Wednesday, September 30, 2015

30 Things About My Invisible Illness #invisiblefight

On September 9, 2009 I wrote the original post "30 Things About My Invisible Illness You May Not Know" and in honor of this year's National Invisible Illness Week, September 28th -October 4th, I decided to update that post. Below you'll see my current answers in fushia and the old answers are in black and I'll leave them that way if there isn't a change. Let's see what's different. Learn more at InvisibleIllness.com.


When I first wrote this I learned a few things about myself, I'm curious to see if the same will happen this time.

1. The illness I live with is: Actually, illnesses. Sjogren's Syndrome (a form of, relative to, strain of Lupus, Multiple Myeloma and fibromyalgia.
2. I was diagnosed with it in the year: 2009 and 2008, it was 1995 when I was diagnosed with MM.
3. But I had symptoms since: Around 1995
4. The biggest adjustment I’ve had to make is: Is realize how easy it is to hurt myself. The biggest adjustment I've had to make is lay down when I need to even if I don't want to.
5. Most people assume: I assume most assume that I am making it up. I'm just fine. I think it makes them feel better if I say, "I'm fine."
6. The hardest part about mornings are: Waking up to pain, tingling, stiffness, headaches and exhaustion.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop... no, my cell phone! Neither.
9. The hardest part about nights are: The tingling in my lower legs and my wrists and hands; hardly getting a complete night's sleep and doing all the nighttime tasks that are required of a parent: homework, baths, dinner, bedtime, etc., in addition to trying to get some more working in. The hardest part about nights is forcing myself to go to sleep.
10. Each day I take __ pills & vitamins. (No comments, please) About 10 total. About 20 now.
11. Regarding alternative treatments I: hope that I can afford to get herbs and some other natural alternatives as well as incorporate more yoga and some water aerobics to make the symptoms more bearable. I've tried essential oils and massage therapy - both of which work fairly well. Meditative breathing also helps.
12. If I had to choose between an invisible illness or visible I would choose: Now, what in the world do you say to that. I would say neither!


13. Regarding working and career: It's tough to work when you're in pain, lose focus 'cause of meds and symptoms and deal with the emotions of it all. Working from home is flexible, but stressful when relying on providing for yourself and your children. Although I love what I do, the pain and discomfort from sitting for more than 20 minutes or so is discouraging. I'm not able to sit upright for long and I do most of my work while reclining or laying. (I'm working with occupational and physical therapists right now to help with that.) You'd be surprised at how many ways you can prop a laptop. 
14. People would be surprised to know: I often have severe "attacks" where my body is weak, in more pain, sometimes my hands are swollen, my limbs are tingling and it sometimes takes days to recuperate. I've had attacks that last for a couple of days to two weeks.
15. The hardest thing to accept about my new reality has been: that when I do try to do something active that I've always loved to do I am most likely in pain for the rest of the day.
16. Something I never thought I could do with my illness that I did was: Hmmm??
17. The commercials about my illness: The only commercial I've seen is for fibromyalgia and it's pretty accurate.
18. Something I really miss doing since I was diagnosed is: I miss NOT going to the doctor.
19. It was really hard to have to give up: So far I haven't given up too much, but I am going to have to change my food intake and whatnot soon. It was really hard to give up the uh, brain freedom. I have such medicine, fibro and MM fog that I've had to stop getting frustrated when I can't think fast enough or come up with an answer or words.
20. A new hobby I have taken up since my diagnosis is: Nothing new yet. Art and collage journaling.
21. If I could have one day of feeling normal again I would: Take the kids to Six Flags, go bowling, ride a bike, race the kids down the street, run after the kids, pick my granddaughter up...
22. My illness has taught me: to try to live one day at a time. My illness has taught me that there are times I can only live one minute at a time.
23. Want to know a secret? One thing people say that gets under my skin is: Let me know if you need anything.
24. But I love it when people: Just show up to help. (Hasn't happened though.)
25. My favorite motto, scripture, quote that gets me through tough times is: Go confidently in the direction of your dreams. Live the life you've imagined. - Henry David Thoreau
26. When someone is diagnosed I’d like to tell them: Surround yourself with uplifting and helpful people.
27. Something that has surprised me about living with an illness is: Let me add something to that... Something that has surprised me about living with an INVISIBLE illness is that it doesn't change how other people live their lives unless they live with you. Everyone will move on whether you need help or not.
28. The nicest thing someone did for me when I wasn’t feeling well was: This is a tough one... my oldest daughter has done so much for me when I wasn't feeling well and when hubby and I were together he was pretty good when I wasn't feeling well... since then probably the nicest thing anyone has done is call me.
29. I’m involved with Invisible Illness Week because: it's one of the few things that I've found that's supportive and maybe it'll get the word out to non-illness sufferers that there could be someone in their life that doesn't look sick, but really needs more emotional, physical and spiritual support. Just because I smile doesn't mean that things are going well. Also, because it's cathartic to write about and I hope my words help others.
30. The fact that you read this list makes me feel: like you really care about me.

Do this today: Embrace someone who has an invisible illness.