30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW & didn’t know you wanted to know

I’m so grateful to Carolyn Thomas, My Heart Sisters for bringing Invisible Chronic Illness Awareness Week to my attention.   Carolyn suffered a Widow-Maker Heart Attack in 2009 and has Inoperable Coronary Microvascular Disease.

Carolyn’s post on her “30 things”  is wonderful, honest, informative and well written.  

Please read it to get another perspective on invisible illness. 

Carolyn’s intro is perfect so I’m stealing it!  (Don’t tell Carolyn! . . . ).  Here it is:

“Next week is Invisible Chronic Illness Awareness Week and this year, the 2012 campaign organizers have provided a 30 Things template for bloggers like me. Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness which may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into next week and beyond, here goes:”

Divinity worn

My choice: A gossamer gown

or a horse hair robe

3 Heads are Better than 2, by Judy

 

1. The illness I live with is: fibromyalgia and chronic heart arrhythmias. Yup plural.  The meds I am on for atrial fib caused another problem with my AV node which caused a problem with my pacemaker which caused .. . 

2. I was diagnosed with it in the year: Fibro – 1996, Heart – 2000ish

3. But I had symptoms since: Looking back I had fibro symptoms as a child.  My heart arrhythmia’s started in the 1970’s.  I believe my heart problems are fibro related as fibromyalgia is a central nervous system disorder.

4. The biggest adjustment I’ve had to make is: remembering that my body is no longer 30 years old and not be upset with myself for not doing MORE, more, more.

5. Most people assume: I’m fine.  When I’m in public I look fine, I act fine. And that’s fine with me.

6. The hardest part about mornings are:  Waking up exhausted and wanting/needing to go back to bed even if I’ve slept 9 hours.

7. My favorite medical TV show is:  I don’t watch medical TV shows or anything that has death, dying, famine, pestilence, flood, suspense or mayhem.  My central nervous system is always on red-alert and anything that is even a tiny bit tense throws it waaaaaaaaay over the top.  I watch a lot of HGTV!

8. A gadget I couldn’t live without is:  Romba.  I could watch her vacuum her little robot wheels off for hours!  If I could afford it I would have a robot clean counters, wash windows and COOK.  The best money I ever spent that I thought I shouldn’t spend.  (I did have a 20% off coupon . . .)

9. The hardest part about nights are: Hoping tomorrow I’ll have energy but knowing I will wake up exhausted.

10. Each day I take __ pills,  8 or 9 but who’s counting . . . two are for fibro the rest are heart meds.

11. Regarding alternative treatments I: have tried most with no change.  I don’t do placebo very well either.

12. If I had to choose between an invisible illness or visible I would choose: NEITHER!  I do think that in many ways visible illness or injury is looked at as legitimate and invisible illness or injury is suspicious – particularly when it’s chronic.   Once I was on crutches for leg surgery. I got so much care and sympathy that I told everyone I was going to keep the crutches and use them when I had fibromyalgia flare ups.

13. Regarding working and career:  I have had to limit the number of people I see on a daily basis.  This past year I’ve had to limit the number of days in the office.  If I see too many people it takes me days to get any energy back.  The older I get the less resilient I seem to be.

14. People would be surprised to know:  At home I sit and stare a lot. I’m not always cheery and energetic.  When I’m at work I truly am delighted to see clients and I am able to keep my focus for and on them and push everything else into the background.  When I notice pain, fatigue  or irregular heart beats during a session then I know I’m not doing well at all.

15. The hardest thing to accept about my new reality has been:  Not having the kind of energy I used to have, want to have and how unproductive I feel.  The hardest thing to DO is pace myself.  When I’m feeling ok I tend to do too much and then  I create a “fibro flare”.

16. Something I never thought I could do with my illness that I did was: Teach 4 day intensive for the Academy for Guided Imagery.  The teaching is from  9 am to 5 pm and then the faculty debrief etc until 6.  I take a nap during lunch.  The incredibly wonderful students that take the training keep me enthused and stimulated.  After the 4 days I crash for days.  It’s worth it.  I love teaching.

17. The commercials about my illness:  I’m glad that the words Fibromyalgia and Atrial Fibrillation are becoming known.  But all the commercials about medication in general drive me nuttier than I already am.  They make it sound like all you do is take a pill and the world is wonderful.  (The list of side effects makes me smile – I’ve had most of them)

18. Something I really miss doing since I was diagnosed is:  Spontaneity.  I never know how I’m going to feel.

19. It was really hard to have to give up:  My previous way of living.  After all these many years I still have a difficult time pacing myself.

20. A new hobby I have taken up since my diagnosis is:  Taking naps.

21. If I could have one day of feeling normal again I would:  I’ve come to realize that what I’m feeling and how I’m living IS my new normal.  I can no longer remember how I felt before my fibro and heart problems really flared.

22. My illness has taught me:  We all share invisible hurts, scars, pains and sorrows.  Invisible emotional hurts and pains are much more difficult than the physical.  In a weird way I am blessed.

23. Want to know a secret? One thing people say that gets under my skin is:  Give me advice on what I can do, should try to be “cured” or feel better.  After 16 years I’ve read books, articles, blogs, research and have pretty much tried everything known to man (at this point in time).   I’m sick and tired of trying “miracle” cures and going to health care appointments.  I’ve tried acupuncture, herbs, vitamins, yoga, body work, imagery, hypnosis, been to over 30 different kinds of doctors etc.  Enough!   The only thing I haven’t tried is being stung by a bee 3 times a day.  Ouch! (I saw a woman at a fibro conference gave a demonstration)  Thank goodness I’m allergic to bee stings . . . or I would have tried that . . .

24. But I love it when people:  Forgive me for not calling back, forgetting their birthdays, understanding how difficult it is for me to make long-term commitments or plans since I never know how I will feel.

25. My favorite motto, scripture, quote that gets me through tough times is: ” This too shall pass”.  My Mother always said that.  She was right.  Everything passes.  This life is just a small blip in eternity.

26. When someone is diagnosed I’d like to tell them:  Your life won’t stop even if your health has. Do what you can when you can, if you can.

27. Something that has surprised me about living with an illness is:  How exhausting and isolating it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: To be honest, I can’t think of anything.  People do nice things for me all the time that have nothing to do with how I feel.  Nice!

29. I’m involved with Invisible Illness Week because:  I believe that it is the only way to make invisible illness VISIBLE is to share and talk about it.

30. The fact that you read this list makes me feel:  Hopeful. Maybe my experiences can help others not feel as puny & crazy as I thought I was when I first developed debilitating symptoms.

Thanks Carolyn!  At least I didn’t steal your answers too!