30 Things About My Invisible Illness

If you haven't seen this meme, head on over to Graceful Agony; where I picked it up.  It's designed to promote Invisible Illness Week.  I hope to read your answers, too!

30 Things About My Invisible Illness You May Not Know

 

1. The illness(es) I live with is:
It’s complicated; it can probably all by summed up by saying ‘Lyme Disease’ but it’s so much more than that, including multiple co-infections, Chronic Fatigue Syndrome, polycystic ovarian syndrome, dysautonomis, multiple chemical sensitivities, and celiac disease

2. I was diagnosed with it in the year:

Celiac was diagnosed in 2002; Lyme in 2008 and everything else in 2009

3. But I had symptoms since:

the late 1990’s with a gradual onset

4. The biggest adjustment I’ve had to make is:
Slowing down!  I can no longer go, go, go non-stop.

5. Most people assume:
That they know what fatigue is and/or if I’d just exercise I’d feel better.

6. The hardest part about mornings are:
Waking up!  No, not really; mornings are my best timeJ

7. My favorite medical TV show is:
Grey’s Anatomy, b/c it doesn’t deal with anything really medical.  I like to watch HOUSE once, but it lost my respect when it said Lyme was never present without a rash.

8. A gadget I couldn’t live without is:
My iPhone – makes my life manageable.  When I leave the house my brain shuts down and I’d never know what I was supposed to be doing without my iPhone.

9. The hardest part about nights are:
Getting HOT!

10. Each day I take __ pills & vitamins. 

I take 9 different meds; totally 11 pills daily and 1 injection three times a week

11. Regarding alternative treatments I:
have tried a lot; liquid vitamins, herbal antibiotics, acupuncture, etc. 

12. If I had to choose between an invisible illness or visible I would choose:
I would choose one with an end – whether invisible or visible.

13. Regarding working and career:

I loved my work when I was working, but it was too hard once.  Now I love staying at home being the best mom I can be.

14. People would be surprised to know:
That I’m actually an extrovert!

15. The hardest thing to accept about my (not-so-new) new reality has been:

Is that there is no end in sight …

16. Something I never thought I could do with my illness that I did was:

be a good mom.

17. The commercials about my illness:

There are no commercials about my illnesses

18. Something I really miss doing since I was diagnosed is:

Lots of things … all stemming from having enough energy.  Enough energy to exercise without crashing, enough energy to just get up & go, being able to go anywhere at night that sort of thing.

19. It was really hard to have to give up:

My independence

20. A new hobby I have taken up since my diagnosis is:

Scrapbooking.  I’ve become much more internalized and want to capture the memories!  Plus, it’s a lazy, non-active hobby – I’ve never had one of those before!

21. If I could have one day of feeling normal again I would:

I would spend a day out on the town (museum, park, whatever) with my son & a night out with my hubby.

22. My illness has taught me:

That most of your friends aren’t really your friends, they just want what you can do for them.  Once you can no longer ‘give’ to the relationship; it’s over.

23. Want to know a secret? One thing people say that gets under my skin is:

That they know what tired is – they have no idea.  Chronic fatigue is tired in a way no one else can understand and is so much more than just fatigue.

24. But I love it when people:

People care anyway

25. My favorite motto, scripture, quote that gets me through tough times is:
God has a plan and while I may not understand it, it all fits together for His good.

26. When someone is diagnosed I’d like to tell them:
You are not alone and you can get through this!

27. Something that has surprised me about living with an illness is:
to take advantage of the good times, remember them & cherish them; don’t let them pass you by and don’t get bogged down with the negative stuff.

28. The nicest thing someone did for me when I wasn’t feeling well was:
bring my family dinner

29. I’m involved with Invisible Illness Week because:
I live with it every day …

30. The fact that you read this list makes me feel:

LOVED