30 Things About My Invisible Illness You May Not Know

Note – I borrowed this page from the Invisible Illness Awareness Week blog. I give them full credit for developing this idea and think it’s a great way to share some ideas and information. You can visit them at: invisibleillnessweek.com, linked below. Thanks to them.

1. The illnesses I live with are: Chronic Intractable Pain, Bipolar Disorder Type II with Ultra Rapid Cycling and Mixed States, Depression, Migraines, Asthma, Fibromyalgia, SAD, Sleep Apnea, Prostate Cancer (in remission), ED.
2. I was diagnosed with it in the year: Asthma – at birth (1950), Migraines – 1976, Back Pain – 1977/1988/1995, Depression – 1980, 1988, Bipolar Disorder Type II – 1995, SAD – 1998, Fibromyalgia – 2000, Sleep Apnea – 2012.
3. But I had symptoms since: I was born in some cases like the asthma obviously, but the bipolar disorder and depression too. I also have had overall pain for a long long time. The Sleep Apnea is new but I think I’ve had it a long time too.
4. The biggest adjustment I’ve had to make is: Giving up Control.
5. Most people assume: I’m fine. After all, “I Look Good”….
6. The hardest part about mornings are: getting out of bed and trying to move. I hurt….
7. My favorite medical TV show is: House of course. He’s so brutally honest it hurts to watch sometimes but it’s worth it. And I’ve loved Hugh Laurie since his English comedy days…Like Black Adder and A Bit of Fry and Laurie.
8. A gadget I couldn’t live without is: My Computer. It keeps me connected with the world, and lets me write my journals.
9. The hardest part about nights are: Sleeping and waking up in pain too often. Needing to pee and not being able to, again and again.
10. Each day I take _49_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I’ve found that whatever works is worth trying. I’ve had success with Naturopathy, Acupuncture and other alternative methods. But some are bunk so be careful.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. Sometimes I Want to hide it…. Pity is awful.
13. Regarding working and career: I can’t do “Jobs” anymore, since a bad breakdown in ’95. But I miss working terribly. I used to always identify with my Work. Now I have to identify with Me. It’s a challenge but it’s worth it.
14. People would be surprised to know: That I am as ill as I am. It scares me sometimes. I”m sure I’m going to die young (I’m only 62 now…)
15. The hardest thing to accept about my new reality has been: Asking for Help and Receiving it.
16. Something I never thought I could do with my illness that I did was: Going outside alone when I was severely Agoraphobic
17. The commercials about my illness: Are annoying or don’t exist, but a few capture some aspects of what I feel like I’ll admit.
18. Something I really miss doing since I was diagnosed is: Having spontaneous sex.
19. It was really hard to have to give up: Hiking in the mountains and going backpacking.
20. A new hobby I have taken up since my diagnosis is: I’ve started gardening again since I moved in with my partner in his house. It’s grand.
21. If I could have one day of feeling normal again I would: Go for a looooong hike in the mountains with my partner.
22. My illness has taught me: To be more compassionate towards others and towards myself. And Patience. And learning to simply BE and not DO. But I have a lot to learn still.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re Energy Feels so Good and Peaceful….” ( especially when I have a Migraine…)
24. But I love it when people: Help me out without my asking them to. It happens a lot with my friends and those who know me and I love them for it.
25. My favorite motto, scripture, quote that gets me through tough times is: Give It Time…
26. When someone is diagnosed I’d like to tell them: Take a deep breath. Life goes on…
27. Something that has surprised me about living with an illness is: How cruel people can be with judgements about my illnesses and why I can’t do the things they think I Should.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take me out of the house when I was too scared to do it alone.
29. I’m involved with Invisible Illness Week because: I’m just starting with it so I can only say I think it looks like a good idea and I support it wholeheartedly. Check out their link in this question.
30. The fact that you read this list makes me feel: Like maybe you care. Do you? ( Can you tell I’ve been burned too many times…? 😉

Thanks for taking the time to read this long list,

Steve

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