Skunkwworks 11: There are days

Skunkwworks

I’ve been ill the last 10 days, and it wasn’t funny.

Being ill (with ‘common’ ailments, as people usually call them) has never been funny. And it’s not because I’m pessimistic, weak-minded, or want everybody’s attention or something.

It’s just that when you have an auto-immune condition, things do get blown out of proportion, much as you wish they wouldn’t.

One December, 10 years ago, after a work trip to Vietnam, more than half the delegation came back with flu. I was knocked out in hospital with pneumonia, 40 deg fever, 2-week coma. Intravenous steroids then had to go up to 100+mg, and it took close to 2 years to get slightly close to saying my condition might be stabilising.

Another year, stomach flu was making its rounds. Eventually caught it, and back to the hospital we went, intravenous hi-dose steroids et al.

And there are other episodes I wish I didn’t have to remember. But I do, and in as meticulous detail as I can manage in well-kept records – because they are all data points that provide clues to what Lupus looks like in my specific case. They don’t call it the disease of a thousand faces for nothing. In any case, I’ve always believed that I must play an active & informed role in managing my condition –  because I am the one who spends the most time with me.

This time, I felt hints of familiar pains in the chest area. Previous flares involving accumulation of fluids in my lung membranes came back to mind.

But it was primarily, and stayed primarily, a very bad cough with near-total loss of voice. I checked almost religiously – no fever. Always a good sign. Diligently examined joints & connective tissue – no swelling, no pain. Ankles – no swelling. Also good signs.

Surely it won’t be a flare.

But I was frustrated that the 1st round of GP’s meds were not working as well as they should. Went to the GP a 2nd time. Halfway through this 2nd round, things weren’t looking as good as they should be. Really frustrated. Thought-creep:

Could it be that the last round of steroids increase was an over-correction? Compromised immunity instead…

Great. I need to be in Lupus Clinic next week. Results are not going to be pretty. Prob going to get scolded. Again. …

So. I suppose switching drug therapy at next visit is a non-starter? Maybe we should wait till next year? But I know they want me to switch. They’ve been persuading me since March. I only wish the medical opinions on the therapies aren’t so polarised; it’s quite confusing, standing where I am… 

Some people are going to tell me it’s because I’ve been working too hard. Sigh. Frankly, a lot of such comments come from well-meaning folks who (honestly) haven’t travelled the journey of the last 2 years closely with me. If there’s any major step I’ve taken in the last 2 years, it is to work less hard, get more balance, and fight towards becoming well. The current life season I’m in is one fine example. Anyway. There is no pleasing everybody. There will always be someone who says I’ve been working too hard. 

And even with the steps I take, there’s still no guarantee. I’ll still fall sick from time to time.  

And a certain sadness.

Because I’d planned to take December as a break. Relax, and savour – like what so many people tell me.

December, so far, has been a big battle.

It makes me sad, because I realise again that it takes so much effort, so much planning, so much praying + hoping… just to have a ‘normal’ day, a ‘normal’ week, a ‘normal’ month. The kind of ‘normal’ that healthy people take for granted so often.

[Some of my healthy friends do things to themselves that I wish they wouldn’t, but over time, I’ve stopped telling them so. I’ve concluded that they may never fully understand my objections – unless and until they fall out of good health. But I don’t wish that on them. Ever.]

Today is the last day of the 2nd round of meds, and I’m better than at the start of the week. Still tired, still sniffly. But thankful that there is visible progress.

*

Practically speaking, being ill in this new life season carries more weight than it used to also because it directly impacts my ability to do work.

One characteristic of this current season is: no work = no income. I was fully aware of it when I made my decision earlier this year, so it’s not a shocking revelation only now. But it is a real risk, and a big one…

There are days.

Continue walking. Make notes of the season’s colours and tunes. Pick up its lessons. Pray and hold fast.

Hit a Wall doesn't mean nothing on other side

 

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About lilac butterfly

Live. Love. Learn. Laugh. Write. Draw. Colour. Blend. Play. Dream. Cry. Reflect. Pray. Sing. Worship. Bake. Cook. Rest. Give thanks.

3 comments

  1. Carol

    Praying that He will always be by your side.
    Get well PRONTO!!

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