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Wednesday, September 18, 2013

30 Things About My Invisible Illness You May Not Know

Last week was Invisible Illness Awareness Week. I participated in a few of the chats, since that was easily done from the sofa, where I spent the majority of my week... but, I mostly missed being more actively involved. The need for awareness marches on, though, so on we go. This year, the campaign was focused on "I choose to __."

I choose to...
...not let my illness define me.
...find joy in the little things.
...try again tomorrow.

For the last three years, I've written about 30 Things About My Invisible Illness You May Not Know (201020112012). 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), anxietydepressioninsomniairritable bowel syndrome
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, depression, insomnia, and irritable bowel syndrome 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, Lie to Me, CSI
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: getting to (and staying) sleep, especially when the pain is bad.
10. Each day I take __ pills & vitamins: I'm not really sure, but actually fewer than I've taken in quite a while.
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic, biofeedback, relaxation
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. I have limitations that I have to live within, or pay the (often very high) price.
16. Something I never thought I could do with my illness that I did was: plan the wedding of my dreams, with the man 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 seemingly 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.

Tuesday, September 17, 2013

Do You Love Me?

I have to be honest. It's been a long time since I've felt... I mean, really felt the spirit move in and through me. But, at this moment, despite the throbbing pain of a migraine that's ramping up and knowing that I'm going to be sidelined for the majority of the day, I feel alive! I feel the spirit churning in me, and pushing to come out. So, I turned on the computer to let the words flow through my fingers.

I have been feeling guilty and have been very hard on myself for a really long time. You see, I haven't been to church in longer than I care to admit - besides a couple visits here and there, it's probably been a few years now. It breaks my heart, as church and my family / church family (my family and I are members of the same church) has always been a constant rock in my life. But, I have a lot of difficulty with many aspects of the church-going experience, so here I am.

I miss it. I miss being surrounded by others that love Christ. I miss the Scripture, the songs, the sermons, the community. I miss feeling His presence.

My church has been streaming podcasts of the weekly sermons for a while now. I started listening to them, when they first started, but I haven't stayed disciplined in listening to them. For whatever reason, I decided to pull one up this morning and listen to it. Where should I start? At the beginning? The most recent? So, I just kinda randomly chose one... it ended up being the sermon from May 5, 2013. Wow!

The sermon speaks to how Jesus Christ came to simplify our lives and our faith. We are called as God's people to live and love simply.

I've been thinking a lot about this idea of living simply, as I definitely do not. I over-complicate and over-analyze my life so much!

We over-complicate life, and Christ came to simplify it. We over-complicate our relationship with God, and Christ wants it more simple. We over-complicate forgiving other people (perhaps most of all, ourselves), loving other people... and it's all really simple. Christ came so that all are forgiven and loved. All we have to do is accept it and offer it to others. Simple. But, simple is not easy. A simple life of faith is not easy.

It's easier to only love and forgive certain people (for example, people that think or believe what we believe), but it's simpler to love and forgive everyone. And, we're called, as God's people, to love and forgive everyone - just as God loves and forgives us, unconditionally. It's not easy to love everyone unconditionally, but it's simpler.

Take, for example, Simon Peter. Simon Peter publicly and blatantly denies knowing Jesus three times (John 18:15-27). In a stark difference from the rules and regulations of the day to cleanse and repent for denying God, Jesus responds by asking a simple question... "Do you love me?" (John 21:15-17).

In order to be made holy and righteous, and be reconnected and back in relation with God, all He asks is, "Do you love me?" The only other thing we're asked to do is to simply go love and forgive others the way we've been loved and forgiven by God.

No matter how much we've messed up, how far we've strayed, what we've done... if we want to be forgiven by God and be in a relationship with God, all we have to do is answer this question:
Do you love Me, and will you go and love other people the way I've loved you?  ~God
Wow! What a huge release of so much guilt, disappointment, and hate that I've held toward myself. There's nothing difficult that I have to do to try to make things right between God and me. I love God, and I do my best to share His love and forgiveness with others. I feel like not being able to make it to church has somehow stifled my relationship with Him, but maybe He's growing me in different ways right now. I do hope to be able to rejoin my church community in weekly worship and service, but I'm trying to find peace in doing what I can right now... growing my relationship with God from where I am, knowing that the Lord of All has the reigns in my life.

All we have to do is accept God's unconditional love and forgiveness in our lives, and then go offer it to other people. That's it. So simple! 

A Life-Affirming Visit

You know those amazing, life-affirming visits with someone (be it a friend or a stranger), where you leave feeling that your soul has been refreshed / renewed?

I had one of those Sunday night. I had a chance to visit with a long-time friend of the family, who I only get to see every four or five years. She happened to be in town for a few days, and I (thankfully) was feeling well enough to visit a bit with her and some of my family.

She and I chatted with one another for a little while, and I feel that we connected in a special way. She shared with me how she saw me before the chronic migraines (very active and busy, an intellectual, etc), and then recognized and allowed me to talk about the difficulties that have come with learning to live life with so much pain and so many limitations. She said she knows I've always been determined and strong, and that she knows I'll do my best to be and live as well as possible.

She shared bits of wisdom that she's learned over a lifetime of experiences... bits of wisdom that seem so simple and basic, but are truly life-changing:
  • Listen carefully to your body.
  • Do what feels right to and for you (call it your gut, instinct, or just a feeling).
  • Be okay / comfortable with the decisions you make.
  • What others say to / about you is about them, not you.
  • Don't spend precious time and energy on wasteful things. 
  • such as, thinking or worrying about... what others say to/about you, expectations of self and others (what you should be doing), what may or may not happen, and other things that are out of our control.
  • There is meaning and purpose in life, even when it doesn't feel like there is.
  • The faith that we gain during times of struggle are priceless.

I'm sure there are other things that'll keep coming to mind, as the words shared between us play in my mind further. There were aspects of this journey that I haven't talked about in quite a long time (like identifying myself with my intellect, and the loss of that when I struggled with and then decided not to continue graduate school). It was interesting for me to see what I've dealt and come to terms with, and what is still a little raw to talk about. I know that this is all a journey, and it was nice to share parts of my journey with this friend.

I feel validated and better understood. I also feel a renewed sense of hope and direction that feels great!

I count myself so blessed to have this person in my life, and that she was willing to spend some time sharing with and really listening to me. My heart is filled with gratitude!