30 Things About My Invisible Illness (Migraine) You May Not Know

I can SO relate to most of your statements - my all time favorites are "you don't look like anything is wrong with you" and "it must be nice to stay at home"  and " well, you have a husband to take care of you".  Not ONE of these rude remarks, lessen the impact of a chronic disease/disorder on the person, their lifestyle or their families!  I, too, miss who I used to be but am grateful for what I CAN accomplish on the days when I'm not in a dark room, taking meds.  I know you have fulfillment in helping others understand about this particular ailment - keep it up and all the best to you!!

Nancy,

What you have just written has more meaning to me than any other reading I have done since I have learned to read. What you have written is really beautiful to me and I am so thankful for you.

When you mentioned how the pain from this disease, and the other's that you have, how it affects not only you that is so painfully true.  I do not understand all yet. I do know of the stress and the trust. I can feel so much coming though and am scared and in no way looking forward to the rest.

I am not able to work. I even spent the last 14 years caring privately for the elderly so they could remain in their homes but no longer am I capable. My husband, we still are married and live together or should say reside together, has been supporting me for 2 years now. I also use part of that support for a developmentally disabled half sister. No one else in the family provides. Parents are gone. I have been working and have been denied SSD for my sister but still will try through arbatration. Do you know what I am trying to get at? The arguing never ends. Two years straight. Almost 8 years constant.  I am lost. 

I have had head pain since a very young child. My earliest memories are at about 7 1/2years. No it has not been easy. Grew up in a very disturbed home. Married, two girls, divorced and remarried this time 27 years. I now have issues with depression myself. Always, had to deal with it in some way or another but in the last 8 it has really gone down hill and I believe more serious than the docs think. I also fibro, oseoarthritis through out my body, a couple other hard to spell neurological diseases, and very serious cognitive issues since being on topamax for 8 years.

When your husband looks at you and slowly says Yea, "I can look at you and sometimes see what attracted me to you." Is that to make me move around here quicker or move out?  

Nancy you are great.  The way you look at things. You take joy in so many ways. You are like the quiet one who sit in the corner and then tells a great joke.  Thank you for sharing you 30.

This is an eye opener for me. I have always suffered from headaches but they became worst 4yrs ago. They left from 3 to 9 on a scale of 10 and some days they are 11. I can't stand sleepless nights knowing that it only makes the migraines worst. My doctor still has not discovered what could make me better. I have so many triggers - weather, menstrual/hormonal, allergies...I think I don't have a life anymore. I feel handicarped and at 31yrs I don't know if anyone understands what that means. I hate it when I look at someone and they seem to think I enjoy sitting at home. My husband is so supportive but with an invisible illness how much is enough? I feel sorry for me and my kids and what I could do that I can't do now. I pray but I get angry at God for allowing this to happen. I have 3 wonderful sons...I am missing on their lives. I try to enjoy every minute when I am not sick but I am never looking forward to the sick days. There is so much to be learned about migraines. So much to be taught and so little that even doctors do not know.

Thanks for sharing and helping us share too.

AMJ

Thank you so much for sharing your illness thoughts, feelings, and symptoms.  My heart goes out to you and your family and friends.  I live with migraine disease as well and everytime I hear of someone with the same difficulties that I live with daily I realize that I am not alone.

God Bless,

Mrsjlo

Thanks for the great list.  About people who say it's great to stay home all day.  They probably don't enjoy their life very much and are just projecting on you.  Can you imagine saying that if you had a fulfilling career?

The hardest thing for me - when I do get to do normal things like go out to dinner or yardwork, I'm paranoid that people think I'm lying about my migraines and disability, because I can do something productive.

I love your new profile picture - very pretty.  New hair color?

Have you ever been checked for another invisible illness:  Fibromyalgia . Some of the things listed in your "meme" rang familiar bells for me as i have both migraine disease and fibromyalgia.  If your doctor doesn't know too much about it, ask him to refer you to a rheumatologist.  I know.... just what you need... another doctor!  good luck

wow that was powerful.  I felt almost every one of those at one time or another and I am so grateful that you put them into words. I am in retail and people say to me all the time, "how can you you be in pain you are smiling or you look fine I am sure it went away. You said what???? I think to myself you have no clue and Thank the Good Lord that you don't know what or how much I suffer.  I am thankful for this forum to help validate or disease we live with....

I agree that it so difficult to live with "hidden illnesses." I went from enjoying a career in teaching to being on disability retirement in 2 years. My next to last year teaching I was forced to work  a trailer so full of mold, mildew, rodent visitation and roaches that no one could stand to be in it. I lost count of how many cans of Lysol I used on it! I went from having maybe one or at the most 2 not severe migraines a year to having chronic, horrible migraines on a regular basis. Not only that, I developed Fibromyalgia, Trigeminal Neuralgia - which is the most painful disease that you can imagine -  worsened insomnia and much worsened asthma. I have no energy anymore and although I have not been in that environment in 5 years the ailments that came with it only became worse, not better. I look great, however and people have no idea how I suffer and that it takes 4 different prescription medications just to get me to sleep and to stay asleep. My life will never be the same. I take 20 prescription medications now.

To add to your list are the people who get headaches and bounce right back with over the counter med. comparing their pain to your own claiming it was just as bad when they have kwow real idea what some people experience. I know if they could feel the pain along with the muliple other things I feel when I have a migraine they would quickly learn not to judge others to themself. I suffer 3 to 6 attacks a month and others who do not experience this just don't get it. I love to live life. Its not a sympathy or excuse thing. People can really hurt your feelings.

Well said Nancy, so many people have to deal with constant pain, few answers and little understanding.

Educating people is of the utmost importance and anyone who deals with migraines and chronic pains should thank you from the bottom of their hearts for getting word out and helping us deal with the frustrations that come hand in hand with migraines.

Keep up the good work, it is very much needed and so appreciated.

Hope your having a good day!

Donna

Good to know these things about you, Nancy - I love your #12 response! And I've been meaning to say congrats on your SS outcome since you wrote about that. Hugs.

Hello Nancy,

You helped me when I was first diagnosed with migraine disease. I will never forget your kindness and helpfulness. I wish you well. thanks you so very much.

Debra Comstock

Dear Nancy,

Thank you for sharing your list. It made me cry because I can so relate to everything you said. Nobody likes to be invisible and everyone needs to be heard and understood.

Sometimes just that is enough to get through another day of pain. Having an invisible illness has made me a more compassionate person.