Invisible Illness Survey:
1. The illness I live with is:
My four I will focus one for this survey are
Asthma, ABPA, Gastroparesis, & Chronic Pain/Fibromyalgia.
2. I was diagnosed with it in the year:
Asthma in '98, ABPA in '10, Gastroparesis '13, and Chronic Pain/Fibro '13.
3. But I had symptoms since:
Asthma- 1996
ABPA- 2010
Gastroparesis- 2011
Chronic Pain/Fibro- 2011
4. The biggest adjustment I’ve had to make is:
Giving up public schooling, sports and all other extra-curricular activities, doing spirometry, pollen counts, etc.. before I can even go outside, numerous medications several times a day and many other things.
5. Most people assume:
That asthma can't be that big of a deal, that they know someone with asthma and all that person has to do is take an inhaler and they will be okay. Exercise will help get rid of my symptoms/illnesses. So on and so forth.
6. The hardest part about mornings are:
When you have chronic illnesses, you never wake up in the morning feeling "completely refreshed" and ready to take on a new day. You are still dealing with the multiple symptoms and issues the previous day left you.
7. My favorite medical TV show is:
Grey's Anatomy, without a doubt!
8. A gadget I couldn't live without is:
My phone/computer. I have met so many wonderful people who all have chronic illnesses, whether it be the same or different. We're all spoonie sisters. (if you don't know what I'm referring too, please read the Spoon Theory link to the right!)
9. The hardest part about nights are:
Simply trying to get to sleep, no matter how exhausted and tired you are.
The feeling that you "over-did it", even if you hardly did anything.
10. Each day I take __pills & vitamins.
29-35 pills (depending on the day), 2-4 inhalers or nebulizers, 3 injections, nasal spray,
11. Regarding alternative treatments I:
I have a Port-A-Cath for when I used to receive different types of infusions, I have a Gastric Pacemaker/Neuro-Stimulator,
I have tried more "natural" things versus medications, biofeedback..
12. If I had to choose between an invisible illness or visible I would choose:
Trick question, if I could choose.. NONE. With invisible illnesses, I'm sometimes okay with people not being able to see how sick I truly am by looking at me, but it does get frustrating at times because they simply have no clue what I'm going through and just how much I'm fighting. Visible illnesses would be hard with everyone knowing you're sick all the time or being known as "the sick girl" but also people wouldn't necessarily think you're over-exaggerating or making it up all the time.
13. Regarding working and career:
I worked for about 3 months when I came to terms with understanding that my health came first and I could not hold a job. I, by a miracle, graduated high school on time, and will start college in the fall.
14. People would be surprised to know:
Just how much myself and other people with chronic illnesses go through on a daily basis.
15. The hardest thing to accept about my new reality has been:
I think the hardest thing to accept is simply having a new reality. How doctors, nurses, appointments, admissions, treatments, ER visits, medications, are now my new normal.
16. Something I never thought I could do with my illness that I did was:
Graduate, on time and with my class.
17. The commercials about my illness:
Occasionally there will be an asthma one or medications for Fibromyalgia.
I wish they would spread awareness about different illnesses more than trying to get people to use their medication or something but I don't really pay attention or think much of it.
18. Something I really miss doing since I was diagnosed is:
Playing softball/soccer/volleyball, going to public school, and being able to keep up with friends.
19. It was really hard to have to give up:
Just my health, as cliche as that may sound.
Something I once had control over, and that I now have no control over at all.
20. A new hobby I have taken up since my diagnosis is:
I enjoy reading more, playing board/card games, and blogging.
21. If I could have one day of feeling normal again I would:
Run, play volleyball, eat anything I wanted,
22. My illness has taught me:
"You never know how strong you are, until being strong is the only choice you have."
"You can go a lot farther than what you thought was the end."
23. Want to know a secret? One thing people say that gets under my skin is:
"You look so good, you must be feeling all better." I know some people are only trying to be nice or just start conversation when they say this, but as horrible and miserable I always feel inside, hearing I look good, isn't really a compliment for me.
24. But I love it when people:
Understand and don't try to minimize my symptoms or illnesses like they aren't a big deal.
25. My favorite motto, scripture, quote that gets me through tough times is:
Too many to list! I try to put a favorite quote/scripture on the end of each blog post!
26. When someone is diagnosed I’d like to tell them:
You will get through it. As hard as it gets at times, and the moments when it feels like you can't possibly go on anymore, you can and you will. You are so much stronger than you give yourself credit for. Just hang onto hope, hope that one day, things will get better. & to connect with other people fighting chronic illnesses, the people you connect will are true life-savers.
27. Something that has surprised me about living with an illness is:
Other teens/people fighting the same or different chronic illness. They are the most brave, most inspiring people I have ever had the pleasure to get to know! They're my "spoonie sisters" and the support I receive from them is amazing.
28. The nicest thing someone did for me when I wasn’t feeling well was:
This is where I will give a shout out to my amazing, incredible friends. You guys were there for me every step of the way; helping me catch up on schoolwork, encouraging me on bad days, and visiting me in the hospital. I couldn't have asked for better friends, and would not have made it this far without you.
29. I’m involved with Invisible Illness Week because:
It isn't currently Invisible Illness Awareness Week but I do participate in it, because I am a face with invisible illnesses. I know how it feels because I live with them every single day.
30. The fact that you read this list makes me feel:
Loved and inspired. Thank you for reading them all!