Invisible Illness Week : 30 Things Meme

6 years ago
National Invisible Chronic Illness Awareness Week is September 12th - 18th 2011. As a part of the online awareness campaign, bloggers and others are writing up the Thirty Things Meme on Social Networking sites all over.
So, my friends, my list:

1. The illness I live with is: Bipolar, Anxiety, Agoraphobia, Hypothyroid, Fibromyalgia, Peripheral Neuropathy, Fibromyalgia, Lupus (SLE), cancer survivor

2. I was diagnosed with it in the year: Psych disorders beginning in 1987, Hypythyroid in 1993, Cervical Cancer in 1993-96, Fibromyalgia 2006, PN 2007, Lupus 2008

3. But I had symptoms since: Psych symptoms started in the mid 80's, worst of my physical autoimmune symptoms in 2004.

4. The biggest adjustment I've had to make is: slowing everything in my life down to about 1/2 speed

5. Most people assume: that I am flaky or lazy or duck out on commitments. This is in part due to last minute inability to leave the house or worsening physical symptoms

6. The hardest part about mornings are: pain and nausea making getting moving on anything productive very difficult. I also wake each morning to a very big anxiety attack

7. My favorite medical TV show is: I only watch House and Burden of Proof for medical shows. I love them both. I am a big House fan, not because of the whole "It's not Lupus" thing either.

8. A gadget I couldn’t live without is: my iPhone

9. The hardest part about nights are: it's a toss up between the painsomnia (insomnia due to overwhelming pain), or the night sweats

10. Each day I take __ pills & vitamins. (No comments, please) 12 pills 4 vitamins

11. Regarding alternative treatments I: try just about anything once. I love acupuncture and massage but massage starting setting off flares, hurts too much. Also, alternative care gets expensive.

12. If I had to choose between an invisible illness or visible I would choose: I don't think I can make this choice, I don't think any illness is better or easier than another

13. Regarding working and career: I have recently lost my 15 year job/career and am learning to be a consultant and contractor. I guess the benefit is that I can work fewer hours, work from home. I guess.

14. People would be surprised to know: That there are days when I can do a lot, a lot more than some healthy people. I am not lazy, given a good day I am very productive and want to be productive.

15. The hardest thing to accept about my new reality has been: I am not in what is considered the "normal" circle of society anymore. If I was a stay at home wife/mother people would think "how nice" but when they find out that I am sick, I hear "oh". It's hard to be pitied or looked down on.

16. Something I never thought I could do with my illness that I did was: help others

17. The commercials about my illness: I see the fibro commercials for Lyrica which did not work for me, or sleep aid commercials that didn't work for me and I just laugh.

18. Something I really miss doing since I was diagnosed is: since my symptoms which started before my diagnosis, I just miss being more carefree, I miss being able to not plan so much "just in case"

19. It was really hard to have to give up: doing what I want, when I want and not worrying about whether I could "handle" it.

20. A new hobby I have taken up since my diagnosis is: blogging, writing

21. If I could have one day of feeling normal again I would: Clean up some messes being ill has caused

22. My illness has taught me: I am a piece of something much bigger and I have a voice. My pain has a voice. My illness has taught me to be quiet and listen to the other voices more carefully, to listen to what someones voice and pain and laughter is really saying. Slow down, look, listen.

23. Want to know a secret? One thing people say that gets under my skin is: It's not what people say, it's what they don't say. I have learned a lot about people by who has stuck around. If you have stuck around long enough to still be saying things to me, I am very patient.

24. But I love it when people: treat me like they always have, and when they are here for a visit, they don't ask what they can do, they just do something mundane and silly like take out the trash or sweep my kitchen floor. If you ask me what I need done, I will say "nothing, really thanks".

25. My favorite motto, scripture, quote that gets me through tough times is: I have so many, it just depends on the circumstance. "As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others." is one I really try to live by. That is a quote by Audrey Hepburn.

26. When someone is diagnosed I’d like to tell them: read everything you can by any reliable source you can find. Ask questions, many many questions. The only stupid questions are the ones you don't ask. If your doctor doesn't like answering a lot of questions, you need a new doctor.

27. Something that has surprised me about living with an illness is: When people ask "How are you?" They really don't want to know.

28. The nicest thing someone did for me when I wasn't feeling well was: people who have brought me food, folded laundry, walked my dogs, all of those simple things are really the very best.

29. I’m involved with Invisible Illness Week because: I want more people to see how important it is to be aware of how many people around you could be suffering, bravely but invisibly. They could be in your office or on the bus next to you. Someone that could use a smile, or a little extra help on a bad day.

30. The fact that you read this list makes me feel: grateful


Jules Shapiro

As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others. 

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