Saturday, October 3, 2015

30 Things About My Invisible Illness You May Not Know

     Invisible Illness Awareness:

Hello everyone! Invisible Illness Week is coming to an end and to help spread awareness I have decided to do the '30 Things About My Invisible Illness You May Not Know' meme that is going around. An invisible illness is an illness that is not visible from the outside, meaning from the outside we look 'healthy' or 'normal'. Having this type of illness can be very frustrating because many will think you are faking it, lazy, or making up our symptoms for attention because we do not look sick from the outside. 

1. The illness I live with is: I live with many but the main one is Autonomic Dysfunction (Dysautonomia/Postural Orthostatic Tachycardia Syndrome)
2. I was diagnosed with it in the year: 2013 (but wasn't truly confirmed until 2015)
3. But I had symptoms since: 2010
4. The biggest adjustment I’ve had to make is: Adjusting to my new normal & having to give up hobbies and dreams I had that I can't pursue due to my health
5. Most people assume: That I will 'get better soon'
6. The hardest part about mornings are: feeling 'hungover' (headache, lightheaded, dizzy, nauseous, etc); waiting for medication to kick in
7. My favorite medical TV show is: I don't really watch medical shows much anymore, I live it and don't want to watch it
8. A gadget I couldn’t live without is: my cell phone; it keeps me in contact with the outside world, keeps me entertained when i'm stuck in bed & it helps distract me from symptoms
9. The hardest part about nights are: the fatigue/exhaustion from the day, migraines & light sensitivity can be worse at night
10. Each day I take __ pills & vitamins. (No comments, please) 4 (I have taken up to 15 a day, but my illness is rare so there isn't drugs specifically for my neurological condition. Plus I am very sensitive to most medication.
11. Regarding alternative treatments I: have tried them before and they can be beneficial for some things. Acupuncture helped my migraines a lot.
12. If I had to choose between an invisible illness or visible I would choose: Invisible Illness. I get stared at enough when I use my wheelchair or park in handicap parking, I would hate to get stared at even more because I 'look sick'. With an invisible illness I can at least fake a normal healthy 20-something girl on my good days
13. Regarding working and career: I am not healthy enough to work or go to school....
14. People would be surprised to know: I lift weights!! A few months ago I began taking a new medication and it has helped my blood pressure enough that I am able to workout a little bit on good days. Hopefully building muscle will help my body to manage my symptoms better. 
15. The hardest thing to accept about my new reality has been: My body calls the shots. It is in charge. If I had plans to do something but I wake up and can barely stand, I have to cancel my plans no matter how much I was looking forward to them.
16. Something I never thought I could do with my illness that I did was: Workout!! Dysautonomia comes with the symptom exercise intolerance. But the right combination of medicine has given me stable enough vitals to workout on good days. Its not easy and I do deal with some payback from my body, but I feel myself getting stronger & able to stand and sit longer. I still deal with symptoms daily and spend a lot of time resting, but it is progress! :)
17. The commercials about my illness: what commercials?...
18. Something I really miss doing since I was diagnosed is:Dancing. I miss dancing so much. 
19. It was really hard to have to give up: the idea that because I am not doing what others my age are doing that I am a failure. It is hard to not compare myself to others my age who are graduating college and starting careers.
20. A new hobby I have taken up since my diagnosis is: I have taken up quite a few different hobbies since my diagnosis but my current favorites are painting my nails, watching Netflix & blogging.
21. If I could have one day of feeling normal again I would: Ride rollercoaster rides all day, walk around lots, & dance with my husband
22. My illness has taught me: to appreciate what I do have, to enjoy the little moments, not take anything for granted & that the medical field does NOT know everything like they try to convince society. 
23. Want to know a secret? One thing people say that gets under my skin is: when people say I am looking really good... (it is an invisible illness - the outside does not reflect the inside.)  OR assume I am getting better because I was able to go out one day.
24. But I love it when people: understand I need rest & realize that going out and doing something will result in a flare of symptoms later that day or the next day.
25. My favorite motto, scripture, quote that gets me through tough times is: Quote - it is a bad day, not a bad life    Scripture - Isaiah 40:31 "But those who hope in the Lord will renew their strength, They will soar on wings like eagles, They will run and not grow weary, They will walk and not be faint"
26. When someone is diagnosed I’d like to tell them: You are not alone. I know you are not faking it. Connect with others online. Find a genuine doctor who cares about you & your health. Do not compare yourself to others. Listen to your body. Rest.
27. Something that has surprised me about living with an illness is: I am genuinely happy. My situation is not ideal, but being upset about the cards I was dealt 24/7 won't make me healthier. Also, I like who I am now more than I liked who I was pre-illness. It has made me kinder, more understanding and compassionate of others.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take care of me. Believe in me. Have my back & stand up for me when I was too weak to do so myself.
29. I’m involved with Invisible Illness Week because: I am sick of feeling judged for something I had no control over and didn't choose. We make hundreds of snap judgement about people we do not know on a daily basis. I ask people not to judge, you never know the invisible battle someone is facing. I also want everyone to be grateful for the health you do have, it could be taken in the blink of an eye. 
30. The fact that you read this list makes me feel: so happy & grateful. Thank you for reading about my invisible illness!! 

Please note: not everyone with my neurological condition can workout; I was bed bound for years & prior to my current medications, any small amount of exercise would make me so much worse I would have to consider the ER.

If you would like to read about others click here!

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