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The Invisible Illness meme

Because I said I would, and it is my word, so I must.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Some unknown neuro (maybe) thing that was desribed as "like a sister to MS, but without the permanent damage"; osteoarthritis; 3 partially herniating cervical discs.

2. I was diagnosed with it in the year:
Um ... who knows - the arthirits and neuro thing were blown off for years. The discs were in 2006, previous symptoms blown off - and oh, I have a theory the "neuro thing" is actually just symptoms from the slipping discs.

3. But I had symptoms since:
Joint pain since late teens; neuro thing since mid 20's; obvious neck issues - well the crunching started decades ago, but the knife-like pain was within the last 5 years.

4. The biggest adjustment I’ve had to make is:
Carefully parsing out my energy so I have some left for the things I want most to do.

5. Most people assume:
Not a clue what people assume.

6. The hardest part about mornings are:
That they exist. It takes a long time to move easily.

7. My favorite medical TV show is:
ER! Cancelled, the bastids.

8. A gadget I couldn’t live without is:
My laptop.

9. The hardest part about nights are:
I get tired way too early and they pass by way too quickly.

10. Each day I take __ pills & vitamins. (No comments, please)
One vitamin, and occasionally Tylenol Arthritis Strength. I took myself off of my script meds. And damn! This made me remember I need to start taking my Evening Primrose oil again.

11. Regarding alternative treatments I:
use an essential oil blend I make myself.

12. If I had to choose between an invisible illness or visible I would choose:
You know...invisible. I don't like to show weakness. <---- stolen, yet appropriate answer

13. Regarding working and career:
I'd gladly give up work. Can someone get them to still send me the paycheck? I am at my best when I do not have to work and I can stop, sit, sleep when I need to. I accomplish a lot more when unscheduled.

14. People would be surprised to know:
That I am in pain every day. Not always intense, not always every moment, but every damn day.

15. The hardest thing to accept about my new reality has been:
That it's here to stay as far as I can tell and that means there are things I'll never do because of the potential for permanent damage.

16. Something I never thought I could do with my illness that I did was:
No idea. I still do lots of things, just differently or slower.

17. The commercials about my illness:
Are stupid, mostly. And only the arthritis gets airtime, but that is okay because TV is for escape.

18. Something I really miss doing since I was diagnosed is:
Doing things based solely on choice instead of on pain and fatigue levels

19. It was really hard to have to give up:
Freedom. From pain. To do what I wanted when I wanted to do it

20. A new hobby I have taken up since my diagnosis is:
I guess wiling away hours online does not count? Sporadic (which I hope to make habitual) yoga.

21. If I could have one day of feeling normal again I would:
Burn that feeling into my memory so I could call it up at any time.

22. My illness has taught me:
To have patience with myself; to every now and again ask for help

23. Want to know a secret? One thing people say that gets under my skin is:
"Honey --- just wait until your MY age..." or, "If you think THAT'S bad, let me tell you about me" or any other one upmanship attempt. It's not a contest. Really.

24. But I love it when people:
Notice the really bad days and do for me, without stating it out loud.

25. My favorite motto, scripture, quote that gets me through tough times is:
I refuse to become what I loathe. <---- this works in all areas

26. When someone is diagnosed I’d like to tell them:
You're true self remains unchanged

27. Something that has surprised me about living with an illness is:
That I'm to the point where I'm not pissed off at it all the time

28. The nicest thing someone did for me when I wasn’t feeling well was:
Not resent me for not doing what was expected

29. I’m involved with Invisible Illness Week because:
I gave my word I'd do the meme. :P~

30. The fact that you read this list makes me feel:
Open, vulnerable, uncomfortable. Now, erase it from your brain, damnit!


Comments

( 5 comments — Leave a comment )
estaratshirai
Sep. 17th, 2009 04:11 am (UTC)
We never had this whole conversation. :3
pjvj
Sep. 17th, 2009 11:32 am (UTC)
Hahahaha I <3 you.
labrys6
Sep. 17th, 2009 05:58 am (UTC)
We have some astonishing similarities! Yes, Evening Primrose Oil rocks!
I actually use the time off and on at the computer as my break time to better pace myself. On really lousy days I tell myself "Work 30 minutes and you can have 20 at the computer." or some such thing.

And yes, neck disks messed up can make all KINDS of annoying neuro-ish crap.
We hates it, Precious.
pjvj
Sep. 17th, 2009 11:34 am (UTC)
EP oil does rock. When I quit taking my scripts it took "taking pills" completely out of brain. I had to retrain myself to take my vitamin, which I still sometimes skip due to lack of brain.

You have more self-discipline than I do - I think I'd opt for 20 minutes work and 30 minutes computer time. Ha!
labrys6
Sep. 17th, 2009 03:22 pm (UTC)
LOL...oh, "discipline"? Well, unlike another online acquaintance who has been told by her son that her disease (MS) is NOT a "literary metaphor" for wondering aloud if overwork had contributed....I do seriously speculate that my own intense driven damn-near-martinet-quality life led to the speed bump that is my degenerating spinal disks following multi-level fusion. That bare minimum of discipline is all that is left...and yes, there are certainly days when the time "zones" get reversed!
( 5 comments — Leave a comment )