Not Knowing

For me, one of the most difficult aspects of living with chronic pain is simply not knowing. Not knowing when my headache will get worse. Not knowing whether my medications will help this time. Not knowing if I'll be able to attend an event. Not knowing how the pain will affect my life from day to day.

Unfortunately, I don't think that dealing with the uncertainty is going to improve or even get easier with time. Even in "good" times, when my migraines aren't completely out of control, it can be difficult to enjoy myself because there's always that little voice in my mind wondering when things will be bad again... when the next migraine will knock me down.

Right now, I'm trying to face this uncertainty in my life. I've been pacing myself, in order to make it through and actually enjoy the holidays. Besides the weekly migraine due to weather changes, I felt like I was actually doing alright (now that I think about it, though, I'd deal with a couple days of migraine pain, and then have to deal with the migraine "hangover"... just in time to start the prodrome of the next big one). Anyway, I was doing relatively well, but then I had a huge crash late in the day on Thanksgiving.

When this migraine hit, it hit HARD... perhaps some of the worst pain I can remember. But, the pain just kept going... and going... and going. I called my doctor, and he had me take a course of a corticosteroid, but I don't think it really did a whole lot. I took my normal migraine med (a narcotic painkiller) late last week (around day 10 of the migraine), and I was able to get out of the house a very little bit (you know, groceries and visit a little with family). These outings exhausted me, but I was going crazy being stuck inside the apartment.

The pain has eased up some, so it's not constant unbearable pain... but, I've been on a roller coaster ride (just at or below migraine-level... to well-above migraine-level) this past week. The pain would start to get a little better, giving me this (false) sense of hope that the migraine was finally breaking. But, even later that same day, the migraine pain returns full-force, and I wonder if / how long it's going to stay around this time. It's scary.

Each night, I say my prayers and (finally) get to sleep... hoping that the pain will be at a bearable level the following day. And, at least lately, I find myself disappointed, when I wake up to bad pain. It's frustrating and discouraging.

A bit of a tangent... The mind is so fascinating to me. Somehow, it "forgets" some of the most painful things we've encountered in our past. Our memories of bad times sometimes seem muddled, perhaps in an attempt by the mind to protect itself... by graying over the memories of how bad the pain was, how long it lasted, how much it affected us. And, yet, there's enough memory for our minds to worry about when the pain will return, when the pain will dissipate, how it will affect us.

Thanksgiving was over 2 weeks ago, and Christmas is in 2 weeks. I want so badly to be able to enjoy the holidays and spend time with my family. I'm trying to take things easy now, so that hopefully I can better manage my migraine pain through the holidays.

"Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security." - John Allen Paulos

"Uncertainty is the refufe of hope." - Henri Frederic Amiel

"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)

Holiday Wishes

What are you wishing for this holiday season? I've found that living with chronic illness can change what's on your list of holiday wishes. Most of the things I'm wishing for are things that simply cannot be bought (I have some other stuff on my wish list, but I'm going to focus more on the things that cannot be purchased):

DIRECTION. I wish to have more direction in my life. I feel lost in a vicious cycle of pain. I'm not quite sure what I'm supposed to be doing. I don't know what God is calling me to do in the midst of these trials.

HEALTH. I wish to have my health better under control. Ultimately, I'd want my health back... no chronic migraines, no back and neck pain, no stomach problems... But, realistically, I'd just like to find ways to better manage these health issues.

COURAGE. I wish to have the strength and courage to keep going, even when things are bad... such as, when my pain levels are very high and it seems like the pain will never end. I want to have the courage to continually face my trials.

I've been BLESSED with so much already. I have a beyond-wonderful husband and family. I have a roof over my head, food on the table, and clothing on my back. I have a merciful God that loves me unconditionally. What more could I really ask for?!

This post was written for the December 12, 2011 edition of the ChronicBabe Blog Carnival.

Reducing Holiday-Related Migraine Triggers

The theme for the December 2011 Headache & Migraine Disease Blog Carnival is: "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips, and tricks for minimizing triggers while still fully enjoying the holiday season."

I've been wanting to write about holidays and migraines, so this gives me a great opportunity to share and to learn some tips from others. There's a great post that I think approaches this topic so well - Surviving the Holidays: Give yourself the G.I.F.T. of a stress-free holiday - Guilt must go. Importance rules. Family matters. Think ahead.

Since my main challenge is dealing with chronic migraines, I'd like to write about the holiday season... how there are a million different triggers that can present themselves... all in just a matter of weeks... and all wrapped in tinsel and twinkling lights.

First, let's take a look at 3 triggers that we have the ability to manage / control:  food, sleep, and stress.

FOOD
The holidays often involve get-togethers and parties, many of which will have foods / drinks that might be migraine triggers. Sometimes, you simply don't know what ingredients were used to prepare the foods provided at the event. Though there is no universal list of migraine triggers, there are foods / drinks that have been found to be common food triggers.

Tips: Try to keep your eating schedule - eat small meals throughout the day, make sure not to go too long without eating (don't skip meals). Eat around the same time each day, and keep your food portions consistent. Going all day with little to eat and then splurging at an evening dinner can trigger a migraine. And, if you're going to a party or dinner, offer to bring a dish... at least then you know that you'll be able to eat at least one thing there.

SLEEP
Just as holiday events can affect your eating schedule, it can also lead to disruption in one's sleep routine / pattern. We may find ourselves staying up later, sleeping in later, napping, etc...

Tips: Try to keep your sleep pattern - go to bed and get up at the same time each day, and refrain from naps.

STRESS
The holiday season increases stress for everyone, regardless of whether someone has a chronic illness or not. But, for those living with chronic pain, there is stress in: not knowing whether or not you'll be able to keep plans with others, missing out on special events, being around crowds of people, spending precious energy and money on gifts, etc. While stress may not be a migraine trigger, it certainly renders the individual more susceptible to his / her triggers... so, it's important to try to reduce stress levels.

Tips: Begin holiday planning and preparation a month or two in advance. That way, you can get a little done each week, and you'll still be "on schedule," if you end up having some bad days. Set aside time for yourself - take frequent breaks and retreat to a cool, dark, quiet room as you need to. It's also important to monitor how you're feeling, and take care of yourself.

Now, let's take a look at 3 triggers that we have a lower (or no) ability to control:  environment, travel, and weather.

ENVIRONMENT
There are some environmental factors that simply cannot be controlled (see WEATHER, below). But, the holidays introduce another set of environments that we often have very little control over. Stores have fluorescent lights, different smells, a lot of people, etc... Holiday parties / events have smells, noise, lights, foods, drinks, crowds... a lot that we can't really control. Often there is no way to escape these triggers or the migraines that they generate.

Tips: If you're going to a party or dinner at someone else's house, offer to bring a dish. If you know the person well enough, perhaps you can ask them if there's a cool, dark, quiet room that you could escape to, if you need to. You may also ask him / her to not burn candles that may be a trigger for you.

TRAVEL
Traveling to other cities / states to visit with family and friends is common around the holidays, but it can lead to increase in migraines. Holiday travel can disrupt our eating and sleeping habits, and raise our stress-levels.

Tips: The holiday season comes with short tempers / fuses and long lines. Keep in mind that everything will take more time during the holiday season, so pace yourself. If you find yourself traveling during the holidays:
Car travel - stay hydrated, keep your regular sleep and eating schedules, take frequent rest stops to get out and stretch.
Air travel - stay hydrated, keep your regular sleep and eating schedules, and take your headache medicine as a preventive (if air travel is a problem for your migraines).

WEATHER
Changes in weather can also trigger some people's migraines - possible weather change triggers include: changes in temperature, changes in barometric pressure, storm systems, humidity.

Tips: Sometimes, by knowing when there are weather changes coming, you can take your abortive medication and prevent the migraine altogether. Also, by getting or keeping other triggers under control (such as sleep, food, etc...), the weather changes may impact your migraine levels less.

THE PERFECT STORM
The holidays tend to be a perfect storm of triggers: food, sleep, stress, environment, travel, weather, and so on. Even though migraine triggers aren't the same for everyone, the holiday season tends to bring on a multitude of different triggers that can wreak havoc with many Migraineurs.


Tips: Try to control the triggers that you're able to. Determine what's most important for you and your family, and let the other things melt away. Be patient, pace yourself, and go with the flow.

Ultimately, remember that the holidays are not about the parties and the gifts. It's about celebrating the birth of our Lord, with our family and friends. We shouldn't feel guilty, if we can't muster up the energy to meet the expectations we have of the "ideal holiday scene." Living with a chronic illness places limits on what and how much we can do, and we must stop being so hard on ourselves for listening to and taking care of our bodies. Be patient, pace yourself, and go with the flow. 

PFAM Is Now Up

The current PFAM Blog Carnival is up at Bed, Body & Beyond. The topic was: "Why do you write?" And, there was a GREAT response. I haven't quite made it through the 15 blog posts that made up the carnival, but I've enjoyed all the ones that I've read so far. If you wonder why some people write, what keeps people with disabilities writing, etc, take a look at these wonderful stories.

Why I Write

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. Sharon, at Bed, Body & Beyond, is hosting the next edition of the PFAM blog carnival. The topic is: "Why do you write?"

I've always loved writing. When I was a kid, I enjoyed reading and writing... and that love has stayed with me. Writing is part of who I am - it allows me to express myself, it gives me a voice, and it helps me to process information and emotions.

EXPRESSION

Writing offers me a way to express myself, in ways that nothing else can. I've always been one to where a mask / facade, and only reveal to others what I wanted to... which often was very little. I'm still not incredibly comfortable opening up to others, but writing helps. Of course, I also had to get past the initial fear of sharing my writing with others. Besides school papers, work reports, and some select poems I'd written for specific people... I'd very rarely shared my writing with others. So, I had to overcome my fear and give myself permission to both express and share myself through my writing. It's been such a freeing experience to allow myself to be seen, through my words.

A VOICE

Sometimes I feel like others don't hear me. I've never been a loud, "in the spotlight," attention-demanding type of person. It can be quite aggravating because there are times that I have something to say (or times that I actually say it... over and over... and no one hears or listens). Writing allows me to say what I want to say, without interruption. And, the beauty of writing (at least for me), is that it's not essential that others even read it. I enjoy writing, regardless of whether the audience is one or many.

PROCESS

Simply put, writing is how I process things - information, emotions, experiences... life. I don't always know what I'm going to write, I just place my fingers on the keyboard and let the words flow from them. This was incredibly fascinating to me, in college. I'd have to write a paper... I procrastinated and waited until the last minute... but, thoughts were formulating and processing inside my head... and then I just sat down and typed it up (followed by a lot of editing, lol).

Being able to write things out is especially important for me, now, because my mind works differently than it did before my accident. Things don't make sense, I can't find the right words, I forget what I'm talking about, I have trouble focusing and completing thoughts, my memory doesn't work very well, etc... All of these things were completely foreign, and writing has helped ease some of the cognitivie difficulties I've experienced... writing helps me to form complete thoughts and to remember what I've done, how I felt, and so forth.

JOURNALING

I kept a journal through part of college, and I've tried to start a new journal because I really enjoy writing in it... there's just something about putting a pen to paper that I've always enjoyed. But, I wasn't able to write much for a long time after the accident, due to me injuring my right shoulder (typing hurt, too, but I was able to do it more quickly than writing). Since, blogging is essentially journaling online, it was a natural "fall-back" to writing in a journal... and it's been an interesting outcome of my chronic illness.

BLOGGING

I guess, technically, I started a blog (does anyone remember Xanga?) back in college, so that I could keep family and friends updated on my adventures in Europe during my semester abroad. But, I didn't start my Chronic Migraine Warrior blog until a couple months shy of the 2 year anniversary of my car accident. I wanted to write about my thoughts and experiences... and, if it helped someone else, that was just a beautiful bonus. I don't know that I would've started up a blog, if I didn't have a chronic condition / disability.

Before my accident, I didn't really have a need to keep track of how things were going or what was going on because my memory worked just fine. However, that changed with my accident. Suddenly, I was being bombarded by doctors and insurance companies asking me detailed questions about my life with chronic pain. The problem was... I couldn't remember! I had no idea what I had done yesterday... sometimes, I couldn't even remember what I'd done a few minutes before.

So, I utilized my blog as a way of keeping track of some of what was going on and sharing things that I learn through my own journey (about meds, migraines, insurance, etc...), but I also wanted to have a way to help keep family and friends up-to-date. It's a bit ironic, actually. With one of the driving forces being to update family and friends on how I'm doing... there are only a small handful that actually keep up with it at all (and I'm so thankful for you guys!!!). Most have just melted away. Thankfully, I've been blessed to find a community of bloggers that are so supportive, many of who have become dear friends of mine.

WRITING & DISABILITY

Writing has definitely taken on a different meaning, since my chronic migraines began (in October 2008). I (foolishly) thought that being unable to work would give me the opportunity to read and write more... while that's great in theory, it simply isn't the case. Sure, I have the time to read and write, but I don't have the energy (or cognitive ability).

I've heard that a quite a few individuals didn't really begin writing until they were faced with a life with chronic pain. I find it interesting. I've always loved to write, but I really hadn't done much of it, after I started working full-time (out of college). I quickly got pulled into the "rat race"... I sometimes wonder, when or if I would've returned to my passion for writing... or, would my dreams of writing just melted away?

Now, one of the reasons I keep writing is to (try to) keep my sanity. It can feel like I have so many thoughts and ideas inside me, but I can't get them out. It's frustrating, when I'm not able to write for a while (physically, mentally...). I admit, it can be difficult to keep writing, while enduring constant pain, cognitive difficulties, depression/anxiety, and so many other aspects of living with a chronic illness. But, the rewards can be tremendous. As I continue on my own journey, living with chronic pain, I'm learning how to pace myself and take baby steps toward my goals of writing.

By the way, I wrote a post back in April about Why I Write About My Health. It was actually interesting to read it and see what I'd written (of course, it didn't even dawn on me that I'd written it until after I'd already written this lengthy blog post)... So, I apologize for: 1) this being such a long post, and 2) clearly not being as concise and straight-forward as my previous post... Damn you, migraine-brain!

"The role of a writer is not to say what we all can say, but what we are unable to say" - Anaïs Nin

"Be yourself. Above all, let who you are, what you are, what you believe, shine through every sentence you write, every piece you finish" - John Jakes

International Day of People with Disability

Today is International Day of People with Disability. According to the IDPwD website:

International Day of People with Disability (IDPwD) is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being. The day also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.

IDPwD brings together individuals, businesses, community organisations, and governments from every corner of the world to celebrate and acknowledge the contributions, skills and achievements of people with disability.

In 1992, at the conclusion of the United Nations Decade of Disabled Persons (1983-1992), the General Assembly proclaimed 3 December as the International Day of Disabled Persons.

The theme for IDPwD 2011 is "Together for a better world for all: Including persons with disabilities in development."

Approximately 15% of the world's population lives with disabilities. Many people are unaware of the great number of persons living with disabilities worldwide, as well as the challenges they face. To me, IDPwD is a day to educate others. Oftentimes, people without disabilities don't understand the magnitude of the challenges people with disabilities face on a daily basis. We must help share our experiences and educate others, in order to help remove the stigma behind living with disabilities.