Invisible Illness Awareness

In honor of Invisible Illness Awareness week I have answered questions about myself to teach others about what they don’t see.   Please feel free to copy and paste the template to answer the questions yourself.  Pass along my post to help spread awareness.  A lot of people have a lot to learn and this is a quick list of things people may learn.  I think you’ll be surprised who responds and those who suffer in silence.  Please check out their website to see what you can do. Invisible illness

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine
2. I was not diagnosed until years after my first migraine.
3.  I had symptoms since: probably the day I was born or soon there after. I had my first migraine when I was 5 that I remember.
4. The biggest adjustment I’ve had to make is: being prepared for it to hit at any moment, anywhere.
5. Most people assume: that it’s just a headache
6. The hardest part about mornings are: waking up. I have a headache everyday when I wake up and the direction of my pain level dictates my day
7. My favorite medical TV show is: Gray’s Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: going to sleep. I love to sleep to escape the pain but my eyes flutter open from the pain and it takes me a while to fall asleep.
10. Each day I take the least amount of pills that I can & vitamins in order to survive.
11. Regarding alternative treatments I: do as many as possible to hopefully cut back on meds. They help minimally, but I do whatever I can to help myself naturally.
12. If I had to choose between an invisible illness or visible I would choose: no disease. It is actually helpful at times that I can hide my pain but also leaves me vulnerable to judgment. I don’t know how it feels to have a visible disease and I’m sure that just as many problems arise with it.
13. Regarding working and career: I used to be a special education teacher and the stress triggered me into missing many days and was criticized for having my own special needs. I now stay at home with my children which allows me flexibility but no breaks. I literally live, eat, sleep and breathe my children and even if I’m crazy sick, they are still my responsibility.
14. People would be surprised to know: that I am chronically ill. I hide it really well (the best that I can) so my children and friends don’t worry about me.
15. The hardest thing to accept about my new reality has been: it’s not a new reality. I’ve lived with it my entire life but have never gotten used to it. It has changed as often as I have since I was 5 and it is constantly a trial and error to give me some kind of normalcy.
16. Something I never thought I could do with my illness that I did was: go to college. I say this in hindsight because I was nieve in thinking that I would be fine when I left from my family and doctors. I have read how so many people have had to drop out of school and how it affects their education. From hearing others stories I am most greatful that I was able to be educated and enjoy college life at the level that I did.
17. The commercials about my illness: make me roll my eyes and give sarcastic comments.
18. Something I really miss doing since I was diagnosed is: being carefree. I don’t remember a time that I didn’t have migraines and I live each day thinking and dealing with them. To not have to think about my chronic condition would allow me to live much differently.
19. It was really hard to have to give up: drinking, foods, nights out, events etc. I miss out on a lot and even more if I’m not cautious
20. A new hobby I have taken up since my diagnosis is: blogging. I find it meaningful to help others and in return learn about myself and sort through what I’m dealing with.
21. If I could have one day of feeling normal again I would: (see) https://mymigrainelife.wordpress.com/2014/06/02/what-would-you-do-if-your-dream-of-a-pain-and-a-completely-symptom-free-life-came-true/
22. My illness has taught me: that I’m stronger than I think and that giving up is not an option
23. Want to know a secret? One thing people say that gets under my skin is: it can’t be that bad.
24. But I love it when people: say they enjoy my blog. I feel like I’m making a difference with positive feedback.
25. My favorite motto, scripture, quote that gets me through tough times is: live like  you are dying.  I never know when I’ll be locked in my cold dark room and I do not take low pain days for granted.
26. When someone is diagnosed I’d like to tell them: I’m sorry. I’m truly sorry.
27. Something that has surprised me about living with an illness is: how many aspects of my life that it effects.
28. The nicest thing someone did for me when I wasn’t feeling well was: a lot. I am surrounded by love and have an army of people who fight for me. I feel so sorry for people who are unsupported and alone with this already isolating disease.  Love won’t cure me, but it has healed me.
29. I’m involved with Invisible Illness Week because: bringing awareness is important.
30. The fact that you read this list makes me feel: special. There is a lot to read and do and the fact that you read about me is special. Thank you for reading.

Advertisements

14 thoughts on “Invisible Illness Awareness

  1. I’ve been enjoying reading your blog! It’s no shock, as you know, that meeting anyone on even a close playing field is like adding another player to our “team.” The migraine team isn’t something to brag about, but I sure love meeting anyone that shares this with me.

    Like

  2. I have a degree in special ed teaching and I am trying to find a job, but my “special needs” have gotten in the way too… For instance, I was offered a really exciting teaching job, but I ended up turning it down at the last minute because my anxiety and depression flared up so badly. And now I am fine, at least for now, and I wish I had taken the job,,, but it is too late. 😦

    Like

    • Did you read my post “broken wings?” It takes a special person to do what we do/did and being a migraine sufferer with it seems so difficult to find the right fit. I hope you find a great job that fits both you & your students. It’s a tough job & a tough disease but I know you’ll make a difference.

      Like

  3. Thank you, thank you for articulating this so well. This is so similar to my life, except completing college and I was 8 when I had my first migraine. I wish you all the best.

    Like

  4. This is very much my life. At 60, and nearing retirement, I hope the change will have a positive effect, there is always hope! I like the comment about wishing to be “carefree”. Oh, how I wish I could be.

    Like

  5. Thank you for being open and sharing of your journey. I started getting abdominal migraines as a tween but they never could figure out what was wrong with me. Years later after my migraines turned into hemiplegic head ones and was diagnosed, I can put a name to something. Chronic hemiplegic migraines. It not fun and scary most of the time, however if I lived my life out of the next big one I would be a basket case. I can’t do that to my kids (unfortunately my daughter was diagnosed when she was 9 with migraines but controlled). So thank you for documenting your journey showing bravery and pure guts and strength to keep going. Even if it looks like nothing is wrong. 😉

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s