This is a reader-submitted story.
1. I have had chronic daily headache (CDH) for __16__ years.
2. The first headache I remember is: I was younger than age ten.
3. After the headache started, it took __11 years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates. Level fluctuates, but the pain is always there.
5. My typical pain level ranges from: 3-8
6. In addition to pain, my symptoms include: photosensitivity, phonosensitivity, nausea, racing heartbeat, dilated pupils, insomnia.
7. Treatments I have tried include: massage, chiropractic, homotherapy, many different medications both over the counter and prescription.
8. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: go to bed, dark room, take meds, try and sleep.
10. The most frustrating part about having CDH is: not knowing if it will be a good or bad day.
11. Because of CDH, I worry about: disappointing those I love.
12. When I tell someone I have CDH, the response is usually: how do you do it?
13. When I see how little research and information exists on CDH, I feel: frustrated and sad.
14. Having CDH has affected my work/school life by: I have had to cut back my work schedule severely.
15. Having CDH has affected by family life by: My husband has had to take over and help with the daily household chores.
16. The one word that best describes my experience with CDH is: altering
17. My best coping tools are: encouragement from family and friends.
18. I find comfort in: fuzzy blankets and soft pillows!
19. I get angry when people say: not really angry, but sad: “I had a headache yesterday, not as bad as yours…” As if they diminish their own pain by comparing it with mine, when pain is such a subjective and personal thing.
20. I like it when people say: I know this is difficult for you, but I’m really happy to see you here anyway.
21. Something kind someone has done for me in relation to CDH is: my best friend is in the process of helping me put together a migraine coping kit, for when I’m not at home and it gets bad.
22. The best thing a doctor has ever said to me about CDH is: you’re not a lost cause, and we can help you feel better.
23. The hardest thing to accept about having CDH is: there is no cure right now, no medications that consistently help.
24. Having CDH has taught me: patience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Isaiah 33:24 – “and no resident will say “i am sick.”
26. If I could go back to the early days of my diagnosis, I would tell myself: this isn’t your fault, and hang in there.
27. The people who support me most are: My husband, my parents, and a few close friends.
28. The thing I most wish people understood about CDH is: it is always there, if I look okay it is because I have my “everything’s fine” mask on.
29. Migraine and Headache Awareness Month is important to me because: if awareness is increased, perhaps we can get more effective management tools.
30. One more thing I’d like to say about living with CDH is: I’m working on dealing with the unreasonable guilt I feel when I have to say no. I want to make everyone happy, but I can’t do that, and take care of myself at the same time. Also, I’m trying to give myself permission to make my health a priority.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.