30 Things About My Invisible Illness You May Not Know

By NicoleM Wednesday, September 09, 2009

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27. Something that has surprised me about living with an illness is: the inaccurate or out of date information on the Internet about migraines.
28. The nicest thing someone did for me when I wasn't feeling well was: my husband brushes my hair to ease my pain and to relax me
29. I'm involved with Invisible Illness Week because: we need more people aware that just because you can't see someone physically ill, doesn't mean they aren't in pain.
30. The fact that you read this list makes me feel: that there is hope and that together we can make a difference.

You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

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Comments (8) | Add comment

Karen H

9/10/09 4:03pm

You took the words right out of my mouth........thank you!

Karen

iam2cross

9/10/09 5:47pm

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.

iam2cross

9/10/09 5:49pm

Anonymous

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.

karen

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!

Anonymous

9/11/09 12:33am

Thank-you so much.I started reading this and started to cry.I am new to this migraine disease and some times it gets to me.Your letter made me feel so much better and I know I am not alone.So thank-you from the bottom of my heart.

jay

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

chele

9/11/09 10:15am

You have hit the nail on the head..LOL... Thank you for being soooooo articulate!!! I would like to add that a

30 Things About My Invisible Illness You May Not Know

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