30 Things You May Not Know

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here it goes:

30 Things About My Invisible Illness You May Not Know (modified)

1. The illnesses (the big 3 at least) I live with are: Endometriosis, Fibromyalgia, Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: Endo 1999, Fibro 2006, CFS 2008
3. But I had symptoms since: Endo – Highschool (late 80’s), Fibro – potentially all my life, but significantly since my riding accident in 2003, CFS – again, potentially all my life, cuz I’ve always been tired
4. The biggest adjustment I’ve had to make is: Learning limitations
5. Most people assume: That cuz I am dressed, and moving that I am having a good day & expect me to go do ‘stuff’, whatever ‘stuff’ may be
6. The hardest part about mornings are: going to bed. Seriously! my sleep hours are midnight to noon.
6a. The hardest part about getting up after sleep: is the cramped & stiff muscles from not moving..
7. My favorite medical TV shows are: Grey’s Anatomy, House, & I loved ER from Day 1.
8. A gadget I couldn’t live without is: My PC.. it keeps me in touch with people, and lets me research and express myself.. (not quite what I think the question was asking for but there it is)
9. The hardest part about nights are: slowing down, physically, emotionally, mentally.. night time is my best time, typically my most functional time
10. Each day I take too many pills & vitamins. 2 in the wee hours, 5 at noon, up to 20 at midnight. and others as needed
11. Regarding alternative treatments I: am on the fence.. I can’t be bothered with acupuncture, but Osteopathy works awesome!
12. If I had to choose between an invisible illness or visible I would choose: neither.. I am sick of being tired, & tired of being sick!
13. Regarding working and career: I would so love to return to work! but I can’t it takes too much a tole out of me
14. People would be surprised to know: that I once considered modeling as a career choice.. plus-size modeling, but modeling nonetheless.
15. The hardest thing to accept about my new reality has been: the loss of so many people in my life, friends and family.
16. Something I never thought I could do with my illness that I did was: meet someone who would understand and accept me for me & all the health issues I have
17. The commercials about my illness: suck. they are all older ladies who come across as complaining
18. Something I really miss doing since I was diagnosed is: Camping, hiking.. Amusement Parks..
19. It was really hard to have to give up: Friendships & the socialization that went with it..
20. A new hobby I have taken up since my diagnosis is: colouring.. I’ve done several pieces of work for family & my medical team.. I have also got several miscellaneous craft projects on the go..
21. If I could have one day of feeling normal again I would: bask in the glory! If I didn’t have to pay for it later?? Grab all my friends (past & present) and go camping.. out under the stars, in the fresh clear air, the trees providing shelter & protection.. sitting in front of a campfire, roasting marshmallows and making s’mores.. cooking dinner outside! Chicken, Veg & potatoes straight from the coals! Yum!
22. My illness has taught me: that I can’t have whatever I want
23. Want to know a secret? One thing people say that gets under my skin is: that I should be working, not on Gov’t subsidy.. I even lost a friend with that comment. He said “Are you working or are you still milking the system!? Stop using your medical shit for an an excuse to live!” We’d been friends since grade 9, so it still hurts. :`(
24. But I love it when people: Offer to help.
25. My favorite motto, scripture, quote that gets me through tough times is: “How am I supposed to recover when I don’t even understand my disease?” ~ Girl Interrupted. White not necessarily all that positive, or in reference to a physical disease (was a mental health patient), it does show the need for more research to even understand what is wrong with Fibromites, or what causes Endo, or what CFS really is..
26. When someone is diagnosed I’d like to tell them: learn to read your body and pace yourself & do everything to keep otherwise healthy.
27. Something that has surprised me about living with an illness is: the communities of support that exist are phenomenal!
28. The nicest thing someone did for me when I wasn’t feeling well was: Opened the door for me. something so simple, but thoughtful. 🙂
29. I’m involved with Invisible Illness Week because: I have invisible illnesses and I think everyone should be aware.. awareness bring knowledge.. & that can lead to treatments, even cures, and maybe, just maybe, eradication of some of these conditions so that we don’t suffer invisibly.
30. The fact that you read this list makes me feel: Special. Thank you. & pls, let me know you were here..

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