Saturday, August 29, 2009

30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow

keymi oeil place gaillard tramwayImage by coincoyote via Flickr


1. The illnesses I live with are: leukemia (cancer) survivor (1988), Hepatitis C (1988), Type 2 diabetes (1999), chronic myofascial pain (2004), mild to moderate degenerative changes in my neck (2004) and low back (2005), fibromyalgia (2005), dysautonomia (2007), chronic fatigue syndrome (2008), thoracic outlet syndrome (2009).
2. I was diagnosed with them in the year:
see above.
3. But I had symptoms since:
Leukemia: probably about 3 months before I was diagnosed. Diabetes: probably a year or so before diagnosis. Dysautonomia: for at least ten years before I was diagnosed. Everything since 2004: started in October 2004.
4. The biggest adjustment I’ve had to make is:
to learn how to live my best life despite chronic illnesses.
5. Most people assume:
that since I am disabled and spend most of my time at home, I am living a life of leisure. NOT!
6. The hardest part about mornings are:
trying to wake up when I feel like I never actually fell asleep.
7. My favorite medical TV show is:
House.
8. A gadget (or two) I couldn’t live without:
my shower seat and my scooter.
9. The hardest part about nights are:
not being able to fall asleep until early in the morning.
10. Each day I take
2 pills, 2 injections, 1 liquid medication and & 5 vitamins.
11. Regarding alternative treatments I:
have tried many, often paying out of pocket, and have found little relief.
12. If I had to choose between an invisible illness or visible I would choose: the devil I know, invisible illness.
13. Regarding working and career: I miss my career as a clinical social worker, but right now social work, or any other work, are not possible for me right now due to severe symptoms of chronic pain and chronic fatigue.
14. People would be surprised to know: that socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable.
15. The hardest thing to accept about my new reality has been: that good days are dangerous and so is trying to keep up with other people!
16. Something I never thought I could do with my illness that I did was: gardening---thanks to fibro-friendly container gardening!
17. The commercials about my illness: give the impression that there are "treatments" and a possible "cure" for everyone with fibromyalgia. I have tried these treatment and they HAVE NOT worked for me.
18. Something I really miss doing since I was diagnosed is: being able to anything I want to do, anytime I want to do it and for however how long I want to engage in the activity.
19. It was really hard to have to give up: bowling in leagues with my hubby and friends.
20. A new hobby I have taken up since my diagnosis is: Knifty Knitting
.
21. If I could have one day of feeling normal again I would: cry.
22. My illness has taught me: the art of patience, the skill of pacing, the importance of self-discipline and the benefit of routine.
23. Want to know a secret? One thing people say that gets under my skin is: Are you feeling better? OR Are you doing better?
24. But I love it when people: offer to drive, help me run errands, don't mind coming to my house and understand when I need to go home and rest.
25. My favorite motto, scripture, quote that gets me through tough times is: from Randy Pausch:

"But remember, the brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people."
26. When someone is diagnosed I’d like to tell them:
“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.”
~Orison Swett Marden
27. Something that has surprised me about living with an illness is:
the amount of time I spend alone.
28. The nicest thing someone did for me when I wasn’t feeling well was:
allow me to talk about how I was feeling and cry.
29. I’m involved with Invisible Illness Week because:
I can't be the patient blogger and advocate I want to be, for myself and other people living with chronic invisible illnesses, if I don't stand up and tell my story to the blogosphere!
30. The fact that are you reading this list makes me feel: visible, recognized, accepted, hopeful, empowered, honored and connected to other people
.


Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com


ADDENDUM
: Invisible Illness Week is being celebrated once again from September 13 to 19, 2010.



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3 comments

Miss Diagnosis said...

I enjoyed reading this and see how many of our answers were similar, but also the different perspective you had on others.

Trisha Pearson said...

Hi Selena, Great job on the 30 things meme! I admire your strength in dealing with so many health issues. I know from experience that fibromyalgia alone is enough to deal with.

Lana C. said...

Gosh, I feel so similar about much of what you wrote. Having chronic illness/disease is not a simple thing to accept. You are very aware and very kind to share all that you do - it makes us not feel alone, especially when I read your words and feels as if they could be my own.