Since it's invisible illness awareness week and this is going around i thought i would answer the questions and i hope all of you reading it with invisible illness's also do this post and those without share it and spread awareness.
1. The illness I live with is:
POTS (Postural Orthostatic Tachycardia Syndrome).
2. I was diagnosed with it in the year:
2013
3. But I had symptoms since:
I think 2011 is when i first noticed my tachycardia but abdominal pain before that for years
4. The biggest adjustment I’ve had to make is:
Learning to limit myself and ask others for help when i need it.
5. Most people assume:
I am fine most of the time because when i put on make up i look healthy and fine and they don't understand how bad i actually feel. They also assume POTS is not serious because its not life threatening.
6. The hardest part about mornings are:
Getting out of bed without passing out. Mornings are always the worst and when i am most fatigued and have the worst tachycardia.
7. My favorite medical TV show is:
Untold Stories of the ER
8. A gadget I couldn’t live without is:
Does my computer count? I watch my favourite shows to help keep me distracted.
9. The hardest part about nights are:
The muscle pain, not being able to get comfortable. And the insomnia
10. Each day I take __ pills & vitamins.
11
11. Regarding alternative treatments I:
I have never tried it
12. If I had to choose between an invisible illness or visible I would choose:
Somedays i wish i had a visible illness when ignorant people don't realize how much pain i actually am in. But other days its nice to be able to hide if if i don't want anyone to know how i feel. 50/50 for me.
13. Regarding working and career:
I am a student right now, but thats super hard for me and i miss a lot. Last year my school asked me to leave because i was sick too much so starting a new school this year which i haven't been able to go one day yet.
14. People would be surprised to know:
I try very hard to be positive but its hard to do
15. The hardest thing to accept about my new reality has been:
Losing many friends and not being able to go out with people and live a normal teenage life.
16. Something I never thought I could do with my illness that I did was:
When i go out for long periods of time and am able to do so without fainting i am surprised, but pleasantly surprised.
17. The commercials about my illness:
Don't exist.
18. Something I really miss doing since I was diagnosed is:
Going out to hang out with friends and i miss having a social life.
19. It was really hard to have to give up:
many friends
20. A new hobby I have taken up since my diagnosis is:
Taking pictures
21. If I could have one day of feeling normal again I would:
Go to school and go out to the parties i am always missing
22. My illness has taught me:
Not to judge people by appearance. I never understood it very well being a typical teenager, but now i experience getting judged everyday.
23. Want to know a secret? One thing people say that gets under my skin is:
When people complain about being tired, there is a difference between being tired after a long day or being severely fatigued after just sitting up. When they say they know how you are feeling. Also i hate the most when people complain about things like having a cold and being in bed for 2 days.
24. But I love it when people:
I get a simple phone call or text asking how i'm doing, but only when i know they genuinely care and are not just simply curious and don't really care how i'm actually feeling. Or when people offer to do something simple without asking like offering to stay home and watch a movie with me.
25. My favorite motto, scripture, quote that gets me through tough times is:
Do not have one at the moment right now :/
26. When someone is diagnosed I’d like to tell them:
I understand what you are going through and i want them to talk to me because i DO care and will completely understand. To look for a doctor who also genuinely cares about your well being and is educated of your illness. Don't just stay with a doctor because you found him if you are not satisfied and are completely happy with him. Also to surround yourself with loving and caring people because you will need them when times get tough.
27. Something that has surprised me about living with an illness is:
How different your life can change, I didn't take POTS seriously at the beginning and i didn't think it was something i would notice it everyday. But things got worse and your life completely changes.
28. The nicest thing someone did for me when I wasn’t feeling well was:
My family bought me pink roses recently and watched my favourite show with me. I've been having an extremely rough time and it made me happy to know they care about me and want me to be happy.
29. I’m involved with Invisible Illness Week because:
I live with it everyday and it SUCKS, i want to find a cure and spread awareness to people who have been misdiagnosed and are needing treatment. People need to know about the illness's people can live with everyday. Hopefully if we spread awareness people will take us seriously and help find a cure.
30. The fact that you read this list makes me feel:
Happy :)
Thank you for reading this, if you read the whole thing. Together we can fight and find a cure and show people that we are fighting a real battle and what we have to live with everyday is serious to us and it affects us majorly.
Share this and other peoples, make your own or just talk about it.
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