13 September 2011

30 things about M.E. and me

1. The illness I live with is: Myalgic Encephalomyeletis (ME/CFS)
2. I was diagnosed with it in the year: May 2009
3. But I had symptoms since: Nov 2008
4. The biggest adjustment I’ve had to make is: Being housebound and 80% bedbound

5. Most people assume: I don't know about most people, but the 'common knowledge' in the press is that ME patients spend all our time being angry, making death threats to researchers, and refusing treatment because we don't want to admit we have a psychological disorder. They don't realize that we'd be perfectly happy to be treated psychologically if psychotherapy worked. It doesn't.
6. The hardest part about mornings are: The dark fog  
7. My favorite medical TV show is: I'm not able to watch television. Moving pictures and sound at the same time is too overstimulating for me.

8. A gadget I couldn’t live without is: My laptop. It's my connection to the world.

9. The hardest part about nights are:
The vivid nightmares where my parents (who are wonderful, supporting people) are being hateful to me and disbelieving of my illness.

10. Each day I take __ pills & vitamins. (No comments, please) 10 pills (4 different drugs), 2 vitamins

11. Regarding alternative treatments I: tend towards skepticism. Massage and osteopathy I find helpful if I have a good practitioner, but it's only symptom relief.

12. If I had to choose between an invisible illness or visible I would choose: I would choose an illness that was believed to be real and had genuine biomedical treatment options. I don't care about visible or invisible.

13. Regarding working and career: I haven't been able to work since I fell ill in November 2008. I tried two or three times between November and January to go back to work, but I couldn't manage.

14. People would be surprised to know: that I'm happy.
15. The hardest thing to accept about my new reality has been: The scorn heaped upon ME patients in the press. It hurts more than the pain, more than the helplessness, more than the cognitive disabilities.
16. Something I never thought I could do with my illness that I did was: Start this blog. I thought my health would need to improve a lot more before I'd be ready to speak.
17. The commercials about my illness: I've never seen any.
18. Something I really miss doing since I was diagnosed is: Just getting out of bed and deciding to impulsively go and do something. Now, leaving the house requires several days of planning and preparation at minimum, and several days of recovery.
19. It was really hard to have to give up: my self-identity as 'the smart one'. I'm not smart anymore. I have to struggle to think, to communicate, to find words. My memory is so poor that if you ask me what I did last night, I probably will answer 'I don't know'.

20. A new hobby I have taken up since my diagnosis is: Is Twitter a hobby?
21. If I could have one day of feeling normal again I would: Oh god, that would hurt too much - to know it was going to end again after a day. I think I would turn it down.

22. My illness has taught me: what it's like to enter the secret world of the disabled.
23. Want to know a secret? One thing people say that gets under my skin is: Don't worry, I'm sure you'll get better soon.
24. But I love it when people: believe me.
25. My favorite motto, scripture, quote that gets me through tough times is: "You know this is the way it is. You were born, and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it's happening to you." - Toni Bernhard
26. When someone is diagnosed I’d like to tell them: That's why I started this blog. I summarized all my advice to the newly diagnosed in: "I Have ME/CFS: Now What?"

27. Something that has surprised me about living with an illness is: How much a person can lose and still feel real.
28. The nicest thing someone did for me when I wasn’t feeling well was: The nicest would require me to remember, which is hard. So I'll say the most recent, which was my mom ordering me feather pillows after she read this post.
29. I’m involved with Invisible Illness Week because: being ill is my community now.  
30. The fact that you read this list makes me feel: Validated


  1. No, Happy, u r STILL sew smrt, truly! *G* This blog begs to differ with your own diagonosis. : )

  2. I saw your post and it inspired me to answer the same questions:

    And remember that you are still smart - illness can not take that away from you


  3. I agree with Clare above, you are still smart but the illness is masking it for the moment. I cant imagine what its like for you, feel free to chat to us or rant at us if it helps.
    Gill xx

  4. Thank you for posting. i have several illness both visible and invisible. after reading your post I feel less alone. artfulabilities.blogspot.com