sicker

9 Comments

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

holding-hands-mother-and-child2

p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 

9 thoughts on “What’s different about chronic illness No.5: always sicker

  1. Hope F is feeling better now? she is one tough cookie….

  2. That is so tough. Give her an extra hug from me. Reminder her how great she was at our party. Glad she did not scar her beautiful face, not scratching took real discipline. She has that in spades. She will go far!

    • Thanks L! She was great at your party wasn’t she? She is going to really miss being at Burns night but it’s just too late for her. Will have to plan something else for her, she loves coming to visit you.

  3. F sounds just like Ethan. E gets sick very easy and all the time. Ethan has type 2 neonatal Bartter syndrome. Love you stories and tell F, she is always in ours prayers.

    • F has antenatal Bartters for sure but they weren’t able to confirm type in the genetic testing. Does he need tons of fluid too? I think Fs biggest problem is dehydration and sodium, her K is pretty stable.
      I heard about Ethans speech to raise awareness. I think he is a fantastic boy with real guts. I will pass on your kind words to F.

    • Yes. Ethan has neonatal as well and his genetic test has been done in December 22, since it’s cost a lot in US. So we will know for sure what type of Bartter he is dealing with. Ethan was born premature and it has began before birth, so it’s probably type 1-2, the most severe form. Thank God it’s not type 4, I am so heart broken for this families. Love you all Bartter and Gitelman people out there. I know what your life feels like. Yes, Ethan drinks tons of fluids as well, using bathroom every 30-40 min!!! Medicine not working well on him, it seems like his body get used to it and asking for more K and Choride. How much more little child’s stomach can handle?? He is having a major stomach issues as well. His K levels 3. for the past year and he weights 66 pounds at age 11.
      Send our love to your girls.

  4. You already did the best thing. You acknowledge it. You know it and understand it and that will count for a lot. There is nothing to say really because it just is what it is. Just being real and present and not trying to dress it up or pretend it’s otherwise is a valuable gift to someone in that position.

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