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:”

Haiku-Heights

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!

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

  1. Thanks for sharing!
    I know what you mean about keeping the crutches. When I fractured my wrist in July 2009 and had my arm in a cast, more doors were held open, more things lifted on and off public transit, more things on high shelves reached for, etc. Visible health issues are “believable,” and to many, invisible ones aren’t. Too bad seeing is believing. Unaware people seem to think I’ll see it when I believe it!
    I love your honesty and your words of wisdom!

    Like

  2. Oh, how divine and strong you are..Judy and it is so nice to know you a little more…you rock and you are so much more alive than so many people who just pull themselves down just because the nose starts blowing.. I am happy to be blessed with your wisdom…

    RS:)

    Like

  3. Excellent…thank you. My invisible illness is pain from arthritis.

    A young lady about 20 with MS told me that her MS was a blessing, for she would
    take care of physical problems with regular visits to the medical office and would not let things slide til it was too late…an interesting way to look at long term illness…visible or invisible.

    I admire your frankness and sharing.
    Peace,
    Siggi in Downeast Maine

    Like

    1. Sig,
      I think that we often dismiss arthritis as a “inconvenience”. It’s so much more than that – people having to accommodate in almost every aspect of daily life.

      I do understand the young lady with MS saying it was a blessing. I have posted about this and it’s true. Any hardship can help us focus on what is really important and help us learn that we have strengths and abilities we didn’t know we had. For me it has helped me detach from my body and know that I am my soul.

      Like

  4. Oh Judy this resonates with me to a “T” … having an invisible and chronic illness is quite a journey, many do not understand unless they can relate to it from personal experience. I appreciate your honesty and courage to tackle the 30 items all at once — seems like a daunting task. I will ponder on whether I will climb out on the limb of Invisible Chronic Awareness Week. Thank you for sharing. Blessings and Namaste ~~ becca

    Like

    1. Becca,
      In many ways we all have something of pain or discomfort that is invisible. It’s just a matter of degree as how the “symptoms” manifest! I do believe the test is whether we can transcend the symptoms with love or descend into them. Sometimes I am able to transcend and sometimes I descend. The ladder gets steeper the older I get . . .

      Like

      1. I generally do not refer to my invisible disease — because I’ve worked hard at maintaining the positive aspect and the lessons to learn from it … At least I am still alive today with only 5% chance of survival. Yet, if I could have a “do over” I’d rather be without it. 😀 Blessed Wednesday!! Nuzzle and treat for Max!

        Like

  5. Coming here to read your fine haiku, I had no idea I would be reading about you and this sickness as well. Your words have tocuhed me so much. In my country I dare say that little is known of FM at least among the public. I haven’t heard of it before unitl today. Thank you for sharing an intimate part of your life and making us understand what a day in your life entails. Wishing you all the best.

    Like

    1. Celestine,
      Thank you for taking the time to write such a lovely comment.

      Fibromyalgia is actually very wide-spread in the entire world. Most of the time women and men are looked at as complainers or malingerers or have arthritis. It is a central nervous system disorder so tests do not reveal any abnormalities.

      It’s only about 10 years here in the USA where it’s been recognized as a REAL disorder!

      Like

  6. Hi Judith,
    I came across this today and felt encouraged to keep on going (today). I am a psychotherapist who lives with invisible illness. As a matter of fact, I would like to start a group for those like me (us). I was lucky enough to experience a short burst of incredible energy at 40-years-old. I learned to wind surf and I mountain biked all over the Central Coast of California. Then I broke my neck, developed chronic pain and muscle spasms, got a brain tumor, and went against advice to “go home and live another year.” I had it out in 2006. Now I suffer chronic pain, exhaustion, etc. You described it exactly as I experience…good days and bad days. I never know when (it can happen in the middle of walking across the Home Depot) so I have to pace myself, which is hard for me to do. I have lots of mental energy! Thanks for writing this! It speaks to many. Below is my website for my memoir blog. My professional website is under construction.

    Like

    1. Linda,

      I canNOT begin to imagine what you have gone through with a broken neck, brain tumor and sent home to die in a year.

      I had a creative expression 8-week group last year. It was a wonderful experience. The biggest difficulty with those groups is that people don’t often feel well enough to attend or make the commitment. I found that time limited groups were best for them AND ME.
      Please resend your website link as it didn’t print out.

      I would be pleased to share any information/experience I’ve had.

      Like

  7. You know I came for your haiku, which spoke volumes about how we choose to live with a reality we face. I really liked it. But your honesty about your hidden illness(es) stole the show. I’m all for bringing something like this into the light of day so that it may help others who may face it. I am going to look into the campaign you mentioned. I may write my own list of 30 things on my non-fiction blog. Thank you for bringing it to my attention.

    Like

      1. Judy (you seem more like a Judy to me), I tried to send an e-mail response to your comment on my “Devine” post, but it bounced back. I said: The trick is to savor the fantasy and forget the reality. It’s so much less fattening and the beauty is that you can have all you want! — Thank you again for posting your “30 things.” You’ve gotten me thinking. I’m sending you good thoughts for a feel-good day tomorrow!

        Like

        1. Patti,
          Thank you for the link.

          Everyone: take a look at Patti’s link and read about diabetes – one of the biggest health problems – and not only is it invisible, it is SILENT until it’s too late.

          Like

  8. This is all very interesting to say the least. Thank you for sharing. Through all of your answers I’m feel sure you have chosen “A gossamer gown”

    Like

  9. Thanks for sharing the list as it refreshed the knowledge that my Benign (hate that word!) Exertion Headaches and aging aches and pains are invisible to an uncaring world with it’s own unseen issues that are (mostly) worse than mine. Beiong grateful for walking the dogs, seeing a hawk wheeling in a blue sky, the taste of a fresh melon, an earned “thanks” from a client – do make every moment and day special.

    Like

  10. Beautifully put, Judy/Judith. I’m so glad you took my advice and decided to undertake this exercise. When I was writing my post for Invisible Illness Week, it struck me that most questions were ones we rarely if ever stop and think about. PS. Thanks for the nice plug! 🙂

    Like

    1. PS – At the risk of violating #23, I wonder if you and your readers have discovered Dr. Barbara Keddy’s book “Women and Fibromyalgia”? She’s a university prof in Halifax who’s lived with FM for 40+ years. I now read her wonderful blog faithfully – not because I share the same diagnosis (I don’t) but because A. she’s a beautiful writer, and B. much of what she writes is SO applicable, in my opinion, to what heart patients live with, too. Your comments about watching TV (#7) reminded me immediately of her piece on the “highly sensitive” person: womenandfibromyalgia.com/2011/01/01/fibromyalgia-and-highly-sensitive-persons-e-g-orchid-children/

      Like

  11. It’s amazing…. I don’t know what Carolyn’s answers were but after seeing yours….I don’t know how original my answers would be. I’m going to do this too. I have a sneaky suspicion we are all alike!

    Like

Wadda ya say? Comments HERE! (Depending on energy, I may not be able to respond to every comment but I READ every word of every comment!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s