2 years ago
ButterflyBlu
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My 30 Things: Invisible Illness Awareness Week
www.youtube.com1DAA50E1-0355-420D-A1AD-2C244287F3DCCreated with sketchtool.
One of my favorite songs for the bad days: "Fear" by Blue October (an amazing band!)

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

1. The illness I live with is: Narcolepsy, Fibromyalgia, and Chronic Back Pain
2. I was diagnosed with it in the year: Narco – 1996; Fibro – 2007; Chronic Pain – 2007.
3. But I had symptoms since: Narcolepsy – birth (Initially, everyone thought it was seizures.); Fibro – 2003; Pain – 9 months earlier.
4. The biggest adjustment I’ve had to make is: acknowledging my weaknesses and when it is time to take a break and slow down. Acknowledging that sometimes I have to ask for help.
5. Most people assume: That I am somehow a different person when they find out that I have an illness. Nothing changes, folks. The person that you have known this entire time is still who I am now. People also assume that I haven’t tried EVERYTHING to “fix it”.
6. The hardest part about mornings are: that they exist! :P Narcoleptics hate waking up, no matter when it is. So when I do wake up, it’s like trying to drag myself out of a pit to get to consciousness. Whenever I get shocks of cold air, it can cause my nerves to over fire and cause pain all over my body. This is just a part of Fibro. So getting out from under the covers can be a shock every morning. Plus, everything is stiff and painful until I move around a bit.
7. My favorite medical TV show is: House! <3
8. A gadget I couldn’t live without is: My iphone. Even when I am exhausted or in too much pain, I can lay down with my phone and read on my Kindle app, be connected to the world, or chat with friends – which is a HUGE help when everything is overwhelming me.
9. The hardest part about nights are: Because narcoleptics have a jacked up circadian rhythm and, thus, sleep cycle, I am usually awake when the rest of the world is asleep. That can get frustrating and lonely.
10. Each day I take __ pills & vitamins. (No comments, please) 7 pill prescriptions, 1 patch, and 2 vitamin supplements.
11. Regarding alternative treatments I: am interested in hearing about them, but don’t even think I am stupid enough to believe everything I hear. I am simply not gullible enough.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I am able to hide a lot of what I deal with and that works for me on a privacy level. Most people who find out what I deal with AFTER having known me for a while can’t believe that I dance and raise my son alone, homeschool, etc. I am fine with people never knowing, honestly… even if it isn’t the healthiest way to approach my illnesses.
13. Regarding working and career: I will not stop until someone MAKES me. I love what I do. It’s who I am.
14. People would be surprised to know: how much I do on a daily basis; how often I say I’m good when I’m not; how much I love this life…
15. The hardest thing to accept about my new reality has been: allowing others to help me and having days that I have to rest. >.<
16. Something I never thought I could do with my illness that I did was: continue dancing.
17. The commercials about my illness: make me laugh and shake my head 99% of the time.
18. Something I really miss doing since I was diagnosed is: not having to schedule medication times and see a doctor monthly. I’d love to have the money back that I pay on meds, too.
19. It was really hard to have to give up: certain foods that make migraines happen or Fibro worse. (Any sort of fake sweeteners, etc.)
20. A new hobby I have taken up since my diagnosis is: yoga. It helps with the nerve pain and back pain.
21. If I could have one day of feeling normal again I would: oh wow, I really don’t know. I try to do it all already.I guess I would just spend the day out doing Whatever I WANT without thinking about if it would cause pain. Maybe I’d go hiking on the more difficult trails. I hike a lot with the kid, but to take the harder paths would be awesome…
22. My illness has taught me: how strong I really am.
23. Want to know a secret? One thing people say that gets under my skin is: pertaining to narcolepsy: “Oh I feel like that, too! I’m always sleepy.” And “Have you tried getting 8 hours of sleep/caffeine pills/this coffee, etc.”
24. But I love it when people: realize how much I still do with this broken shell.
25. My favorite motto, scripture, quote that gets me through tough times is: "If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again."
– Flavia Weedn (And do it every day, if you need to.)
26. When someone is diagnosed I’d like to tell them: Take Your TIME. Get to know this disease. Meet other people who deal with it… they will have wisdom to share. Listen to your body. You’re not alone.
27. Something that has surprised me about living with an illness is: that, eventually, you learn that it doesn’t control you.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me a gallon of my favorite ice cream, a bottle of wine, and flowers… and then took my son for the day.
29. I’m involved with Invisible Illness Week because: I know what it feels like to go at this alone. We are stronger together.
30. The fact that you read this list makes me feel: nervous and happy, all at the same time?
Do you want to do this, too? Here's the questions:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
If you haven't seen it yet, this is what this card is all about.

Thank you for reading this!

<3 Stacey

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You ma'am deserves hugs and fist bumps 👊 You are so strong and the way you have tackled the illness is amazing! You are genuinely inspirational!
Wow, amazingly said. Thank you for sharing such personal information about yourself. It's not the easiest thing I know. For like, ever, I did not have the courage to speak truly of how i was feeling. To me, that was a sign of weakness. ( It made sense then) lol. It's nice to know that there are other people going thru similar conditions. I have fibro, chronic pain, chronic fatigue just to name a few. Almost every single word you said is exactly what i go thru except the narcolepsy. You are very strong and courageous for sharing this. I truly appreciate that!
@ButterflyBlu Although I do not have a disease, I do happen to have a physical disability. I have two above knee prosthetics. And though I've learned to live with being "outside the norm" physically I'm still struggling for accepting myself for being me. I do however understand your struggle with knowing when you need to hold yourself back and ask people for help. I tend to want to be independent, and not have to rely on anyone... But the truth is by trying to keep my own selfish pride I tend to push myself too far and end up hurting myself. Although I don't have any invisible disease, I can still sympathize and understand where you're coming from. And I will think of your amazing and inspirational story whenever I am having a hard time with my disability. Thank you for sharing a part of yourself with us. I am completely appreciative of what you've decided to share with us. Again, thank you so much!!!
@KaraHevner @KDramaKPop1015 thank you both for commenting and reading this. Doesn't it help somewhat to know that we aren't alone in this fight? Some people just fight in different ways. You are strong, too, because of these comments. @KaraHevner if you ever need to talk about this mess we deal with, let me know. I will totally listen and commiserate. <3 @KDramaKPop1015 YOU are amazing. I understand wanting to be independent... I fight to keep what independence that I can. I don't know if it's a matter of pride or my stubborn nature, but I push too far, too. Thank YOU for the kind words and for being strong and just for being you!! <3 Rmember, being outside the norm means that we are unique and special!! <3