Chronic Lyme Disease Summit 2

30 Things About My Invisible Illness You May Not Know

As part of Invisible Illness Awareness Week (this week!), I'm participating in the "30 Things You May Not Know About My Invisible Illness" meme blog hop.  So, here we go!


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, chronic fatigue, migraines & arthritis
2. I was diagnosed with it in the year: 2012 (fibro/fatigue) 2014 (arthritis) [Migraines years ago.]
3. But I had symptoms since: 1970
4. The biggest adjustment I’ve had to make is: Activity intolerance.  The slightest activity puts me into a "flare" and makes me completely exhausted.
5. Most people assume:  I am perfectly fine and healthy.
6. The hardest part about mornings are: Utter exhaustion.
7. My favorite medical TV show is: Grey's Anatomy!
8. A gadget I couldn’t live without is:  A camera.
9. The hardest part about nights are:  Insomnia with "racing thoughts".  Please make it stop!
10. Each day I take as few pills & vitamins as possible. (No comments, please).
11. Regarding alternative treatments I:  have tried many.  Basically, the only treatment that really works, for me, is time and activity management.
12. If I had to choose between an invisible illness or visible I would choose:  Visible, for sure!  Nobody understands that you have an invisible illness.  "You look fine".
13. Regarding working and career:  I'm grateful for my job, it has created wonderful opportunities for me.  That being said, the last 10 years have been a tremendous challenge trying to make it through a work day in constant pain, and half asleep.
14. People would be surprised to know:  That I the chronic ailments I have are not life-threatening, they are "quality of life threatening".  I can still DO all the things everyone else can do.  I just pay the price afterwards.  Rather than refrain from doing things, I still do everything and have learned to build in recovery time.  I'm not going to let this ruin my life.
15. The hardest thing to accept about my new reality has been:  It's not a new reality.  I've been living with chronic pain since I was 10 years old, so, it's nothing "new" to me.  I can't answer this question lol.
16. Something I never thought I could do with my illness that I did was:  Work full-time, manage a household, supervise a bunch of employees, and raise a multitude of dogs and cats!
17. The commercials about my illness:  Make me INSANE!  If I see that skinny, brown-haired woman rubbing her shoulders ONE. MORE. TIME.  I am going to lose it! Fibromyalgia isn't (just) pain around the neck and shoulders!  Come on, people!
18. Something I really miss doing since I was diagnosed is:  Going to concerts or other events without having to plan a day of rest before and after.
19. It was really hard to have to give up:  Long, long walks with my dog(s).
20. A new hobby I have taken up since my diagnosis is:  Writing and blogging, of course!
21. If I could have one day of feeling normal again I would:  Go for a really long hike or a road trip with my dogs.
22. My illness has taught me:  Compassion for others.  If someone is driving too slow, or having trouble at the grocery check-out... keep in mind that they could be living with an invisible illness, or could be caring for a loved one with an invisible illness.  Everyone out there has their "stuff".  Be compassionate!
23. Want to know a secret? One thing people say that gets under my skin is:  "I would never know it by looking at you."  Well, duh, that's because I TRY (really hard) to look good and presentable!
24. But I love it when people: Understand that fibromyalgia is a widespread, chronic pain that has lasted for 3 months or more (continuously without relief), accompanied by crushing, indescribable fatigue like you have never experienced before in your life.
25. My favorite motto, scripture, quote that gets me through tough times is:  The Serenity Prayer.  Although, I'm not very SERENE!
26. When someone is diagnosed I’d like to tell them:  Take baby steps.  Do everything in moderation.  Try not to rely on prescription drugs right away.  Manage your time.  Take rest periods in between ALL activities, no matter how small.  Even taking a shower can exhaust you.  Make time to sit or lie down after your shower.  I could go on and on.
27. Something that has surprised me about living with an illness is:  Some people don't give a sh*t.  They still expect you to be exactly like you always were.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Let me sleep.
29. I’m involved with Invisible Illness Week because:  It's important for people who have an invisible illness to know they are not alone, and there is support out there.  It's equally important to spread the word that invisible illness exists, so people who are NOT dealing with this (either as patient or caregiver) are aware that it exists.  Some day, it could happen to you.
30. The fact that you read this list makes me feel:  Empowered!!



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