Gene that mutates to cause Tumor Necrosis Factor Receptor Associated Periodic Syndrome

Seven-Year-Old Julian’s 30 Things Meme

30 Things About My Invisible Illness You May Not Know

Written by Seven-Year-Old Julian, where an “M” appears, Julians Mummy has answered. 

julian11. The illness I live with isTumor Necrosis Factor Receptor Associated Periodic Syndrome.

2. I was diagnosed with it in the year: 2015

3. But I had symptoms since: 2012

4. The biggest adjustment I’ve had to make is: Not being able to run around like the other kids & taking breaks to rest on the cushions at school.

5. Most people assume: That it will go away.

6. The hardest part about mornings are: Sore joints.

7. My favorite medical TV show is: Operation Ouch.

8. A gadget I couldn’t live without is: Wheelchair when my legs lock up.

9. The hardest part about nights are: Being so tired & sore that brushing my teeth & getting into PJs hurts.

10. Each day I take seven pills & vitamins, & soon I have to start 2 injections a week. Mummy is learning how to do it so she can give them to me.

11. Regarding alternative treatments I: Have Reiki & it helps my head.

12. If I had to choose between an invisible illness or visible I would choose: No illness!

13. Regarding working and career: I go to school & Mummy made an education plan so that when I’m sick I have school in the hospital & at home too.

14. People would be surprised to know: That I have sores every day. I have a lot of pain, but I don’t complain about it.

15. The hardest thing to accept about my new reality has been: That my body is making too much of a protein that can turn my organs into rocks & stop them working.

16. Something I never thought I could do with my illness that I did was: Getting out of the hospital in time for the school holidays this week! But I did!

17. The commercials about my illness: There are none.

18. Something I really miss doing since I was diagnosed is: Not having to get lots of needles all the time.

19. It was really hard to have to give up: Running & going crazy!

20. A new hobby I have taken up since my diagnosis is: I’m starting swimming.

21. If I could have one day of feeling normal again I would: Do a whole day of exploring & looking for fossils without needing a break. The whole day!

22. My illness has taught me: M- This illness has taught me that the greatest teachers we could ever meet are our children. Julian is so unbelievably strong & inspiring.

julian23. Want to know a secret? One thing people say that gets under my skin is: M- People telling me they hope my son gets better soon. This chronic illness doesn’t have a cure & as innocent as that remark is it makes me feel like we are not understood.

24. But I love it when people: Visit me in hospital & do things we can do sitting down.

25. My favorite motto, scripture, quote that gets me through tough times is: The song “Live like a warrior”.

26. When someone is diagnosed I’d like to tell them: To take your medicine coz it helps you feel better. Don’t flush it down the toilet like I did!

27. Something that has surprised me about living with an illness is: M- How resilient Julian is. He might have had the most traumatic morning at the hospital ever, but by the afternoon he’ll be carrying on with his day like normal.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Jo, the play therapist, Julian in a hospital with doctor bearhelped me make a volcano with real lava & I got to play with dinosaurs while I was in the hospital ward.

29. I’m involved with Invisible Illness Week because: I want people to understand my TRAPS better.

30. The fact that you read this list makes me feel: Very happy that you spent all this time reading about me!