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What do you learn from chronic illness or pain?

February 3, 2009 by Rosalind Joffe 5 Comments

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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?

Filed Under: BOOK - Women Work and Autoimmune Disease, Career Development, Musings on LIfe with Chronic Illness, Working for others, Working with chronic illness

About Rosalind Joffe

Comments

  1. Sandra says

    February 4, 2009 at 11:35 am

    I would really like to see more profiles with people who own their own businesses like you. I am so demanding on myself, that when I am sick or in pain, I feel guilty about not going to work. I would rather not apologize for not being able to come to work and work when I can because I know I am not a slacker.

    More business owners please!

  2. Rosalind Joffe aka cicoach.com says

    February 4, 2009 at 11:48 am

    I know you’re right about that, Sandra. I’ll write on it — and hopefully we’ll get others to weigh in, too. But as for working for yourself or for someone else — if you’re feeling guilty about your choice, that’s you and not your supervisor. You’ can do that to yourself with or without someone else to think you’re a slacker.

  3. Sherry says

    February 4, 2009 at 5:20 pm

    Hi Sandra and Rosalind,
    I also depend of myself for support with a coaching business. I have MS and have been treated this last year for additional medical conditions requiring difficult and life changes surgeries. The most important realization for me was I wanted to live. I could have died during the surgery and had only days between when I was told my condition and when I would have the surgery. Knowing what I wanted and feeling that in my mind and body shifted how I responded to what was happening. I have experienced being focused on the current day and doing what I what to do and do well as an simple and more complete way for me to accomplish my goals. When I don’t stay present and focused on what I want to do and can do well and while taking care of myself I get very little I want done and feel worse. My business and my health then suffer and I have self doubts. Everyone needs support and in business that is also true. Learning what you can hire someone else to do for you and how you can work with other business owners to share that expense can give you more time. This can happen in many different ways now because of the ability to work from home and from the computer and services that can be shared over the web. Being honest with myself about what I want and what I like doing has helped me focus on how to support myself and find the additional support I need when I need it.

  4. Rosalind Joffe aka cicoach.com says

    February 4, 2009 at 5:34 pm

    Good hearing from you and thank you for sharing that, Sherry. I send you my wishes for your health!

Trackbacks

  1. Self employment, Virtual employment and Being the boss when you live with chronic illness says:
    February 5, 2009 at 10:23 pm

    […] reader asked me to write about this: I would really like to see more profiles with people who own their own business like […]

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Rosalind Joffe

rosalind@cicoach.com

617.969.1930
How can I help you?
I specialize in working with professionals living with chronic health conditions who want to continue to thrive, not just survive. Learn more by clicking here.
Women, Work and
Autoimmune Disease: Keep Working Girlfriend!

by Rosalind Joffe
with Joan Friedlander
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