30 Things About My Invisible Illness You May Not Know

by Chronically Creative - Thursday, September 16, 2010

This is a meme from the Invisible Illness Awareness Week website. I've filled out a separate one in regards to life with Endometriosis on my other blog The Endometriosis Diaries.

1.The illness I live with is: Effusive inflammatory polyarthritis/Rheumatoid arthritis, Fibromyalgia syndrome, Chronic Fatigue syndrome and Endometriosis

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Endometriosis since 2004; arthritis, fibromyalgia and chronic fatigue since 2006

4. The biggest adjustment I've had to make is: adjusting to a new "normal" having to remember to take medications at certain times, being unable to study or work and live within the restrictions of pain and fatigue is really hard when you used to be healthy and energetic.

5. Most people assume: that because I look well, I must feel well

6. The hardest part about mornings are: the fatigue. Getting out of bed each morning is a huge challenge when all the medications that I'm on cause fatigue

7. My favourite medical tv show is: All Saints until it finished up. I was so devastated! They had a fibromyalgia patient on there once and it was a pretty accurate representation too which surprised me but I got a bit angry because they got to act and I have to live it for real every single day. I was going through an "it's not fair stage" when I saw that episode

8. A gadget I couldn't live without is: my laptop. Wouldn't be able to blog as much as I do without it

9. The hardest part about nights are: the pain. My pain gets worse at night time and trying to get comfortable enough to sleep is very difficult

10. Each day I take 32 pills and vitamins (no comments, please) and a weekly dose of methotrexate

11. Regarding alternative treatments I: am open but I prefer to do my own research and I always discuss it with my doctors first

12. If I had to choose between an invisible illness or visible I would choose: this depends on my mood and how frustrated I am with peoples ignorant and insensitive comments but as much as I hate having an invisible illness I would have to say I prefer invisible because although I may feel lousy, at least I look good and I am glad that I don't have everyone staring at me like I'm a freak because of a visible disability.

13. Regarding working and career: I am currently work disabled but I am in the process of setting up my own small craft business so I can work from home around the pain and side effects

14. People would be surprised to know: that I take a low dose chemo drug once a week for the treatment of rheumatoid arthritis

15. The hardest thing to accept about my new reality has been: missing out on so many precious moments with friends and family because I am too exhausted or sore, I'm missing out on the best years of my life but it just makes me appreciate and cherish the times when I am able to go out and have a good time so much more.

16. Something I never thought I could do with my illness that I did was: start two blogs!

17. The commercials about my illness: annoy me because they associate arthritis as be an old persons disease, young people and children have arthritis too!

18. Something I really miss doing since being diagnosed is: going for long runs

19. It was really hard to have to give up: studying Early Childhood Education- the career of my dreams

20. A new hobby I have taken up since my diagnosis is: blogging, scrapbooking, card making and nail art

21. If I could have one day of being normal I would: go for a long run on the beach

22. My illness has taught me: not to take anything for granted and not to worry about my life, to trust in God's plan

23. Want to know a secret? One thing people say that gets under my skin is: "you're looking well, are you feeling better?" Yes I look good, no I'm still sick- it's CHRONIC people!!

24. But I love it when people: say I can't imagine how difficult that must be. You are doing a great job. Is there anything I can do to help?"

25. My favourite motto, scripture, quote that gets me through tough times is: 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. Isaiah 40:31

26. When someone is diagnosed I'd like to tell them: don't be too hard on yourself. Allow yourself to grieve your former self but remember that who you are goes way beyond what you can and cannot do. Try not to focus on what you are no longer able to do but what it is still possible for you to do.

27. Something that has surprised me about living with an illness is: just how many people judge you based on how you look

28. The nicest thing someone did for me when I wasn't feeling well was: send me an encouraging book with "thinking of you" written on the inside

29. I'm involved with invisible illness week because: I want to raise awareness about invisible diseases. Our pain may be invisible but we are not

30. The fact that you read this makes me feel: supported. The fact that you took time out to read this and care enough to be informed is appreciated- thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5 day free virtual conference September 13-19, 2010 at http://www.invisibleillness.com/