She's a character, she has opinions.

30 Things About My Invisible Illness You May Not Know

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iiweekadget-dontmissit11. The illnesses I live with are: Multiple Sclerosis, Depression, General Anxiety Disorder, Diabetes, ME/CFS, Asthma

2. I was diagnosed with it in the year: It ranges from asthma in 1987 to MS in 2011.

3. But I had symptoms since: With MS, I had symptoms since I had the shingles in 2008.

4. The biggest adjustment I’ve had to make is: Not being able to work or go to school.

5. Most people assume: I’m better or worse than I actually am.

6. The hardest part about mornings are: Waking up into a bad pain or disability day and realizing any plans I had must now be scrapped.

7. My favorite medical TV show is: I guess it’s Royal Pains, but I don’t like it because it’s a medical show. (Once they did a spinal tap on someone’s living room floor! OMG, NO!)

8. A gadget I couldn’t live without is: My smartphone. It stores my med list, my appointments, alarms, brings information to me, and brings me to the world when I otherwise can’t get up and out.

9. The hardest part about nights are: Being woken up by pain and being unable to return to sleep.

10. Each day I take 17 (did I count that right?) pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: consider them, try them, and think of them as something that works hand in hand with my conventional treatments. Massage, especially, works wonders for me.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t everm make this choice because I think everyone’s particular illness is the worst one for them.

13. Regarding working and career: I miss it. I miss it sorely. It’s a tough thing to talk about so I rarely do.

14. People would be surprised to know: I’m not sure. I’m an open book about my illnesses.

15. The hardest thing to accept about my new reality has been: Not being able to do what I want when I want.

16. Something I never thought I could do with my illness that I did was: I don’t think that way. I tend to assume I can do anything and then find out after trying.

17. The commercials about my illness: Are pretty much fine. I can’t say I’m swayed by them one way or another.

18. Something I really miss doing since I was diagnosed is: Being able to make plans and keep them without illness interrupting.

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

20. A new hobby I have taken up since my diagnosis is: No new hobbies, just more of existing hobbies.

21. If I could have one day of feeling normal again I would: I feel normal now. But if I could have one day pain-free and able to move like I used to I would go outside and run and run and run.

22. My illness has taught me: Patience. Patience with others and patience with myself.

23. Want to know a secret? One thing people say that gets under my skin is: I’m really touchy about people scowling and commenting when I use my handicapped parking placard. I have it for a reason, it is mine, and I do need it. You haven’t seen my MRI films so you have no way of knowing about my illness. Also? Hi, do you see my cane?!

24. But I love it when people: Extend invitations to me that acknowledge I may not be able to keep plans I make. Things like “when you’re feeling good” and “spur of the moment” are wonderful things to hear. They show me the person understands.

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one. When times are tough I turn to family and friends.

26. When someone is diagnosed I’d like to tell them: You are not alone. Seek out information on your condition. Find a good neurologist with a good nurse.

27. Something that has surprised me about living with an illness is: My personal resilience. I had no idea I could withstand so much.

28. The nicest thing someone did for me when I wasn’t feeling well was: The Husband often does nice things when I’m unwell.

29. I’m involved with Invisible Illness Week because: I think it’s important to spread this knowledge.

30. The fact that you read this list makes me feel: as if you want to understand me.


Written by tldegray

September 9, 2013 at 7:00 am

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