Headache on the Hill: Behind the Scenes

As I began writing about my Headache on the Hill 2020 experience, I found a post that was written but never posted from last year's event. The following post is from 2019, though much of it is timeless.

Photo by Ian Schneider on Unsplash

In writing about my experience and the asks of Headache on the Hill (HOH) 2019, I realized that there's another side that needs to be shared.

Every person that went through the process to participate in HOH has their own story of the event. Some people weren't able to make the trip because of health, financial, or other reasons. Some pushed to make the trip, but were then unable to attend training and/or their meetings on the Hill because of health. Some pushed to participate, and then crashed hard afterward.

Headache diseases can be unpredictable. And, everything that participating in a lobbying event like HOH entails adds up and can be difficult to do while living with the uncertainty of chronic health conditions.

Sometimes you can push through, and sometimes you can't. There is no shame in that. Oh! But, I know that those unable to attend their meetings were overwhelmed by enormous emotions.

Traveling alone

I haven't traveled much alone, since I became chronic after my car accident in 2008. My husband and I have traveled, but my only solo travel has been to visit and stay with family. Attending HOH was the first non-family related travel that I ventured out on my own. I was both excited for the independence and anxious about managing on my own. Knowing that I had friends also attending HOH helped put my mind at ease.

The day before the HOH training was a travel day for me. I flew across the country alone. Time in a plane is hard on the body, and I was hurting badly, when I arrived in Washington, D.C. I made it to the hotel, checked in, and collapsed onto my bed. A friend of mine invited me to dinner and encouraged me to come, despite my exhaustion and pain. I appreciated being around people that get it, and I know that my body needed an actual meal after a day of snacking. I made it back to my room after dinner, but I was completely spent. The weather outside was worsening, and my head and body pain mirrored that.

Reaching out for support

I reached out to my sister, in tears. The exchange of messages revealed the spiral that pain often takes me on.

"When I hurt, my brain catastrophizes. I'm trying to not be overcome with thoughts about not being prepared tomorrow, should I take meds today, if I take today I can't take more tomorrow, etc... It's just a spiral I go through. It's hard."

My sister doesn't experience migraine herself. She has a truly beautiful heart, though, and has taken note of things that I've mentioned help me in the past. She recommended heat... all I had were hand warmers, but she encouraged me to use them to try to help manage the pain (specifically my neck pain).

One thing that I appreciated was that she made a couple simple recommendations (heat and ice), which can sometimes slip my mind. She acknowledged what she wasn't equipped to guide me on. Through it all, she offered me what I needed most... herself. Knowledge that I wasn't alone. Prayers being sent up on my behalf. Reminders that my my painful groans are wordless prayers that reach our Father, when we cannot find the words. Sharing a beautiful song to speak truth to my heart in a way that it could hear it. The song she sent on that night: Fear is a Liar by Zach Williams.

The person that was supposed to be my roommate wasn't able to make it because of a status migraine, but she did her best to try to help from afar... even going so far as to try to get some supplies delivered to me to help me through the attack.

I ended up treating the migraine attack, and made it through the night. My mind and body felt the effects of the battle that had raged on the previous day, but I was able to attend the training day. After training, I gave my body rest and quiet.

The day we went to the Hill for our meetings, one of the people in my group was having a bad migraine attack. I offered support in the ways that I was able to, and checked up on him throughout the day. We shared that he was missing the day's meetings due to a migraine attack, which highlighted the impact of this disease.

I've observed, heard others' stories, and experienced first-hand, the love and support that this community has among its members. There is an often unspoken understanding that we all experience pain and other symptoms, allowing for deeper connections and support in ways that can feel like home. There is such great power and hope in knowing that we're not alone.

“Give your weakness to one who helps.” - Rumi

Grateful for Being Able to Drive Today

It's been a rocky week. Up one day, down hard the next, repeat. I hope that doesn't happen and wreck my day tomorrow, but I'll take things moment by moment.

For now, I'm grateful for my husband being home from his work trip, and for the things that I was able to do / accomplish. 

I drove more today than I have in almost a year! I went shopping a little today, on my own. It's amazing how independent I felt to be able to drive, take care of things at the pharmacy, and browse / shop... all on my own! I looked back at a previous post I wrote about a similar experience several years ago, Update: Driving Myself (3/25/13).

I was on the phone a lot today, which I don't particularly like... especially when a lot of it was dealing with insurance companies that can't quite interpret the verbiage of my coverage with them. But, I was able to talk with a friend today, which was wonderful! I hope to be able to talk to another dear friend tomorrow. 

My heart is full of gratitude for the little things that can sometimes feel so big!

(In)dependence

As I was writing a post (Evolution: How Being a Patient Has Changed Me) for the National Health Blog Posting Month (NHBPM) the other day, I was reminded of a blog post that I started writing almost 2.5 years ago! So, here's something that I wrote the end of June 2011.

I previously wrote a blog post, Frustration: Loss of Independence & Lack of Compassion, that I'd like to expand upon.

As a person with chronic pain, I'm having to learn to live with limitations that I never had before my accident. The constant, debilitating pain has definitely challenged my autonomy and self-reliance.

Before my car accident, I was pretty independent and autonomous. I loved having my friends and family to back me up and/or help when I needed it, but I also loved being able to take care of myself.

Since my car accident, however, things have been much different. Suddenly, I had to try to learn to depend on others because I was unable to take care of myself. I've never been good at letting others take care of me... which was fine... until I actually had/needed to do it.

I don't like depending on others. But, I think I've gotten better at it... at least better than I was before the accident.

I often cannot make plans to do something. Believe me, I used to be queen of making plans! Making to-do lists used to be enjoyable. Now, it's necessary. If I don't write it down... I'll probably forget it.

I have to see how I'm feeling the day-of an event, which is difficult (physically and emotionally). Then, I have to think several steps ahead about the situation I'll be in... sitting, standing, walking, driving, sounds, lights, crowds, etc... it's overwhelming just thinking about, so it's sometimes easier to just stay home.

Even on short outings, I have to be prepared for a migraine attack, so I have to carry "resources" with me (such as: snack/food, drink, meds, remote for my neurostimulator). It may seem like I'm packing enough stuff for a weekend trip, but I need to have some things on hand... just in case. This is something that many people simply don't understand. I can't just run out the door... I have to be able to gather my things, first.

It sometimes takes me a week from when I need to go to the grocery store, to when I actually go (and that's because my husband goes with me... it'd probably be even longer, if I was on my own). I can drive my car... when I have enough energy and I don't have a migraine. I can go shopping... when I feel up to it. It's so frustrating!

I have become so dependent on my husband. He is supportive on every level... he's such a blessing! He knows how to call my bluff, when I say that I'm alright but I'm really tired/depleted and/or hurting. He helps support me, when I have trouble balancing and walking on my own. It has taken me a long time to get past the "I don't need your help walking," but now I'm mostly just grateful that he's there to be able to assist me. He drives me to doctor appointments, and short shopping trips (mostly for groceries). He takes care of me. ...I'm finally having at least small windows of opportunity that allow me to help a bit more than I used to. :-)

I'm thankful that my mind is still at least fighting to remain independent. I have cognitive difficulties, so it may take me a lot longer to process things... but, I enjoy seeing glimpses of ME, and those glimpses usually come via my thoughts.

UPDATE (November 2013):
Reading through what I wrote 2.5 years ago, allows me to see how much I've changed and grown... what things are the same, and what things are different. Many of the limitations I previously wrote about are still limitations that I deal with on a daily basis. However, I think I've reached a level of acceptance. I'm not exactly sure how to explain it, but I wanted to include a short note / update at the end of this post.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Evolution: How Being a Patient Has Changed Me

Today's topic is "Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?"

There are so many things that come to mind for this topic. I have changed a lot, since I started living with chronic debilitating pain 5-years ago. I've written quite a lot on the topic of change... here's one that jumps out in my mind:  Change: Life Since the Accident (Jan 6).

Slowing down
I've learned (and am still learning) to slow down. It hasn't been easy, as I was always on the go, before my accident. I planned nearly every hour of my day... man, was I a planner! But, that doesn't work for me now. I have to be mindful of my body's limitations in a way that I never did before. Otherwise, my body may just shut down and/or I later pay a very high price. So, I find my life is a much slower pace than most others, but that's what I need.

Living in the present
I'm learning more and more to simply live in the present moment. It's harder for me to do at some times than others, but I'm much better at doing it than I used to... I still have a way to go, though. When I'm having good moments, I do my best to cherish and enjoy them, regardless of how long they last. When I'm having very painful moments, I do my best to tend to my body and turn my focus on God - thanking Him for what I have, asking for His peace through the storm, praying for others who are experiencing any pain, etc.

Depending on others
I grew up to be an independent woman, and I've always taken pride in that. So, being thrust into a position of truly needing to depend on others was a huge (undesired) lesson in humility, among other things. I still have difficulty with asking for help, but I'm slowly becoming more comfortable with asking for and accepting assistance from others. I think it's an important lesson for everyone - not to depend on others for everything, but to be able to ask for and accept help when needed.
* There's a blog post that I started almost 2.5 years ago regarding independence / dependence... I think I'll work on finishing and posting that in the next few days. 

Gratitude
I find myself filled with gratitude in a different way than I was before. My list of things I'm grateful for includes even the simplest of things that I used to just take for granted. And, as humbling as that can sometimes be, it keeps me focused on the things, big and small, that God has blessed me with.

I have changed
I've become more focused on my priorities, stronger in my faith, more outspoken in health matters (especially concerning justice for those with disabilities), more understanding of others, and more forgiving of myself and others.

Goals have changed
My goals have changed. Sometimes I feel like a failure because I don't have my 5- or 10- (and so on) year plan on the tip of my tongue. My goals aren't SMART (specific, measurable, attainable, relevant, time-bound), like I was trained to believe is necessary. Perhaps it is necessary, but I don't feel a specific drive or calling of something to do in my life right now. And, while that sometimes makes me extremely anxious and like something must be wrong with me, I'm doing my best to trust that God has a plan for me.

Overall, even though I don't have SMART goals, I do feel more focused on a clear life purpose: to faithfully follow God, allowing Him to work in and through me wherever I am and however He desires. Now, that's not to say that I don't struggle along the way. I don't have any clue what I'm supposed to be doing with my life, but I'm doing my best to root myself in the One who does know.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Update: Driving Myself (3/25/13)

While the excitement has diminished and I've been dealing with increased pain / decreased independence, I'd like to share something that happened a week and a half ago.

I wrote this on March 25, 2013:

While this may not seem like a very big achievement to some, I know that others will really understand the magnitude.

I've driven myself THREE times in the past week!!! [again, this was a couple weeks ago]

I hadn't driven in ages, but I drove myself to get a massage, go shopping for almost two hours, and to visit with my parents / family (each on separate days).

I'm so proud of myself for doing this. And, I realized that in some ways I kinda miss driving. Of course, there's the feeling more independence thing, which is amazing (even if only for an evening). But, I also enjoy listening to the radio when I drive.

Anyway, I just wanted to share my excitement!

Though the memory of this seems like so long ago, and it may be quite a while before I'm able to do something like this again, I try my best to cherish these opportunities and achievements.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).