Sunday, September 18, 2011

30 Things About My Invisible Illness You May Not Know



I know I filled out this meme from the Invisible Illness Week website last year, but many things change in a year and quite a few of my responses are different, so I'm filling it out again to cover up the fact that I'm feeling too unwell to produce a decent article or essay.

1. The illness I live with is:
fibromyalgia, chronic fatigue syndrome, endometriosis, inflammatory arthritis.

2. I was diagnosed with it in the year:
fibromyalgia, inflammatory arthritis- April 2007; endometriosis- July 2007, chronic fatigue syndrome- July 2011

3. But I had symptoms since:
endometriosis- 2004, chronic fatigue syndrome and inflammatory arthritis- mid 2006, fibromyalgia- December 2006.

4. The biggest adjustment I've had to make is:
Learning to live with limitations and finding different dreams to focus on within these limitations.

5. Most people assume:
That I'm too young to have arthritis. Ever heard of the term hereditary?

6. The hardest part about mornings are:
Waking up feeling like I've been hit by a bus and wondering how the heck I am going to get through another day.

7. My favourite medical TV show is:
Greys Anatomy.

8. A gadget I couldn't live without is:
My laptop. Hands down. Blogging would be near impossible without it.

9. The hardest part about nights are:
Being unable to sleep because of pain.

10. Each day I take:
 (7) pills and (8) vitamins (no comments, please)

11. Regarding alternative treatments I:
Will stay away from anything that claims to have a cure. I'm pretty skeptical due to past experiences.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible. As much as living with an invisible illness is incredibly difficult, I am so thankful that I can still pass for "normal" and have control over who knows about my illnesses.

13. Regarding working and career:
I am currently unable to work due to a flare in fatigue and unresolved back pain. I hope to be able to go back and study early childhood education one day.

14. Most people would be surprised to know:
That chronic fatigue syndrome has more symptoms than just fatigue and that the word "fatigue" doesn't even come close to describing how debilitating this illness can be.

(Yes, this is me in 2007, 6 months after diagnosis. I told you I can have anyone fooled that I represent the epitome of "healthy")
 
15. The hardest thing to accept about my new reality has been:
The loss of control. I have no control over whether or not I will have a good or bad day in terms of pain and fatigue levels. The unpredictability is frustrating but I've learnt to cope by going with the flow and being spontaneous; making the most of the good days and learning from the bad days.


16. Something I never thought I could do with my illness was:
Get my license.

17. The commercials about my illness:
Are so misleading. Arthritis isn't just an old person's disease.

18. Something I really miss doing since being diagnosed is:
Going for long runs to de-stress.

19. It was really hard to have to give up:
Going to university, studying a course that I loved and seeing my friends every day.

20. A new hobby I have taken up since my diagnosis is:
Blogging, baking and piping cupcakes, nail art, cardmaking and scrapbooking.

21. If I could have one day of feeling normal again I would:
Get up early, go for a run and go to work.

22. My illness has taught me:
That my good enough is good enough.

23. Want to know a secret? One thing people say that gets under my skin is:
"Everyone gets tired". Guaranteed to make me feel like punching you in the face. If everyone was as tired as I feel the world would be chaos, get some perspective!!

24. But I love it when:
People show that they are trying to understand. I don't expect you to understand, but it helps if you at least try to.

25. My favourite motto, scripture, quote that gets me through the tough times is:
" I really do think that any deep crisis is an opportunity to make your life extraordinary in some way." ~ Martha Beck

26. When someone is diagnosed I'd like to tell them:
Be your own advocate. Doctors don't know everything.

27. Something that has surprised me about living with an illness is:
How much blogging helps. I am so thankful for such an amazing, accepting and wonderful blogging community. I am so proud to be apart of it.

28. The nicest thing someone did for me when I wasn't feeling well was:
My sister went to the shops and bought me a gorgeous shabby chic storage box that I wanted (you all know me and shabby chic!). So sweet.

29. I'm involved in Invisible Illness Week because:
I'm awesome! No, seriously, it's important to know that you are not alone and that there are people out there who care. There is always hope!

30. The fact that you read this makes me feel:
Like I have a voice. I appreciate you taking the time out to care enough to be informed about the impact of invisible illnesses. Thank you, you are awesome! x

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4 comments:

JudithWesterfield said...

Keep blogging, decorating cupcakes, painting your nails and doing the things you can do. I can not imagine how it would be to have all you have at such a young age. You are so much more than your physical body.

Miss Chronically Creative said...

oh I will! Having a chronic illness is really a blessing in disguise- I get to know amazing people like you! x

Anonymous said...

I really appreciate what you had to say today. I sometimes try to ignore the fact that I have a my illnesses. I try not to take naps during the day and have more time with my husband, before the kids get home from school. So, when I get really tired and my patience wears a little thin, my husband always says to me "what's the matter?" I find it so frustrating. I really feel like he should know. But I really only have myself to blame, because I don't take as good care of myself as I could. I count my blessings every day though, and you are now on my list! Thank you for a place to vent and be understood!

Kathleen (jbaugh1481@aol.com)

picnicwithants said...

a great list.
I caught that part at the beginning though, I'm sorry you aren't feeling well. I know, we never feel "well", but as well as your normal is, so you can do more. (I hope that made sense.)
And I agree with your answer to Judy, having a chronic illness is often a blessing in disguise, we meet a lot of inspiring people, and we find out much more about ourselves than others do, we don't take things for granted.....

Keep up the creative work.
wendy

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