amber rahim

Chronic illness: the parts we don't talk about


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Rock and a hard place: Back to a PEG?

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

so, what to do?

Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).

I think it’s time for some Dr Seuss

WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET

YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET


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

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.

 


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Oh, so that’s what I did last year. #fireworks #WordPressDotCom. My 2014 annual report.

I always think I’m not writing enough and then I got this from wordpress. ┬áIt’s good to look back at what you have achieved. not just forward to what still needs to be done.

So actually, thanks wordpress. This is one compilation of 2014 that I actually like.

See the #fireworks I created by blogging on #WordPressDotCom. My 2014 annual report..