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

I Didn't See This One Coming

Weather changes. Increased pain levels.

A storm front came through last night.
Normally, I keep an eye on the weather and do whatever I can to reduce my controllable migraine triggers, so that a weather change won't take me out.

I didn't see last night's coming.

I had trouble getting to sleep last night. But, that's nothing new.
I had an increase in pain last night. Again, nothing new.
I had a few prodrome symptoms, but they seemed minor and I didn't heed their warning.
About an hour or so after I finally fell asleep, I woke to booming thunder and pain.

Even though the temperature drop and storms have long since passed, the throbbing pain, fatigue, aching, nausea, brain fog, vertigo... they all remain.

I didn't see this one coming.

Holiday Update & Triggers

Well, I've clearly not kept up with this month's blogging challenge. :-/ I am trying to get several posts finished up, so I can publish them here soon - it's just taking me longer to do anything right now.

I've been dealing with some migraine triggers - some controllable (time with family), some not (weather), and some in-between (sleep). I think I did well avoiding food / drink triggers, even over the holidays.

Weather - The weather has been a crazy roller coaster, and the frequent temperature drops have been difficult for my head pain.

Sleep - I've been having a different kind of struggle with sleep lately. Sometimes I wake up early and can't get back to sleep, and sometimes I sleep into the afternoon. Sometimes I'm up late, and sometimes I can hardly make it through the evening awake. This past weekend, for example, I slept a lot. Sunday, I was only awake for about 8 of the 24 hours, and I still felt so tired.

Family - No doubt, I've pushed myself quite a lot over the past few weeks, and I've been paying the price for doing so. But, I'm grateful for getting to visit with my sister (who was in town for a week), and my family (immediate and extended).

I've been trying my best to stay in the present moment, and to enjoy and be grateful for the time I have been able to spend time with loved ones.

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

Migraine Awareness Month Blogging Challenge #4: June Is Bustin' Out All Over!

The best tips I have to offer others for having some summer fun despite Migraines are:

• Wear dark sunglasses and a hat
• Stay hydrated - water, water, water
• Keep snacks on-hand - keep your blood sugar level by snacking throughout the day
• Stay in the shade as much as possible (and/or spend time in air conditioning)
• Know your limits and listen to your body - if you start feeling dizzy and/or pain increases, take these signs seriously and immediately take action (remove self from situation, drink water, eat a snack, sit or lie down, etc)
• Pace yourself and plan rest breaks
• Always have your medication with you (for pain relief, anti-nausea, etc)
• Be mindful of the fragrance found in many sunscreen products
• Be careful not to get overheated, as this can worsen your migraine pain
• Have a "wing man" that knows about your migraines and can help make sure you drink enough water and will help you get out of a situation that has become "too much" for you
• Remember that you can enjoy time with friends and family, if you plan ahead and arm yourself with some needed items

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #3: Just Shoot Me Now!

Today's prompt is to discuss my worst Migraine trigger(s).

Discovering one's migraine triggers can be very difficult, especially since they build on one another. So, something may not normally trigger a Migraine, but if I'm also dealing with a lot of stress and a weather change, even the smallest thing may be enough to trigger a big one.

Weather is a pretty big trigger of mine. It's somewhat inconsistent, but I almost always have difficulty when the temperature drops 10+ degrees. It's frustrating because I live in Texas, where the weather is a roller coaster. And, there's not really anything I can do to prevent it from happening. I just try to make sure that I have my migraine meds ready for the day before or the day of the weather change, and I plan on taking things easy for a few days around a big weather change.

Here's an example from last month (May 2012):

6 OBSERVED Hi  91.0° Lo  72.0° Precip (in) 0

7 OBSERVED Hi  89.0° Lo  66.0° Precip (in) 0

8 OBSERVED Hi  72.0° Lo  65.0° Precip (in) 0

9 OBSERVED Hi  83.0° Lo  60.0° Precip (in) 0

10 OBSERVED Hi  82.0° Lo  57.0° Precip (in) 0.22

11 OBSERVED Hi  75.0° Lo  60.0° Precip (in) 0.53

12 OBSERVED Hi  71.0° Lo  62.0° Precip (in) 0.01

I had increased migraine pain on the 8th (after the temperature dropped from a high of 89 to a high of 72). I didn't have a problem (in fact, some of the "better" days of last month) from the 9th through 12th, when the temperature stepped or tapered down.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Giving Myself Props

Today, I have to give myself some props... I took advantage of the beautiful weather we had today (it was in the mid-60s today... tomorrow is only supposed to be in the mid-40s), and took myself for a walk. Now, some may not understand the magnitude of this feat, but I'm proud of myself. Not only have I been struggling to find the motivation to "get moving," but I also haven't been feeling well enough to do much. To be fair, the sun was brutal and I'm still not doing very well. But, I did it!!!

I just have to figure out how to get some sort of exercise into my routine... I haven't figured that out yet, but I took a good step forward today.

The Weather

www.WeatherHeadaches.com

I didn't particularly care for today's prompt, so I'm going to write about something else. I've been wondering all day what to write about, but I haven't had any luck (due to migraine-brain). So, when at a loss for words, what better to talk about than... the weather.

Our temperature has dropped almost 30º in the last few hours (and the winds have increased, gusting to around 40mph). I live in Texas, so I expect the craziest weather patterns... It's a roller coaster! Starting in mid-October (10/17-18), each week has delivered a cool front, dropping our temperatures at least 20º in a few hours. The temperatures go back up, and then a big drop again.

Unfortunately, my health seems to follow a similar pattern as Texas weather... drastic ups and downs. I'm seeing a pattern emerge with some of my migraines, when the weather changes so quickly. I love Texas, and I love fall so much... but they're both torturous. Unfortunately, there's no magic bubble that I can surround myself in to protect myself from the changes in weather.

This post was written as part of the National Health Blog Posting Month (NHBPM).

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.