1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since:2001
4. The biggest adjustment I've had to make is: learning how to say no, I cant be in 2 places at one time, nor can my schedule be packed full. I have to take some "me time"
5. Most people assume: that if I am smiling I am feeling fine, no I am just good at faking it, so you don't ask.
6. The hardest part about mornings is: nothing, I sleep in the mornings :)
7. My favorite medical TV show is: Eleventh Hour and House
8. A gadget I couldn't live without is: my yahoo toolbar
9. The hardest part about nights is: my restless leg syndrome
10. Each day I take: 3 Topamax, 10 sprays of Migra Spray and 2 capfuls of a liquid multi-vitamin
11. Regarding alternative treatments I: use meditation & aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: I wish I didn't have to chose, but visible would be my choice.
13. Regarding working and career: I am still lucky enough to to be able to work every day. My career is very important to me.
14. People would be surprised to know: I used to refuse to take medication. I hated to even take a Tylenol for a headache.
15. The hardest thing to accept about my new reality has been: that I do have to set limits for myself
16. Something I never thought I could do with my illness that I did was: I am learning to write and express myself through my blog. Hopefully I will be able to do something more in the future.
17. The commercials about my illness: there are commercials? I hate commercials
18. Something I really miss doing since I was diagnosed is: socially drinking
19. It was really hard to have to give up: a non set sleep schedule. I liked being able to go to bed when I wanted and sleep in how ever long I wanted too, now it is important that I go to bed at the same time and get up at the same time.
20. A new hobby I have taken up since my diagnosis is: learning as much as I can about migraines.
21. If I could have one day of feeling normal again I would: I would plan my normal day sometime in the future so I could actually plan something and know 100% that I was going to be migraine free.
22. My illness has taught me: do what you can on the good days and try to not feel guilty about what you left on the bad days
23. Want to know a secret? One thing people say that gets under my skin is: When I tell people that I have a migraine and they offer me a Tylenol, please don't, it doesn't help my migraine and just reminds me that I have an incurable disease.
24. But I love it when people: ask me about my doctor's appointments
25. My favorite motto, scripture, quote that gets me through tough times is: My disabling chronic illness is more real than your imaginary medical expertise. - You Don't Look Sick
26. When someone is diagnosed I'd like to tell them: even when you feel like you are at your wits end, or you feel like you have lost all hope, there is lots of web support and to keep the faith.
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30 Things About My Invisible Illness You May Not Know
9/10/09 5:49pm
Thank you for your post. I am so happy that you are able to keep working. I have not been able to find a preventative that works after many, many tries so I can no longer hold down a job. I have a lot of guilt about that even though I know I shouldn't. I have had migraines for 37 years and they have gotten worse each decade.
9/10/09 11:08pm
Hi, I had a lot of the same feelings. I had migraines start to develop in 2001, never had many headaches before, had over 300 migraines in 2004 and had to retire early from a job I loved. I saw 2 neurologists, had MRI's( fine), but felt some serious surgery & complications and further traumas may have changed my body chemistry. I was down to only 7 or 8 a month this yr., in the last 4 months. In the last 6 weeks, have had only 2 times I have had to take a Zomig Rapimelt for a migraine - seems like heaven on earth!
I found out last Oct. that I had become gluten and lactose intolerant, do most cooking at home the right way now, also had to learn to destress myself as much as possible. The weather is what affects me most now; before, I had just about every trigger going.
My faith has helped my family and I to never give up. Long road, but it has been worth it now. Best wishes for your future.
9/11/09 1:38pm
I also quit my job, had numerous tests and saw numerous doctors, and it turned out that gluten caused my headaches. So, if it was gluten for you, I wish more women would try a gluten-free diet, as the frequency and intensity increased with perimenopause. When I only had 4-5 headaches one month, my neurologist and I thought it was because of a blood pressure med I was taking as a preventative, but it wasn't. It was because I was on a Adkin's diet, which limits wheat-bread, bagels, etc - that was a big cue! I've learned I can get migraines from Annatto food coloring, caramel coloring or flavoring, and alcohol drinks. I also can get migraines for another reason - a physical impairment, but getting rid of gluten changed things wonderfully!
9/11/09 12:33am
9/11/09 12:55am
Yes,you have put into words all the problems that migraineurs face. It is the invisible part that is so frustrating, also that many women use the word migraine for ordinary mild headaches and people don't realise the severity of the pain we go through. Recently,i found a technique to reduce my pain during an attack and would like to share it. I just put on a tight elastic hairband around my head ,you know the kind we use for sports and gym, its unbelievable how much it helps! You can put it in different angles,depending on where the pain is and if the attack isn't too severe then you don't even feel the pain! That way,it even helps you to reduce the number of painkillers you need per attack. I was looking for a chance to share this and took this opportunity.
If it lessens the pain even one of us go through ,i'd consider myself blessed to have been able to help. Please try it next time you get an attack,it will surely help you.There's a scientific explanation for it too.In simple words,you can either feel touch sensations or pain not both.That is the reason why,we don't feel pain when you press or massage an area that hurts.The reason why people normally stamp on their toe is they hit it somewhere? to lessen the pain? Its a natural reaction by the body! Interesting huh? So since most of us do not have people to massage our heads during migraines,the elastic band gives the same effect and its so handy and easy to use.Good luck and God bless
9/11/09 10:15am
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You took the words right out of my mouth........thank you!
Karen
Thank you for your post. I am so happy that you are able to keep working. I have not been able to find a preventative that works after many, many tries so I can no longer hold down a job. I have a lot of guilt about that even though I know I shouldn't.