A few weeks ago I blogged about my own sinus surgery to improve rinitis .

I’ve felt worse post  surgery than before – and it’s been 4 weeks.  This was not expected and caught me unprepared.

What happened?  I was supposed to “naturally” shed the scabbing that occurs from breaking nasal passages.   But it  hasn’t gone as planned.  Scabbing and swelling persist.  Pressure builds in my head due (we think) to the blocking scabs.  My ENT surgeon literally pulled a huge scab from my nose with a tweezer-like instrument (OUCH!).  The relief was temporary.

I also think I’m developing a pain syndrome there – which has happened before. My nervous system tends to over react (multiple sclerosis will do that!)

Twice daily  “irrigation” (what a word!)  gave me two days relatively pain free days.  But I’ve seen improvement reverse itself.  I’m not counting on it yet.

This experience has pulled me back into the chronically ill world  — which I haven’t personally felt part of for the last few years.   My diseases have either been cured (through surgery) or are in remission (due to medication).

Now, on a bad day,  the pain  dulls my thinking and I”m tired.  Life is kept to the minimum —  client work and simple meal prep.

Hey, but here’s a  silver lining. This gives me some more meaty topics to write about.

This is what I’ve learned:

1. I’m lucky.   I have an innate drive to push through difficulties and I’m naturally an optimist,  living in a place called hopeful.
2. I don’t like talking about CI with friends and family. Once said, where do you go?  Most people think there’s got to be a solution, giving advice I don’t ask for.  Working solo makes this easier.
3. Trusting my doctor to do the best he can makes it easier to get through trial and error.  But I have to stay open to looking elsewhere when this doctor has nothing else to offer.
4. Doctor’s offices are not on worker friendly schedules.  If I had a supervisor looking at my time or colleagues who rely on me, I’d have had to arrange for time off for surgery and unexpected  post op visits.
5. Feeling tired and in pain is a drain on me but just as much on my husband.  He needs my empathy but not my guilt.
6. I work when I’m in pain and fatigue so I can push myself  to exercise  and see people whom I care about.  That helps me stay in balance.
7. Setting my own schedule and working from home makes this easier.   But there’s the downside:  being self employed and working fee for service means no work,  no pay.
8. I could imagine how a supervisor might resent my situation — two elective surgeries in one year. I didn’t recover from either as quickly expected.
9. The best people to commiserate with is another person who has experienced a chronic illness.

What would you add to this list?

How do you prepare for the unexpected when you live with a chronic illness?