30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness



This is a questionnaire that many of my friends with chronic illnesses are filling out, so I thought I'd take my turn. I did something similar to this last year, but I changed some of the questions. This time I'm going to follow the "rules," and answer them all the way they are written. Or try to anyway!


30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Myasthenia Gravis


2. I was diagnosed with it in the year: 2003


3. But I had symptoms since: 1995


4. The biggest adjustment I’ve had to make is: Going from independent, working, and strong to dependent, disabled and weak


5. Most people assume: Either I can do anything or nothing.


6. The hardest part about mornings is: Just getting going. Sometimes I can't see well, sometimes I can't breathe well because I haven't done a breathing treatment yet...it takes FOREVER to get ready to go somewhere.


7. My favorite medical TV show is: Mystery Diagnosis for sure! Love it! I like almost all of them, IF they are accurate.


8. A gadget I couldn’t live without is: My computer. I have to have it, it has to work. Other than my cell pohone, it's really the only technological thng I have!



9. The hardest part about nights is: I have to sleep on a stupid wedge because I can't breathe lying on my back. I can't lay on my tummy because of the trach. In heaven, I will ONLY sleep on my stomach, I guarantee you that!



10. Each day I take __ pills & vitamins. 20+


11. Regarding alternative treatments I: go to the chiropractor, but please don't tell me about this herbal rememdy you know, or how much better I would feel off my meds. I can't take many herbal things because they will make the MG worse, and I've TRIED or been FORCED (when I was pregnant) to go off some of my meds and I almost die. SO no thanks.


12. If I had to choose between an invisible illness or visible I would choose: visible. I get SO SICK of the looks, judgements, etc. If I could I would wear signs, I would.


13. Regarding working and career: I used to obsess about working outside the home, but that desire is fading a little. I know that my most important jobs are wife and mother, homeschooling mom and daughter of God. That's a full plate already!



14. People would be surprised to know: I'm having a hard time with this one....So YOU tell ME if something about me surprises you!!


15. The hardest thing to accept about my new reality has been: not being able to work, being so dependent on others.


16. Something I never thought I could do with my illness that I did was: have my precious baby boy!!!



17. The commercials about my illness: non-existant. Hmm...that gives me an idea!



18. Something I really miss doing since I was diagnosed is: going away at the drop of a hat. No machines to take, no prescriptions to refill, no pages and pages and pages of medical notes.


19. It was really hard to have to give up: my independent life


20. A new hobby I have taken up since my diagnosis is: blogging!!!


21. If I could have one day of feeling normal again I would: Roll around on the floor with my son.



22. My illness has taught me: Not to judge. To be impatient. But most of all, how absolutely precious life really is.



23. Want to know a secret? One thing people say that gets under my skin is: But you look so good!



24. But I love it when people: ask me how I'm really doing no matter how I look



25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 55:8-9 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." This gives me comfort knowing that God is in control, and that He sees the WHOLE picture.



26. When someone is diagnosed I’d like to tell them: Life isn't over. It will change, for sure. But it can still be good. Find a support group pronto. Your family and friends may be super supportive, and that's great, but they can't 100% understand.



27. Something that has surprised me about living with an illness is: how much stronger I am than I ever thought I could be. To God be the Glory for that!



28. The nicest thing someone did for me when I wasn’t feeling well was: offer to take my child and let me rest. Bring dinner



29. I’m involved with Invisible Illness Week because: I'm all about education. I want people to understand that MANY people have chronic, invisible illnesses, and they are not alone.



30. The fact that you read this list makes me feel: AWESOME!!!