I had intended to write several blogs that will cover some key points for preparing for what could happen when you live with a chronic illness. I’ve delayed that because I’m hoping to hear your ideas on this that I will in corporate in my posts. So please share your thoughts and comment here or email me.
Instead I’m writing about my own on-g0ing experience with a chronic condition: rinitis due to allergies (we think) and the “cure” or path to improvement (surgery).
A few weeks ago I blogged about sinus surgery to improve rinitis. (Several of you have emailed me inquiring how I feel. Thank you … but please submit comments online so others can share you thoughts!)
Generally I’ve felt worse post surgery that was 4 weeks ago. This was unexpected and caught me unprepared.
What has happened during recovery that make this so difficult? I was supposed to “naturally” shed the scabbing that occurs from breaking nasal passages. But it hasn’t gone as planned and pressure has built 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 now irrigate twice daily with a saline solution and it could be helping. The past two days have been relatively pain free days. But I’ve seen improvement reverse itself and 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 since my diseases have been cured (through surgery) or are in remission (due to medication). If it’s a bad day, the pain that dulls my thinking and I”m tired. I keep it to the minimum – client work and simple meal prep. .
The silver lining is that this experience has given me some many meaty topics to write about.
I’ll share what I’ve learned (or knew but benefited from a personal experience reminder:
I’m fortunate that my nature is not to wallow in self pity. I have an innate drive to push through difficulties and I ‘m naturally an optimist living in a place called hopeful.
I don’t like talking about this with friends and family because once said, there’s not much else to say. I also find many people have advice that I don’t ask for.
If I had a job where I saw co-workers, I’d have to be prepared for talking about this, like it or not.
Trusting my doctor to do the best he can (and it is a “he” ) makes it easier for me to weather this. But always consider going elsewhere for new ideas when what we’re doing doesn’t work and this doctor has nothing else to offer.
Doctor’s offices are not on worker friendly schedules. I would have had to prepare for time off for follow up visits if I had a supervisor looking at my time or colleagues who rely on me.
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).
I work when I’m in pain and fatigue so I can push myself with the same energy to get the exercise I need and see people whom I care about. That’s integral to staying in balance.
I’m lucky to be able to set my own schedule and work from home. A boss and an office I have to go to daily would be much more difficult. But here’s the downside: being self employed and working on a fee for service basis means that if I don’ t work, I don’t get paid.
I could see how a supervisor might resent this since I’ve had two elective surgeries in one year from which I didn’t recover as expected and it took longer to get to normal. It would have been wise to have prepared more for the unexpected.
The best people to commiserate with is another person who has experienced a chronic illness.
Do you have anything to add to this list?
What about this: what do you do to prepare for what could happen when you live with a chronic illness?