30 Things About My Invisible Illness You May Not Know

For the last two years, I've written about 30 Things About My Invisible Illness You May Not Know (2010, 2011). Some of my answers are the same or similar. But, I think it can be good to review how you've answered these questions in the past, so you can see where you were and how far you've come.


1. The illness(es) I live with is: Chronic post-traumatic headache/migraine (intractable, with and without aura), anxiety, depression
2. I was diagnosed with it in the year: Chronic migraines - 2008 (after a car accident). The others were diagnosed around 2002.
3. But I had symptoms since: dealt with headaches (and some migraines), anxiety, and depression since (at least) my teenage years.
4. The biggest adjustment I've had to make is: not always being able to take care of myself / depending on other people so much.
5. Most people assume: that nothing is wrong with me and/or that I can't hurt as much or often as I do.
6. The hardest part about mornings are: getting up without feeling rested, and  not knowing how much pain the day will bring.
7. My favorite medical TV show is: House, CSI
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: getting to sleep, especially when the pain is bad.
10. Each day I take __ pills & vitamins: I plead the fifth
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic
12. If I had to choose between an invisible illness or visible I would choose: I'm not sure. At least with an invisible illness, I don't always have people looking at me strangely or asking me what's wrong/what happened.
13. Regarding working and career: I have been unable to work since the accident in 2008. I tried to return to graduate school for a year, but ended up taking a leave of absence and then made the difficult decision not to return. Since then, working and/or school hasn't even been an option.
14. People would be surprised to know: I am in pain (often severe) every single day... all day, every day.
15. The hardest thing to accept about my new reality has been: that I have changed, and things will never be the same.
16. Something I never thought I could do with my illness that I did was: plan the wedding of my dreams
17. The commercials about my illness: are very misleading as to what migraine really is and how debilitating it can be. The one about chronic migraine, where the lady is laying on the couch and everything is happening around / without her, is a bit more realistic.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to actively participate in life.
19. It was really hard to have to give up: who I was before the accident... I still haven't completely let go of that yet.
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: have no idea what to do with myself (assuming "normal" is feeling "good," not what my "normal" has become)! I don't even know what life without pain is anymore.
22. My illness has taught me: to recognize the strength that I DO have. It is teaching me to TRUST God more... but it is definitely a long and difficult process.
23. Want to know a secret? One thing people say that gets under my skin is: Migraines are just bad headaches; take some pills and keep going / move on, it can't be that bad.
24. But I love it when people: Show that they care. Even just little things like: being aware of how bright a room is, asking if the TV/radio is too loud, rubbing my neck/shoulders/head, treating me like a person rather than the disease/illness, being considerate at a restaurant by allowing me to sit facing away from windows (so the glare shining off of cars doesn't worsen my pain)
25. My favorite motto, scripture, quote that gets me through tough times is:

• "Be still, and know that I am God" (Psalm 46:10)
• "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4)
• "You will seek me and find me when you seek me with your whole heart" (Jeremiah 29:13)
• "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6)

26. When someone is diagnosed I'd like to tell them: keep yourself informed - research things online, ask your doctor questions, do your best to understand and articulate your experience with your disease/illness. Don't feel like you're alone - join blogging, church, or other support group(s) to help you through the difficult times that you will go through. Be ready for a roller coaster ride of ups and downs.
27. Something that has surprised me about living with an illness is: how strong, yet vulnerable, I can be. Everything I do has to be a conscious decision to use my energy for that specific thing (even basic things, like taking a shower).
28. The nicest thing someone did for me when I wasn't feeling well was: take care of me... When I have a bad migraine, my husband does everything he can to take care of me (feeds me, makes sure I take my medicine, massage my head/neck/shoulders/back/feet [if I can handle being touched], make sure I'm in a dark room and am as comfortable as I can be, and anything else that I need).
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out and get more awareness, research, and understanding out into the public view about invisible illnesses - they are real and often difficult to bear.
30. The fact that you read this list makes me feel: heard/validated, and hopefully a bit better understood. It gives me hope that invisible illnesses can be better understood, if only people will listen.

Suicide Prevention

This week (September 9-15, 2012) is the 38th Annual National Suicide Prevention Week. This coincides with Pain Awareness Month. National Suicide Prevention Week Activities can be found: National Suicide Prevention Lifeline and American Association of Suicidology.

September 10th (of each year) is World Suicide Prevention Day.

More information about suicide prevention can be found:
- You Matter, Let Us Help You Through
- American Association of Suicidology
- National Suicide Prevention Lifeline
- World Health Organization

If you, or someone you know, is in suicidal crisis or emotional distress, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

Invisible Illness, Visible Hope

September 10-16, 2012 is Invisible Illness Week. This year's campaign is "Invisible illness? Share your visible hope." There are some great resources on the website - bloggers will be blogging and sharing images about living with invisible illness, and there will be seminars throughout the week.

Stages of Grief: Depression

I think I've written about the stages of grief before, so I'll just do a quick overview. Elizabeth Kubler-Ross put forth a model of how we work through and grieve a loss.

The five stages of grief are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These stages are not always all felt by someone experiencing a loss, and they don't always happen in chronological order. You can move between them, and even go through some multiple times.

People living with chronic illness often continue through these different emotions, as the pain continues, there are changes in one's limitations, and so forth. Even if someone reaches a place of acceptance, they can fall back to the other stages. It can feel like there are waves of acceptance. But, I'm stuck in a dip / valley, and I'm not sure how I got here or how to get out. I didn't even realize that I had come to some sort of peace with things... until I no longer had that level of acceptance (hindsight's 20/20, I guess).

I'm finding myself in the depression part of the model. I'm trying hard not to sink into a deep depression, but I know depression well enough to know that I'm there... just trying not to slide further into the darkness of depression. I need to reach out to a therapist, but it's difficult to do. I have an accountability partner, which will hopefully help me get the help I need. But, it's a huge step that I even am writing this out.

Depression isn't something that you can really articulate. I feel somehow disconnected (dissociation) from God, myself, and others. I don't find joy in some of my hobbies. I'm trying to go through the motions that I know I should take, but I really just don't care. I just feel unmotivated and STUCK.

It doesn't help that I also deal with anxiety and panic attacks, which have both been worsening. I sometimes feel weird and need to sit down, but then I need to stand and/or move around... so, I'll just sit, stand, sit, stand, and so on. Meanwhile, my heart feels like it's about to beat out of my chest. I take my blood pressure and pulse, and they're normal... NORMAL?! How can they be normal, when I clearly know that something's wrong?!

These feelings of depression and worsening of anxiety didn't come on quickly (it's been a build up over months), so I can't expect them to just go away. I just need to find the strength and courage to reach out for help and start climbing out of the pit. I'm NOT done fighting yet!

Lessons: Finding Joy

I've come so far in being able to feel true happiness for others and the things that are happening in their lives, but sometimes I find it so very difficult. It makes me feel guilty, and I hate being unable to share in their joy.

Since my accident, I've struggled with feeling like everyone else is moving forward, while I just seem to stay in place... stagnant. Sometimes, everything seems to be happening around me, while I remain on the sidelines. A good friend of mine described it as being on a treadmill - constantly walking, but never really getting anywhere.

I love that people are doing well. I think the world would be a horribly miserable place, if everyone was living in chronic pain. I also love being able to share in other people's lives, and I want people to be able to tell me anything, not having to "walk on eggshells" with me. But, it's sometimes heart-wrenching. When people talk to me about their hopes, dreams, goals, and achievements, it can be hard for me... especially if these things are similar to what my own hopes, dreams, and goals have been / are.

"Consider it pure joy, my brothers and sisters,
whenever you face trials of many kinds,
because you know that the testing of your faith
produces perseverance.
Let perseverance finish its work so that you may be
mature and complete, not lacking anything" (James 1:2-4)

I struggle with jealousy of people's lives because of what they're able to do that I can't. There are some things that I simply can no longer do. I'm coming to peace with some of the limitations that I have (not in a roll-over-and-let-the-illness-win way, but just accepting that there are limitations and trying to live the best life I can despite them). But, I haven't formed any hopes and dreams for my future with this disease. I don't know what's in my future, much less how to get there. So, seeing others move into areas that I have a passion for (and used to be very prepared to do) can be hard to swallow sometimes.

The struggle, guilt, and jealousy may not always be so strong as to bring me sadness; but I think they're always there, lurking in the background. I don't want to feel these things, especially not so strongly. I truly am grateful for all that I have. But, sometimes I just want to scream "WHY?!" Why does it seem that no matter what I do, there's no reprieve? I just feel so weary and worn down from the constant battle.

Sharing About Migraine

I try my best to be very open about my life with migraine disease... at least here on my blog.

I open up to those loved ones that I trust 100%, but most of my conversation about how I'm doing with migraine disease are pretty superficial. I try to pay close attention, and if someone is asking questions and seems truly interested in learning more about my experiences and/or about migraine disease, I become an open book. I've learned so much through all of this (and I'm still learning), and I'm happy to share that with people that really want to know more.

I've always been able to open up more through my writing, but it's been a BIG step to put it out there and allow others into my world. Since I started this blog two years ago, I've been greatly blessed with a caring and supportive audience. Thanks to the fact that I've been met here with open arms, it's been much easier to allow myself to be more vulnerable than I would normally allow myself to be to others. And, it's so freeing!

I can't tell you how good it feels to be able to share my journey, and it's a bonus that my words and journey have helped others along the way. My faith gives me hope of better days, regardless of whether or not that includes chronic pain. It fills me up, and I can't help but share with others. Of course, I still struggle. But, I know that my God is watching over and working through me. It is only through Him that my words bring hope to others.

I Hope...
I hope for love, joy and laughter.
I hope we'll have more than we'll ever need.
I hope we'll have more happy ever afters.
I hope we can all live more fearlessly and we can lose all the pain & misery.
I hope, I hope.