Monday, July 15, 2013

How do you prioritize life?

This is a difficult question for me; one I struggle with everyday.  For over two years I spent my life in my house; fighting to get through each Cluster Attack.  Many times I would feel like a bear hibernating.  The only difference was the bear got to leave his cave when it got warmer; I got to leave mine to go to a doctor's appointment.  While those days were lonely, they were easier in many ways.  When I began to slowly start living my life again despite my Cluster Headaches, it meant that I would have to find a way to step out the door.  I do not currently take any preventative medications, none worked for me.  So I rely on my abortive medications that can leave me lethargic and fuzzy brained; that is when it works at all.  The cherry on the top of this sundae is that I can only use so much of this medication a month.  For a person having 6-8 Cluster Attacks a day (chronically) and Chronic migraines on top of that; my 5 vials of meds do not help 90% percent of the time.  So what I have had to learn to do is plan my life around my priorities.  Meaning: what gets top billing and what can I absolutely skip.  While I would love to put family at the top; it is not possible.  My top billing has to go to doctor appointments.  What I have come to find out is that doctors will FIRE you as a patient if you miss regularly scheduled appointments and rescheduled appointments from the ones you previously cancelled.  So this means I have to have my emergency meds on hand so I can make it to my appointments.
Family definitely comes next.  This is a bit easier to control because my family accepts me for who I am.  So they know that if I am having a bad day and already used my weekly allotted medication, I will either cancel or give my best try to go and not allow the BEAST to take over (it kinda looks like a remake of the HULK when this happens).
Friends tend to get the bottom billing.  And this is a tough one to admit because I have some amazing friends who have stuck by me through all of this.  But I only have so much medication to go around.  And I am still extremely embarrassed to have attacks around others and I avoid it at all costs.  Sometimes that cost is a friendship.  
So until someone finds a better solution I will continue to live my life by the moments I can be a part of.  

Wednesday, July 10, 2013


I have mentioned before how lucky I am to have the family and friends that I have. Throughout the last four years the people in my life have shown overwhelming understanding and support.  Through them here is what I have learned about friendship.....

1.  It's okay to be silent.
Friendship is not always 50-50.  Just like any relationship there will be times when one person in the relationship needs more support than the other.  Sometimes I feel overwhelmed with what is going on in life, but that doesn't mean that I am the only one who is overwhelmed.  It is always important to remember that no one's life is stress or drama free and there are times when everyone needs to vent.  So at times, as a friend, it is important to just be silent.  Let the other person get all of their frustrations out.

2.  No invite is not always an insult.
I have never been the life of the party; that doesn't mean I don't like to party.  So after I began suffering from Chronic Clusters and Migraines my feelings began to be hurt when I would hear about my friends' outings without me.  It wasn't that they were having fun without me; it was that I didn't even get an invite. It took me a while to see that most of those friends were not inviting me because they were trying to think of my feelings.  Making plans is a difficult thing when suffering from chronic pain and canceling plans is even harder.  So most of my friends tried to take the canceling out of the equation by just not inviting me.  

3.  Each friendship is important; even when they do not last.
I have made great friends and I have lost great friends.  Sometimes it is due to distance, difference of opinions or the relationship ran it's course.  But I can honestly say that I have learned a lesson in each friendship I have experienced.  Not all lessons have been pleasant, but I have always learned from them.

4.  Allow people to leave and return.
As I said before; friendship is not always 50-50; sometimes it turns out to be 100-0.  I have experienced this a lot since becoming chronically ill.  There have been times in these last 4 years that I have had to let a friend walk away when they did not know how to be what I needed.  I have had to walk away from friends when I couldn't meet their expectations.  I will admit that some of my friendships did not survive, but most did.  The natural reaction when you feel someone lets you down is to not trust them again.  But I have learned that I am no more perfect than the other person.  So I have learned to take a step back and understand that a situation does not define a whole person.  

5.  Honesty is the best policy.
I have learned to be honest with my friends.  If they hurt my feeling, I tell them.  Walking on eggshells with someone who is a friend will only get you dirty feet!  Those who truly love me and want the best for me will accept me for who I am; mistakes and all!

This post came after conversations with two people who mean the world to me.  So I would like to thank them for the idea and for the unconditional support they have always shown me!!!

Headache Disorders & Migraine Blog Carnival

This month I participated in the Headache Disorders & Migraine Blog Carnival.  Please check out the link below that will take you to all of July 2013 Headache Disorders & Migraine Carnival.  This month's topic was Travel Tips.....

Friday, July 5, 2013

Traveling with Chronic Migraines & Cluster Cluster Headaches

Leaving my house since I became Chronic with Migraines and Clusters is not my idea of a relaxing time.  So when we began planning our first trip in 4 yours this past June, I began to panic.  My thoughts kept going to the many ways this could turn into a disaster.  So I reached out to my circle of support and asked for ways to calm my nerves.  I quickly came up a travel plan.....

1. Have medication, will travel.  I made sure that I had enough daily medications and emergency abortive medications to keep me as comfortable as possible for my 5 days away from home.  

2. Keep my meditation and breathing exercises close.  I downloaded all of my exercises on my iPod shuffle so I could use them to keep myself calm no matter where we went.  

3. Plan to wear layers.  Temperature changes of any kind can trigger Cluster attacks for me.  So I made sure I packed tank tops and carried sweaters at all times so I could try to keep my temperature regulated no matter what temperatures I encountered.  

4.  Pace myself.  Since we went to visit family, my want was to be as involved in as many activities as possible. I have suffered from insomnia for the past 4 years.  Sleep and naps can trigger attacks for me.  So it was important for me to make sure that I rested when I needed.  This meant missing some family time, but made the overall trip much better.

5. Eat regularly and stay hydrated.  It is very normal for my feeding and watering schedule to fall around my Migraines and Clusters.  With Migraines I tend to get very nauseous and the thought of moving to eat food is not appealing.  With my Clusters I have a tendency to eat because sitting still is not an option.  These behaviors are not helpful for providing my body the nutrients I need to be as healthy as possible.  So what I am trying to do it eat healthy meals and snacks throughout the day.  This way if I can't eat due to a Migraine, I am not sending my body into a nose dive.  And if a Cluster hits I try to munch on healthy snacks or find another safe physical activity to do.

6. Enjoy the moment I'm in and don't worry about the next moment.  My anxiety tends to increase when I focus on the big picture instead of the small details.  When I worry about how long we will be from home, how many people I will be around, what perfume/smells I will come into contact with, ect.- I begin to stress. Stress = increased pain
So I try to focus on concurring one moment at a time.  

I wish I could say that I enjoyed a pain free trip, but those of us who are Chronic know that would not be likely.  Three out of the five days were tough.  On the day we were scheduled to leave I woke up in a Cluster attack, with. a migraine, dizzy and I became nauseous every time I moved.  I did not think getting on a plane was going to happened.  I quickly put my plan into action and saved the day- we made our flight home; back to my safe haven. 
Traveling with Chronic Migraines and Chronic Clusters is no high on my priority list.  But it was nice to see that it could be done.  A few things I added to my traveling tool kit for the next time....

1. Bring an essential oil or vicks vapor rub to use as a barrier from other smells.  I have learned through trial and error different smells that will calm the BEAST and others that will send the BEAST into fight mode.  I will make sure the next time I travel I bring them!!!

2. Keep a shower cap handy.  Showers are a must. I use them daily to get clean but also as a way to calm myself during a Cluster Attack.  Having a shower cap means I can jump in a shower whenever I need to and not worry about having to do my hair every single time- that can be exhausting!!!

3. Only pack needed clothes.  I tend to struggle with what am I going to wear when not feeling well.  All of the choices tend to send my brain in overdrive.  This trip I only took what I needed, so there was not any time wasted trying on different outfits or worrying about what I was going to wear.  Less stress = more relaxation!!!!!!

I felt so good about my trip that I am also trying to implement these ideas into everyday life so my anxiety around leaving my 'safe place' decreases.