Migraine Disease Is Not FUNny

                    
via GIPHY

Suffering from Migraine Disease will never be fun. I guess I'm stating the obvious, for anyone who is suffering with this invisible disease. I've suffered with the disease since the early '80's and it has never been fun. With this said, I have always tried to find the funny in the world.

I spend too much time in the dark confines of my bedroom. Blackout shades, no lights, no odors, no noise, and really no human contact. What does your brain do in this kind of environment? You either focus on the negative, or turn to thinking about, imagining, or questioning the world that exists outside of your cave. I choose the latter. I last had the ability to work at a professional career in 2008. Since then, I have experienced an average of 16 migraine days per month. So, when I'm in my carefully constructed migraine environment friendly cave, with an eye mask, icepack, and pillow on my head; I dream of the good 'ol days, and I think of the interesting, odd or funny things in life.

I have to do something to keep my mind distracted between the pain and sleep. I choose to analyze the world and attempt to find the funny. As I'm able, and remember, I keep notes on my phone of the strange things my brain comes up with. It can be scary, for the uninitiated and myself, to see the weird and funny things that pop into my mind. I have been a clown my whole life and I have no problem with people laughing with or at me.

When I'm down for the count, I push myself to think about things and not pain. I don't think, Why me? I think about the why's of the world. I put square pegs in round holes, solve world hunger, and cure cancer. Don't I wish. The funny is there if you allow yourself to think about it. I like to make myself and others laugh. When I'm stuck in my own head, I seek the funny. I make up jokes. They're not all great, not all laughable, or even something I can share with others. But, I try to remember the good stuff and write it down at my next opportunity.

When the "Monster" isn't on my back, I make the most of every moment. Trying to stay active is https://giphy.com/gifs/car-head-window-aBfSGPDRDSdqw
difficult at best. Between Aura, Prodrome, Migraine, and Postdrome, it can be very hard to be any kind of active. There are times when those around you up and moving and assume that your '100%. Having 16+ migraine days a month also means that you can have 3x that, while suffering the other three phases of migraine disease. Just believe me that the math works according to my limited knowledge of 'new math'. With the time that is available to me, I try to have fun.

Active days mean that my body and my brain are alert enough to participate in life, and when I do, MY PEOPLE know about it! You can hear my joy for miles! I have a bounce in my step, laugh at the stupid, joke around, and hang my head out of the car window and howl at the fresh air. Most times I'm even more gangster than that.

I've recently found stand-up comedy open mic nights. When my non-communicable disease (put smiley face here) allows me to get out of the house and there's a show, I go laugh. I laugh with others and I laugh at myself. I laugh at the absurd and the sublime. I make new friends and we laugh together, at least on the inside.

I urge my fellow migraine and invisible illness sufferers to take the opportunities they have to get out and live, when you can. Take chances. Don't be afraid or embarrassed. YOLO, You Only Live Once, so howl at the wind!

Pardon my rambling,

Shooting the Gap

We've all done it. Finally we can move and we are able to amble slowly ahead and in the right direction. Have been in the same space for what may have been minutes, hours or even days. You're not able to take off and just go because you know there's more blocking your way ahead. You're not able to move past on the right for fear of falling off the edge. There's absolutely now way you would want to go backwards and experience the same past all over again, and you can feel the space to the left disappearing fast. What do you do? Shoot the gap.

This is the migraine 'high'way of life. If you are a migraineur, then you probably more than understand what I'm trying to say. We live each day fighting the same old traffic, as the day before. And, if we are lucky, there's a small little gap between light and dark that we may be able to take advantage of, in order to move ahead in our lives, if only for a moment.

It's hard to shake the pain and make ready for an opening. You never know just when it's going to appear, but when it does, you MUST be ready to take advantage of it. You lay in wait, between the pain of the past and the pain of the future and PRAY. When it happens, you gun it, put the pedal to the metal, and shoot the gap.

If it lasts for a second, or it lasts for days, you have to live your life like there's no tomorrow. There may not be, because you may be stopped in your tracks unable to move and unable to know how much time has passed since you last enjoyed being up and running. The next you know, you look up and your moving again, slowly, carefully, and somewhat afraid. Are you still in the slow lane, with a migraine on your back bumper, or have the hours and the days passed and your about to plow into the next one just ahead?

Is that a gap just ahead? Are you close enough to your destination that you can you get out and crawl, walk or run forward? You MUST make the effort. You run, swim, bike, ski, hug your family and friends, PRAY, smile, or anything your body and mind will let you do.

This is shooting the gap.

Migraine And Keeping Your Sanity

Migraine makes keeping your sanity feel almost impossible.  We work so hard to keep our sanity and migraine works just as hard to keep us from it. Here are some ways that might help in keeping your sanity while dealing with migraine. This list is not all inclusive. They are just the beginning in 'keeping sanity' despite your invisible illness. See "Migraine And Living Life", and "Migraine And Work" for other ideas you may use in your struggle.

• Find a treatment plan that works for you and stick with it. Even if this plan does not keep you migraine free, finding a way to decrease or lessen them is a must. Work hard to find some kind of relief, if only for a short while. This is important for you and your life, your job, and your sanity. Finding one can be tough, but don't give up.

• Exercise daily:  The advantages of exercise are  undeniable but many of us continue to ignore this.  Remember that exercise strengthens our bodies and our minds and helps improve our endurance.  This translates into everything we do, whether it is the work environment, or the activities of daily living.  It also helps us feel in control and healthy, and reduces stress.  

• Schedule time for yourself:  Even if it is only for 30 minutes, schedule some renewal time for yourself. Everyday bathroom time does not count. Take a nap, meditate, read. Do something that you feel is relaxing and enjoyable to you. You might find that when you take a few minutes for yourself, it feels that you have more time for other things.

• Be grateful:  The world is a wonderful place and we have been given many gifts.  I feel that every day I wake up is another gift and that everything that follows throughout the day becomes a bonus.

• Try finding hobbies or other jobs that can be worked on in small segments and are easier to pick up and lay down.

• Find activities that you can stick with. Activities become habits. Habits become your character. Your character becomes your destiny. Become a slave to good habits. Doing the right things right develops strength of character that leads to success.

• Cultivate relationships with family and friends. Make it a planned habit to communicate with them face to face, through the phone, email, texting, and attending church activities. I find that using Facebook is also a good way to keep up with the lives of friends and family.

• Don’t take yourself too seriously:  I will leave you with this last idea; Infuse humor in your life and do not to take yourself too seriously.  Lose your ego and liberate yourself. Life is for growing and learning. Try to enjoy all the little moments of your day and stay happy.

Migraine And Living A Life

 Having a real life (and not a maybe or abbreviated life) can be difficult even without having migraine disease. It may seem that life and the world around us is passing us by. We get knocked down, and when we are able to get back up, our family and friends have moved on to another calendar day and other activities. It's hard not to stay depressed and question ourselves. Here are a few ideas for helping you lead a life, even if you have an invisible illness. The ideas I gave in my last article, "Migraine And Work", can help with living a better life as well as work and should be looked at for more ideas.

• Do all that you can to find a treatment plan that works for you and stick with it. Even if this plan does not keep you migraine free, finding a way to decrease or lessen them is a must.

•  Make your plans so that you are more likely to be able to finish them. And work up in scale, over time, as much as possible. Making plans for outings with others can be a crap shoot. Do what you can, when you can and branch out to bigger plans.

• Take medicine and treatments that help you to live more thoroughly. Sometimes treatments may be set aside even though they work, simply due the cost or time it takes for these treatments. Even if you have to decrease the number of visits, put them into your management regiment. Getting some help, even some of the time can give you some time to feel more healthy.

• Teach your family and friends about your suffering and provide ways that they can help you. They need to know when to rush in, and when to leave you alone. Sometimes the best thing they can do for you is to let you crawl into your cave.

•  Let others know about food allergies or triggers. Teach them about other triggers that can cause you trouble. Discuss the disease with them and help them to understand that your inability to make it to many functions, is not a slight to them.

• Act in accordance with given prescriptions, treatments and any triggers that affect you. If you do not take these seriously or act nonchalant about missing medicines or being around  these triggers, it makes it difficult for those around you to take these things seriously as well. I have a hard time staying away from several foods and will sometimes have them when having a migraine. I tell others that if I already have the migraine,  that food can't trigger a migraine. This is not a good practice for any of us. 

You have a life to live. Taking care of yourself so that you can live and work are important. Don't give up. You are not alone.

 

Migraine And The Abbreviated Life

There are so many people that have suffered from migraine, or other invisible illness, for much of their lives. I myself have dealt with Migraines for over 30 years. That is about 60% of the years of my life. That's means that for more than half of my life, I have been suffering, been forced to stay in bed, cancel plans, miss some of the milestones of my children's lives, and too many other activities to count in a single blog article. I don't want to obsess over them anyway. It's just too depressing. But, this is what I mean by an abbreviated life.

An abbreviated life is one that stops and starts, has gaps in time when we are just not able to contribute experiences in other's lives in general and the world as a whole.

It's not unusual for us to wake up and be unable to face the day. To bow out of the days events even though they may be part of our our own dreams and/or plans. We are there one minute and gone the next. The ones we love know not to plan anything that may require our presence. That we may have to exit what ever is happening and be gone for hours or days at a time.

Sometimes I feel like what some people like about me is that I'm a reliable disappointment. (just joking) It is easy for a severe pain sufferer to condemn themselves as a disappointment to others as they are looking at the world from the wrong end of the binoculars. The pain sufferer may feel worse than the people around even suspect. The pain being invisible to others. It should be known that an abbreviated life, is the existence that many other people with invisible and visible illnesses lead as well. How do we exist beyond an abbreviated life?

• Work hard to find a treatment plan that works for you and stick with it.

• Make plans that you are more likely to be able to finish. And work up in scale as much as possible. Try finding hobbies or other jobs that can be worked on in small segments and are easier to pick up and lay down.

• Take medicine and treatments that help you to live more thoroughly. Sometimes treatments may be set aside even though they work, simply due the cost or time it takes for these treatments.

• Teach your family and friends about your suffering and provide ways that they can help you.

• Let them know about food allergies or triggers.
• Teach them about other triggers that can cause you trouble.

• Act in accordance with given prescriptions, treatments and any triggers that affect you. If you do not take these seriously or act nonchalant about missing medicines or being around  these triggers, it makes it difficult for those around you to take these things seriously as well.

What other ways do you have to overcome the abbreviated life that claims migraine as well other invisible illness victims?  Feel free to leave your comments below or email me this information, or any other questions or examples of living beyond the abbreviated life.

 

Decrease Migraine Down Time

Who wouldn't prefer a natural remedy for their migraines? Here are five life changes that could naturally reduce the number of migraines in your life. The practice of  living a healthy lifestyle is difficult if you try to take it all on at once. So, adjust one item at a time.  Altering some bad habits may be what is needed to decrease the number and severity of  migraines in your life.

Using natural remedies may be more effective than over the counter drugs or hardcore prescriptions. Some of the medicines taken as prophylactic, designed to prevent migraines, may even lead to more migraines and unwanted side effects. The side effects can feel as bad as a migraine attack itself. By changing aspects of your life and the way you live can decrease the down days of most migraineurs.

Get More Winks

Everyone needs a certain amount of sleep each day. We each need to assess the amount we, as migraineurs, require in order to make it through the work week. It is very easy to get your days and nights reversed, when your body doesn't get enough sleep at night, or gets too much sleep during the day. Trying to make up for lost sleep is said to be useless and may set off another migraine attack.

Sweat More

Everyone can benefit from exercise. Those with migraine may need to work up a sweat as much as anyone else, in order to relieve stress triggers in their lives. The amount and type of exercise is different for each individual. A simple 30 minutes of exercise, three or more times a week, will definitely help reduce tension and stress in your life. Endorphins, released during exercise, reduce pain and inflammation in the body. A little sweat can go a long way.

Eat The Right Foods For You

It's one thing to say, "Eat right", but the right thing for one person may be harmful for another. Eating breakfast and having meals regularly are good for you. Some foods may be a migraine trigger. Foods like bread and other sources of wheat glutens, citrus, onions, aged cheeses and meats, and processed foods may be triggers for some migraineurs and not for others. Take the time to test your diet for triggers and stay away from foods that cause you to have an attack.

Watch Your Drinking

Watch what you drink and drink more water. Soda, tea and coffee are diaretics and can cause dehydration. Water is a necessity of this thing we call life. It seems so simple, yet is very hard for many to get enough water. The amount of water you may need to drink is suggested differently by different sources, but it's very difficult to get too much water unless you are drinking a bath tub full. Migraine attacks can cause dehydration. Dehydration may contribute to the migraine cycle. I've never heard of someone 'drinking' too much water.

Manage Your Stress

Stress is inescapable. Almost every moment presents some kind of stress. We need to learn to walk away, or deal with the stress in our lives. Learning to manage stress is one of the best ways to decrease the number and intensity of the migraines we endure. Try reading, meditation, moderate exercise, getting enough and the right kind of rest, and eating a balanced diet to reduce stress in your life.

Making life changes is difficult. It requires focus and discipline to make changes that become habits in our lives. Keep your perspective by looking at your changes one day at a time and carry them out every day. These changes may not be a total migraine cure, but they can only help to manage them in your life. If any of these suggestions eliminate even a small amount of down time, wouldn't be worth it?

 

Related Articles

• Finding the source of migraines (and fifty useless migraine drugs) (boingboing.net)
• Why do I always have migraines when I am stressed out? (zocdoc.com)

Back To The Migraine Grinder

More than a month ago I started a journey with my father in-law who was seeking a lung transplant. My week with him at Duke went rather well for me physically. I went the whole week without a migraine problem. My father in-law did not have a good week at all, with all the testing as well as a complication that had him admitted for two of the five days.

We recently found out that he has been denied for the transplant. This is a stunning blow for him. There is no actual cure for pulmonary fibrosis, but the transplant held promise for a somewhat normal way of life. Now he knows that he will be tethered to an oxygen source for the rest of his life.

He doesn't show it, but you know that he has to be depressed. I know that knowing about his condition has contributed to my depression. Contributing to my depression has also been the fact that I have had five migraines in the last two weeks. WHAT is going on? I had so much stress in Durham that I felt run ragged. I didn't much chance to stop or slow down. Typically stress like that would have put me down immediately. There just hasn't been stress like that since I've been home, but the attacks have made me feel like I have been run through a grinder.

We must remember that depression can wear us down as much as any other disease. Sometimes it may vary as to which is our primary illness. Depression is a disease as well. And, you may struggle with depression even when your migraine or other disorder is not prevalent. Check your medications to ensure that you are taking them properly and make an appointment with your doctor if your medications seem not to be working or your condition changes.

So far, I am riding down the same road as before. The same grinder has hold on my life. Thanks to everyone for the prayers.

 

Longing For It

I've had migraine disease for over half of my life. Sometimes I can barely remember what it was like without it. It is only now in the past few years, that research has sought drugs that work on curing the disease. We still must settle for management no matter how much we long for the cure.

Just when I think I have it bad, I see others that I know with less hope in a cure for their ailment, than I have. There a many, many diseases in which there is no cure. Fibromyalgia, lung and heart disease are to name but a few.

My father-in-law is dealing with pulmonary fibrosis. Another disease without an outright cure. His options are to live approximately one to four years (yes, some do much better), steadily getting worse until he dies. Or getting a lung transplant. The lung transplant is a short term fix with approximately a 5 year survival average. What a difficult decision he has. The transplant number only counts if he is one of the 85% that make it through the procedure or he even passes the tests to be added to the recipient list. I thought I had it rough.

I went with him last week for the preliminary testing, which usually takes five days of ongoing evaluation. Unfortunately our visit wasn't typical. He had to go off his PPI (Protein Pump Inhibitor) for five days. His acid reflux was so bad by tuesday, that he was vomiting blood. He was too weak to attend the morning's first appointment and was sent to the emergency room.  The ER decided to admit him and have an endoscopy performed to look into the bleeding. He had to go without food for the second day in a row and was getting weaker by the minute. The endoscopy showed some erosion, but nothing actually bleeding. He ended up spending Tuesday and Wednesday in the hospital and missed all of the scheduled appointments for those two days. Thursday morning he was permitted to eat and was discharged. All but one appointment attended. But, Friday's heart catheter was cancelled because of his being still weak from the previous two days.

I tell you all this, so that I can keep some followers informed. But, I also tell this story to explain how much worse our problems can be. My father-in-law must now wait to find out if he will be placed on the recipient list at all. Hopefully he will be given the opportunity to have missed testing performed before the evaluation is made.

I know that no one is promised a single second of life. How much worse it must be, to have an expiration date placed on your life and to know approximately how you will expire. My heart and prayers go out to anyone in this same situation. Now, my disease, which plagues me almost daily, doesn't seem to be the worst possible situation. No matter how bad we have it, we should all count our blessings.