30 Things about my invisible illness you may not know:
1. The illness’ I live with is: New Daily Persistent Headache (NDPH) Postural Orthostatic Tachycardia Syndrome (POTS) Elhers Danlos Syndrome Type III (EDS III)
2. I was officially diagnosed with it in the year: June 2011
3. But I had symptoms since: NDPH Since 14th January 2010 and POTS since 2005
4. The biggest adjustment I’ve had to make is: Learning that I can’t do everything and that doesn’t make me a failure.
5. Most people assume: That I’m lazy, faking it or exaggerating.
6. The hardest part about mornings are: Waking up and realizing that I have to spend another day in constant pain.
7. My favorite medical TV show is: House and Greys Anatomy
8. A gadget I couldn’t live without is: Laptop.
9. The hardest part about nights is: The pain is usually at it’s highest at night.
10. Each day I take __ pills & vitamins (no comments please): At the minute 4 different types and injecting 3x a day. It has got up to over 10 different types of medication though.
11. Regarding alternative treatments I: Have tried, Osteopathy, Physiotherapy, Acupuncture, Massage, Reiki, you name it I’ve probably tried it.
12. If I had to choose between an invisible illness or visible I would choose: Visible.
13. Regarding working and career: I had to drop out of school last October on my 3rd attempt of year 12. And I am unable to work.
14. People would be surprised to know: That I’m actually sick, and that’s the reason why you think I’m lazy and that I most definately am not faking it.
15. The hardest thing to accept about my new reality has been: That I can’t do every single thing I want to do, and having things taken away from me that I’ve wanted to do but can’t like school and university.
16. Something I never thought I could do with my illness that I did was: Pass my driving test in Dubai.
17. The commercials about my illness: They don’t exist, most people don’t even know that my illness’ exist let alone have commercials about them.
18. Something I really miss doing since I was diagnosed is: Being able to go to school and participate properly.
19. It was really hard to have to give up: School
20. A new hobby I have taken up since my diagnosis is: Lying in bed and watching TV series does that count?
21. If I could have one day of feeling normal again I would: I don’t even know.
22. My illness has taught me: That you should never take a pain free, healthy normal life for granted.
23. Want to know a secret? One thing people say that gets under my skin is: When people say i get headaches NO I have ONE headache, headaches implys that it comes and goes that is not correct it has never gone.
24. But I love it when people: Ask genuinely how I’m feeling.
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t actually have one, I’m quite a negative person (don’t tell me that I will feel better if I’m positive tried that it doesn’t work).
26. When someone is diagnosed I’d like to tell them: Keep fighting and stay strong, you are not alone, the chronic pain and illness community is actually quite big on facebook and the blogging community.
27. Something that has surprised me about living with an illness is: Just how sick I actually am and how much pain I am in all the time, I never thought this much pain existed, I was wrong.
28. The nicest thing someone did for me when I wasn’t feeling well was: My sister giving me a cuddle and kissing my head to make it feel better.
29. I’m involved with Invisible Illness Week because: It’s so very important to spread awareness of invisible chronic illness’ as it’s the only way we will get rid of the stigma of ‘it’s all in your head’.
30. The fact that you read this list makes me feel: Great, Thank you for taking the time 🙂