Just Keep Swimming...

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Brittney, at The Road I'm On, is hosting the next edition of the PFAM blog carnival:  "What do you do when something you thought you conquered comes back? How do you deal with the change, accept that what you thought was gone for good isn't, and get back to the positive side of life?"

This topic couldn't have come at a better time because I'm currently dealing with this in my life.

I know that I'm going to struggle, at least to some extent, with my illness for the rest of my life (I'm not sure I've fully accepted and embraced this, but I know it). I'm hoping to be able to get things under as much control as possible, so that I can live as close to a 'normal' life as possible.

Now, I can't say that my life was in any way 'normal.' But, I felt like I was on the right track. My husband and I had moved back to Texas (near our families... and doctors). I was starting to be able to do a little bit more around the apartment, and spend a bit more time with my family (though still definitely much less than 'normal'). And, then, everything tumbled down...

Things have been really rough for me over the last few weeks. It's been a pretty big set-back, but I'm really trying to just remember that things will get better. I've kinda gotten used to the 'one step forward, two steps backward' process that tends to be prevalent in chronic illness. It's difficult, but I have to be very deliberate in my thinking, in order to remind myself that things will get better.

I think that part of the challenge is that a false sense of stability forms, when someone that is chronically ill experiences even a short amount of time functioning at a higher level (even if it's only minimally higher). Having even the smallest taste of 'normal' can trick your mind into thinking that things have changed permanently. But, having a chronic illness doesn't work like that. There will continually be ups and downs. You just have to learn to cherish and savor the ups, and trudge through and survive the downs. Much easier said than done... but it's an important thing to work towards. So, when life gets you down...  just keep swimming...

by midnightheartache

NHF Regional Conference - Part I

"The National Headache Foundation (NHF) exists to enhance the healthcare of headache sufferers. It is a source of help to sufferers' families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease" (NHF Mission Statement)

"The National Headache Foundation will be the premier educational and informational resource for headache sufferers, their families, physicians, allied healthcare professionals and health policy decision makers. The NHF will advocate for the headache sufferers. The organization will employ the most effective means to disseminate information and knowledge to headache sufferers and non-sufferers" (NHF Vision Statement)

My husband and I attended the NHF Regional Conference, Bridging the Gap Between Patient & Clinician, yesterday in Dallas, TX. So, I'd like to pass along some of the things we learned at the conference.

Serene Branson was the keynote speaker. She shared about her on-air migraine attack that happened in February. She has partnered with the NHF to help educate others about migraine.

There were several doctors there that spoke about related topics. Please join me over the next few days, as I share some of what each of them covered (it may not be new information, but it's always good to refresh and return to the basics).

30 Things About My Invisible Illness You May Not Know

Last year, I wrote about 30 Things About My Invisible Illness You May Not Know. I'm completing it again this year, for Invisible Illness Week. 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 I live with is: Chronic post-traumatic headache/migraine (intractable, with aura)
2. I was diagnosed with it in the year: 2008 - after a car accident
3. But I had symptoms since: some headaches throughout 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. And, giving up my perfectionist tendencies and accept "good enough" because that's all I am often able to do.
5. Most people assume: that nothing is wrong with me / that I'm fine
6. The hardest part about mornings are: getting up, not knowing how much pain the day will bring
7. My favorite medical TV show is: House, CSI (Miami, New York)
8. A gadget I couldn’t live without is: my computer, and cell phone (especially my calendar)
9. The hardest part about nights are: getting to and staying asleep. I often wake up because of the pain
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.
14. People would be surprised to know: I am in pain (often severe) every single day
15. The hardest thing to accept about my new reality has been: that I have changed and that I have limitations - I can't "do it all" anymore.
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.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to live life without having to really think about the consequences of everything I eat, do, etc...
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 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 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.
27. Something that has surprised me about living with an illness is: how strong I can be, and how many people misunderstand invisible illnesses so much that even their well-intentioned words and actions can be hurtful. Also, how much so many of us take for granted the freedom of just doing/being. Before my accident, I could choose what to do, without having to seriously consider each little thing as being a potential source of increased pain. Now, 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, 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 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 make 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.

Hottest Summer

Okay, so I know I'm kinda a freak... but I'm so excited that we officially set a new record for most number of triple-digit heat days in a year (today marked day 70, and we're supposed to make it near 100 degrees tomorrow, so we could add another day for the year - the record was 69 days, set back in 1980). We missed the record for the number of consecutive triple-digit heat days by only two days. Today, we also shattered the high temperature that was set back in 1965 (100 degrees) - we reached 107 degrees (which is also the record for the hottest temperature post-Labor Day).

Let me be clear. I don't love the horrendous heat-wave that's battered Texas this year. BUT, if we're going to suffer through such a hot summer and be so close to breaking record(s), then we might as well go all out! Luckily, relief from the heat is in the near future. We're supposed to get a cool front Thursday, which will drop our highs into the 80s. I'm definitely ready for some cooler weather (but I'm glad that we broke some records)! I'm a bit concerned, though because the relief from the heat includes chances of storms. We desperately need rain (and an end to this drought), but storms are rough on my migraines. I'm bracing for a bumpy ride.

Invisible Illness Week

This week is Invisible Illness Week. The these this year is "Deep Breath, Start Fresh."

I participated last year with a post titled, 30 Things About My Invisible Illness That You May Not Know.

I hope to feel more up to writing in the next few days. Until then, feel free to check out the Invisible Illness Week website.

Building Resiliency

The theme for the September 2011 Headache & Migraine Disease Blog Carnival is: "Building Resiliency: How do you bounce back when life kicks you in the chin? What can you share with fellow migraine & headache patients about how to build their coping skills to better handle unexpected, tough situations?"

Like the willow tree, people thrive if they have a strong, healthy root system.  A healthy body, sound mind, and a solid support system provide resiliency to weather storms and remain strong.

Resiliency refers to one's ability to quickly recover (or "bounce back") from change or misfortune. I believe that it involves the ability to learn from life's lessons, allowing you to cope with (and grow from) your encounters with adversity. This means viewing troubles as being comprised of both risk and opportunity.

I first read the call for submissions for this blog carnival before I got hit with a horrible streak of painful days (that still hasn't dissipated - so, please forgive me, if this post seems choppy or incomprehensible). That being said, it's a good idea to keep a written account of some coping skills that you've used in the past (or that have been recommended to you by others) because it can be hard to remember these coping skills, in the middle of tough situations.

Try not to freak-out:  First, I try to keep myself from freaking out. I live my life day-in and day-out with the ever-present possibility of a full-on pain flare-up. So, when the pain worsens, you never know how bad it's going to be... this time (even when pain is less severe, there's the fear of the next time the pain will flare).

Be mindful:  I always have to be very mindful of what I do, but especially when times are tough. I have to take even more special care to do even the most essential activities (such as eat and sleep) well. If I don't take care of these basic needs, it'll only worsen the tough situation I'm facing.

Be patient:  I have to try to be patient, especially with myself. I'm absolutely horrible at this! I don't like having to take breaks, and I haven't reached a point that I've completely accepted the limitations that I have (though I have gotten better with these). It's hard to tolerate and accept myself the way I am now, especially on those pain-crazed days. But, it's important to at least try to be patient and tolerant with yourself, and with others.


Reach out:  Reach out to others for support. This can be a very difficult step for me. When I'm in the midst of a horrible bout of pain, it can be extremely hard to see anything beyond the pain. Just as it's difficult to reach out when depression hits, it can be hard to reach out in the midst of pain (especially chronic pain). My resources to reach out to include: family, online support group, friends, or even a professional.


Keep the faith:  Through everything, I try to hold on to my faith, and find hope in the promises our Lord has given us. I try to focus more of my attention to prayer... it may be difficult sometimes, but it helps me cope. I have many songs and Scripture verses that help me through difficult times and remind me that I'm never alone, even in the toughest of times.

"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him" ~ James 1:12