Tuesday, June 3, 2014

My year of less is more: not quite the halfway mark I had in mind!

A precious moment of 'uprightness', a smile and outdoors

Well, this is not at all what I had in mind when I started this year off in January! That's the problem with making bold declarations in public forums.  You can't even pretend it's what you had in mind!

Not of course that having a chronically sick child is on anyone's radar.  It kind of just happens.  And there you are.  That family with the sickness.  Just an ordinary family.  Not doing anything particularly hopeless or anything particularly amazing.  And now increasingly desperate for answers, yet the answers seem so elusive. More elusive as time passes.  Elusive because your brain can't kind of keep track of all the different symptoms and ailments and appointments and tests.  It becomes more about what today's been like.  Or what the last doctor's appointment raised.  Over time it's hard to hold onto it all.

Things haven't been going very well.  She's been off school for the past six weeks after attending a few days at the start of term and then picking up a virus.  She just keeps picking up little viruses (don't ask me what or when or how.  Remember my brain is not keeping up!).  She's been ok in herself mentally, but is really just not very well. Wakes at 10, looks terrible and is often back in bed at 8 at night.  Last week I read a helpful article about living with chronic illness and it helped me appreciate more deeply how crippling this type of fatigue is. It took her three days to get psyched for a shower last week.  I'm not exaggerating. And then she had to lie down for three hours to recover once she'd managed to have one.

How are we coping? Well, I've been coping by staying busy doing things that I find refreshing.  I haven't written much here because I was finishing off a uni assignment and writing an article for a magazine.  I've also taken on teaching a new subject at school for a term - I'm appreciating the challenge and the distraction.  I understand why people with kids with chronic illness like to get out and work.  They aren't being slack.  It's actually helped me stay sane getting out of the house and being in an environment that gets me thinking about other issues.  For me, taking on tasks that have concrete outcomes has been enormously valuable.

I'm not sure what impact this is having on the other kids.  One of the advantages of a big family in this situation is that it is a bit of a juggernaut.  It just keeps on moving forward.  The other kids have all their stuff going on for them and it forces us to keep going.  The other advantage is that they bring the world home for our daughter each day.  She told me that her favourite time of the day is the evening when everyone is home.  They chat to her and we have lots of laughs around the dinner table. Once again I am so thankful for those goals I set myself at the start of the year to eat more meals together by changing the schedule.  I just had no idea that almost 6 months later it would be so important for a sick child.

We're still pursuing treatment/management options. It is slow.  And we have to be very selective. Dragging a child in this state of health off for endless tests and appointments is horrible.

I am sorry if this is boring reading for you faithful blog readers.  I feel a bit *yawn* about it myself.  Like I've run out of the sadnesses.  But I kind of want to write about it for myself (to look back) and sometimes, just hearing how others travel this path can be interesting - even if you are unlikely to ever end up in the same situation.  Thanks for listening!

NB:  You can read more about what's been going on with our daughter's health here and here.  

3 comments:

Emily said...

There are people listening Jenny. I'm sorry life is so tough. Hang in there. Emily.

Samantha said...

I follow your blog, and am praying for you all.

Sarah said...

It's not boring at all, it's your life and we are privileged to be invited in through your blog (I felt I was boring people with my endless posts about PND). Praying for you, your daughter and the rest of the family, that God will continue to uphold you and surround you with loving and helpful friends and medical professionals.