Invisible Awareness week shines a light for Awareness that is Spoonies need! I found this “30 Things” on WildSister .com and am passing them along to you. Here are my “30 Things.” Join in, like, share, SPREAD THE AWARENESS!!!
1. The illness I live with is: Adrenal Insufficiency (SAI,) Fibromyalgia, Osteoporosis, Chronic Fatigue, GERD, Hypothyroidism, Depression, Anxiety, PTSD, Insomnia, MultiSystem Degeneration of the Autonomic Nervous System and many many more!
2. I was diagnosed with it in the year: 1996- 2016
3. But I had symptoms since: way before I was diagnosed.
4. The biggest adjustment I’ve had to make is: every aspect of my life.
5. Most people assume: Since I look okay that I must feel okay! & that I am just a drama queen.
6. The hardest part about mornings are: Waking up, taking meds, and making myself face another day.
7. My favorite medical TV show is: I don’t watch tv much.
8. A gadget I couldn’t live without is: my walking stick.
9. The hardest part about nights are: getting to sleep! Between the pain/discomfort and insomnia, sleep is elusive.
10. Each day I take __ pills & vitamins. (No comments, please:) 13 different pills and 9 different vitamins.
11. Regarding alternative treatments I: have tried so many with not enough result to keep paying the price.
12. If I had to choose between an invisible illness or visible I would choose: invisible.
13. Regarding working and career: I can barely take care of myself much less work.
14. People would be surprised to know: what I really go through. And that I do notice the doubt you have about my ongoing problems. I do notice the friendships that got stronger and the ones that are now superficial.
15. The hardest thing to accept about my new reality has been: My abilities vs inabilities.
16. Something I never thought I could do with my illness that I did was: complete the 50,000word NANOWRIMO!
17. The commercials about my illness: make life sound easier than it is.
18. The commercials about my medications: are just scary.
19. It was really hard to have to give up: my social life.
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: Hike, play outside, go dancing, play on a slip and slide, remember what fun was.
22. My illness has taught me: a lot about myself! A lot about the people around me! That everyone has a story, don’t judge based on what is visible.
23. Want to know a secret? One thing people say that gets under my skin is: “Pray!” I’m so sick of that one. And “you always have something wrong.” Umm duh- I know that!!! Oh and the worst “at least it’s not ______.” I hate that because it minimizes what I do have, and most of what they compare mine to has a freaking cure! Mine don’t have cures!!!
24. But I love it when people: ask, send a text, a message, a phone call just to ask how I am doing, and sincerely want to know the answer! That will bring me to tears.
25. My favorite motto, scripture, quote that gets me through tough times: “this too shall pass.” “It’s mind over matter and this don’t matter” “it already it what it is.”
26. When someone is diagnosed I’d like to tell them: I will be there for them! So many people say “it will get better” and it doesn’t, in fact it usually gets worse.
27. Something that has surprised me about living with an illness is: The way people treat me! That and how lonely it is.
28. The nicest thing someone did for me when I wasn’t feeling well was: it’s happened a couple of times; surprise me with a cozy new blanket &/or flowy pajamas, sweet snacks and a movie they want to watch with me. Yes the gifts are nice but it’s the thought, spoonies love pajamas, blankets, snacks, and movies/books! We love that you recognize what DOES make us feel good!
29. I’m involved with Invisible Illness Week because: Healthy people need awareness of what we actually go through. We need support from or friends and family.
The medical community needs awareness that research is needed because yes you can cure most cancers but can you relieve this pain?
30. The fact that you read this list makes me feel: like you do truly care about how I am doing, if you have questions do not be afraid to ask. You questions show that you are at least curious about what I go through.
Ps I copied this from Wildsister.com