Thursday, October 1, 2015

WTINW*: Invisible Illness Week and 30 Things

[bonus Thursday post for #invisibleillness week!]

Invisible Illness Week 30 Things

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:

30 10 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

Noooo clue.

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. 


  1. So sorry you haven't got a proper diagnosis yet, but, like mine, it sounds like your symptoms are found in lots of conditions. I love my good days but boy don't we pay for them the next day? Hope you get some answers and more good days soon :)

  2. Yes, the hardest thing I've had to learn is how to find a balance I can maintain through the week, but every now and then a day is just to good not to take advantage of it! Thanks so much