Understanding Invisible Illnesses

the other day i was talking to a friend about what i go through and she had like a million questions for me, all the while looking at me as if she was going to catch what i have. i have had so many people say to me why don't you smile, why don't do go out anymore, or say we never see you anymore, why did you leave the party so soon, why do you always look mad, why are you sitting so far over their.  Man, sometimes all i want to do is wear a tee shirt thats says I HAVE MIGRAINES, THATS ALL. 

i can't stand the fact that i have to live my life around these STUPID migraines.  i wake up each day thinking, can i go shopping for food today, go to the post office, go to my friends wedding shower, go to bible study, take my dog for a walk, clean my house, cook my husband food.  THIS MAKES ME SICK, in soooooooo many ways.

i really understand of all what you are saying.  no one sees us, and too often no one cares.

Your  post brought tears to my eyes.  It is the life I am living.  I can no longer work either because I have 2 - 4 migraines a week.  I have tried so many preventatives I lost count. I also can make no plans because I might have a migraine or I may have already used my 2 abortives for the week.  I am afraid to go anywhere for fear it may trigger a migraine since the triggers are so numerous.  I am sad to say I feel your pain and know what you are going through.  Hopefully, with the new knowledge regarding migraines research will produce a preventative created just for migraines.  Take care.

I know so much what it is. I have new grand babies and can't  promise to help with them. It tears me to be that way. I would like to be the one who look after them during the day instead of letting strangers take care of them. But they can't count on me.

I don't know why I feel guilty. I have fibromyalgia and arthtitis. The worst is that I don't look sick or when I do I hide. No one ask me anymore. I had to tell them so often thatI would like to but I had to cancel too many times.

Life sucks.

How true how true.  I've suffered with migraines, fibromyalgia and arthiritis and herniated disc in the neck for 30 years ... it took 20 years to get properly diagnosed ... prior to that it was all in my head .... they were right only for the wrong reasons .. lol

Six years ago I had to add CRPS to the list after an injury to my right hand ... oh great another invisible condition ... now I can't work ... most meds I can't take due to sensitivity and side effects ... I no longer make plans ... because I hate making that last minute phone call to cancel ... I have a couple of friends that do seem to understand .... but of course it's still difficult when I look fine.

Been going thru menopause the last couple of years and the migraines get worse during that time .... now instead of just a kaleidescope aura ... I now get double vision .. very weird ... I can be talking to someone and all of a sudden - double vision - I don't even say anything ... I just wait it out try to cover one eye without being obvious and hope that it doesn't last too long ... then I excuse myself and take my maxalt and lay down on the sofa or bed.

I'm told after menopause this should ease up .... I can't believe I'll be glad to get back to what it was before ....

It is good to have a place to vent ... and to know that others fully understand ....

Good luck to all

Keep smiling and live your life true to yourself ...

Hi Jasmine - thank you for your post.  I've had migraines for some time, I want to say more than 15 years, but I am apprehensive about really sitting down and counting b/c it's so depressing to me.  I currently don't work right now, and I seem to have gotten to a place where my preventative/rescue meds have me at about 8 migraines a month, but then I somehow relapsed to about 15, I wanted to go back to work.  I now have to rethink this.  I get sick of the comments too (I have 2 kids). 

My biggest pet peeve "Did you take something, why don't you take an aspirin or tylenol?"  They have absolutely NO CLUE.  I take a deep breath and explain that taking those medications is like drinking water, and that I take prescriptions....that what I have are MIGRAINES, not merely headaches, and that it's so bad that I can't even eat or hold down water, like Emergency Room bad.  Then the look in their eye sort of changes, but I think it's a look of confusion.   

You're so right in that some of these illnesses that are not 'visible' make it difficult for others to understand.  I still, at times, don't think my husband gets it.  But he's become more sympathetic over the years, and I appreciate that so much.  I have hope that something better will come of all of this in the future in the public eye....

Jasmine,

I too am trying to find the cause of my chronic migraines. I am newly diagnosed and unusual to be at age 58 and have first onset. I was diagnosed with fibromyalgia at age 39 and have always had problems with smells and reactions to fragrances and being hypersenstive to smells and noises so that makes sense for the migraines. I also had allergies and sinus problems for past 30 years and my neurologist says I probably had migraines for many years and was misdiagnosed.

I am interested in this theory about the inner ear. I would like to hear more about that. Could you post more about that and what your physical therapist is doing? Where do you live? I have always had ear problems since I was a baby so maybe this is something that could help me with my migraines.

I am like you in that I have always done research and I am not giving up on finding out what can be done to help us migranuers lead a better life. I had no idea what a person with a migraine actually went thru before I was diagnosed! I was one of those people who thought it was just a really bad headache! Now I have educated myself and I am educating others so that the world can know how to react and give support and sympathy to someone who suffers with this horrible disease of migraines.

Please continue to post any and all information you have about chronic migraines and this inner ear theory. I will be waiting for your reply.

Thank you.

parisbabe