Friday, September 17, 2010

invisible illness

I found this meme and decided I'd use it today. 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Epstein Barr Virus

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 1993 or so.

4. The biggest adjustment I’ve had to make is: learning how to listen to my body. Discern when exercise is going to energize me and when it is going to wipe me out. Determine what I am able to do in a given day.

5. Most people assume: I have no idea. I know that I used to assume that people who had chronic fatigue were just lazy and making up a disease to excuse it. So, of course, that's what I'm afraid people assume about me.

6. The hardest part about mornings are: waking up feeling just as tired as when I went to bed.

7. My favorite medical TV show is: Don't really have one. Dr. Who? No, that doesn't count. I watch re-runs of Emergency now and then.

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

9. The hardest part about nights are: The insomnia.

10. Each day I take __ pills & vitamins. Not as many as I should. There are supplements that can help, but I have a hard time getting into the routine. If I took everything it would be about 10.

11. Regarding alternative treatments I: am grateful. There is no help for CEBV outside of alternative medicine. Many main stream docs don't even believe in it. My doctor has provided some great information and treatments. Best of all, he finally diagnosed me. He's an MD, but uses alternative medicine, too.

12. If I had to choose between an invisible illness or visible I would choose: This is an interesting question. I'm not sure. I feel like I would get more understanding if it was visible. But I like that I look healthy on the days that I feel good.

13. Regarding working and career: I don't know how I could have a job if I needed to. I'm very thankful that I don't have to. I don't manage my work at home very well as it is.

14. People would be surprised to know: how relieved I was to get the diagnosis. Maybe. I don't know if that would surprise people or not. I can't think of a different answer.

15. The hardest thing to accept about my new reality has been: That it's permanent.

16. Something I never thought I could do with my illness that I did was: I have no idea. I would just erase this question, but then I'd have to re-do all the numbers!

17. The commercials about my illness: There are none. I wish there was more mainstream acceptance and information about it.

18. Something I really miss doing since I was diagnosed is: I've never had a lot of energy, but I miss being able to walk through the mall for hours or the zoo or museum without wanting to collapse into a puddle and cry.

19. It was really hard to have to give up: I don't know that I've given up anything. I just have to rearrange my schedule sometimes.

20. A new hobby I have taken up since my diagnosis is: Nothing.

21. If I could have one day of feeling normal again I would: Like I said, I've never had much energy. Before I got this virus I had chronic tonsillitis and that caused a lot of the same symptoms. I'm not sure I would know what to do with normal. I would probably go on a hike or something.

22. My illness has taught me: humility

23. Want to know a secret? One thing people say that gets under my skin is: you're just depressed. I don't get that now, but before I was diagnosed that's what every doctor told me.

24. But I love it when people: ask me how I feel and mean it. Realize that it is a real illness and give me grace when I can't follow through on something.

25. My favorite motto, scripture, quote that gets me through tough times is: They that wait on the LORD will renew their strength. They will rise up on wings like eagles. They will run and not grow weary. They will walk and not faint. 

26. When someone is diagnosed I’d like to tell them: aren't you relieved to finally have a diagnosis? I haven't actually met anyone who has been diagnosed since I was, but that's what I'd say. A person gets tired of being sick and not knowing why.

27. Something that has surprised me about living with an illness is: what a jerk I used to be about people with these kind of illnesses. I've been humbled a lot.

28. The nicest thing someone did for me when I wasn’t feeling well was: take up the slack. Unfortunately that falls on my husband most times. Poor guy has enough to do without doing my stuff, too.


  1. Kay, your willingness to be so open humbles me. I could feel your pain as I read your post. So much is given up when a long-term illness shows up. Your whole identity in some ways changes. It did for me. Hugs to you, my dear friend.

  2. i understand the husband having to do so much. for years i suffered with dizzy spells. just 2 years ago, i couldn't drive which meant no grocery shopping, no shuttling kids to tkd, etc. he had to do everything and most nights it was a struggle for me to cook dinner. i'm glad i was well by the time Glen Eyrie came around so i could meet you and the other awesome writers there.

  3. Thank you for sharing so much about yourself and how you are coping with your diagnosis. Finding Joy in the midst of your limitations must be a challenge at times.
    I am always so glad to see you at WFTJ.

  4. Thank you, Tonya. I know you can relate.

    Michelle, dizziness is terrible to deal with! I'm glad you were better for conference, too. I hope it has stayed away.

    Diane, thank you. I am always glad to see you, too. Sometimes I don't make it because of homeschool. But this last time I was too fatigued to even think about going. :( I miss everyone when I can't make it.


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