[bonus Thursday post for #invisibleillness week!]
So it turns out this is Invisible Illness Week in the twitter-sphere, and there is a thing going around, where bloggers answer questions about living with their illness. I thought it sounded like a good way to explain my crazy situation... But about halfway through, I realized I don't have the energy for 30 questions. So here are my
30 10 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Over a dozen doctors, a lot of good theories, but no definite answers... there are a bunch of symptoms but the big ones are: really terrible neuropathy, motor control issues, and muscle weakness/fatigue.
I used to be able to run 5 miles no problem as part of a full day, these days I have trouble getting through the grocery store.
3. 2. But I had symptoms since:
Symptoms were lurking in the background for awhile, but I ran a big race 2 years ago, and could not get my feet back under me.
Kept thinking I would eventually 'shake it off' until a bad episode sent me to the emergency room about a year and a half ago.
4. 3. The biggest adjustment I’ve had to make is:
Accepting that there are things I can't physically do and learning how to balance energy and activities across good days and bad days.
5. 4. Most people assume:
I'm not sure why, but it's been hard for me to talk about the extent of everything... so then people only know a piece of what's going on, and might think that I just have occasional migraine headaches (one lasted 10 days. seriously.), or that the 'pins and needles' is a sort-of subtle twingy sensation (it is worse. much much worse).
But I am learning how to Talk About This better -- with doctors, and with friends and family, and the world at large.
8. 5. A gadget I couldn’t live without is:
ipad with Kindle, Amazon, and Netflix apps ("dad was right")
iphone with Siri. Siri saves me daily: "Siri set a timer for 10 minutes." "Siri remind me to take medicine in 8 hours..."
9. 6. The hardest part about nights are:
If I can't sleep I hate knowing that the next day will be a lost-day.
14. 7. People would be surprised to know:
How different bad days are from good days -- and how much I wind up paying for fully taking advantage of good days.
How incredibly grateful I am for the gift of community. Before I was sick I was involved in a lot of things that I just can't do anymore.. but I have been incredibly blessed to have been led into new communities that care and look after each other and extend great grace and understanding when I feel like I'm being flaky or inconsistent.
18. 8. Something I really miss doing since I was diagnosed got sick is:
Running and hiking!!
22. 9. My illness has taught me:
It is continuing to teach me how to ask for help when I need it and how to be more assertive.
And it has really opened my eyes to the way the medical system works and how difficult the journey to a diagnosis can be.
25. 10. My favorite motto, scripture, quote that gets me through tough times is:
"When my heart is overwhelmed, lead me to the rock that is higher than I" Psalm 61:2
"Remember you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know" A A Milne (paraphrased)
*Ways That I'm Not Well: the ridiculous ways in which life is different even though I look the same.