Migraine: Are You Listening?

Please listen with your eyes to this article from my sweetie:

Migraine: Are You Listening?

Within the past year, I was fortunate to have met an exceptional gentleman through an online dating site. We hit it off rather well. Both were looking for the same ideals, family, morals, acceptance of extended family, and both the same age. He was from far across the US, and I was in the Northwest. 

I could not move, he had opportunity that allowed him to move about freely. 

After much conversation online, by email, then phone, and Skyping, we could not wait to meet one another in person! It was a remarkable meeting and a day that will remain unforgettable for my entire life! I’ll never forget it. This gentleman traveled over 2500 miles just to meet me face-to-face! I was impressed, and flattered. We courted for a time, and the more we were around one another, the more we got to know each other better - we really “clicked.” He was honest and I was honest in our online dating profiles, and we both believed in our truthfulness.

I work full time, have a middle-school child fifty percent of the time with many extracurricular activities, I have an adult married son with one granddaughter, all in the same town. My life is here, I can’t really uproot myself; and now, so is my sweetheart’s. Over the period of a year, we have come to know one another – our likes, dislikes, resolving worries and fears, talking out concerns, cry at times, empathize, compromise, and listen. The last one, listen, is “key” to our relationship – and to all relationships.

You see, my sweetheart suffers from chronic migraine headaches, and has since age 20. For the past thirty years, he’s dealt with these incapacitating headaches, endured them as they show up unannounced, which is often; often enough to clash with his work life, an outstanding and gratifying full time job, (now in his fifth year of disability), his young family and their needs, friends, gatherings, buddy fishing trips, holidays, vacations. Every day he does not know what to envision. He didn’t disclose this to me in his online dating profile. How could he? Would he want to? Yes, I believe he would, but it wasn’t there in the profile. This topic would take a little more explaining, and he was looking for a partner that might show some sensitivity and understanding. I was a complete novice to what a migraine headache is and the hold it has on a person.

I had no idea of such pain, the severe pain, the lasting of the headache for days, the aftermath (hangover), and what goes on for the sufferer in the midst of a migraine. No lights, no noise, as peaceful as possible, nausea, dizziness, numbness of the face (like that of a stroke), irritable stomach and bowel, diarrhea, excruciating pain unexplainable for the sufferer to anyone, a novice, such as myself. I’m learning. I’m in a learning curve, reading, listening and trying to educate myself so that I can be supporting and caring to my gentleman with migraines. We live day to day, and just plan from one day to the next.

The more we stay educated, consult neurologists and physicians, and stay well researched on any and all types of treatments and findings about migraine headaches, the more we might run across something that just “may” help my sweetheart to finally find an end to these brutal headaches. Some think he is lazy, just can’t fight the pain, depressed, less than a man, not involved in life, focuses only on the negative. What is furthest from the truth, is all the above. This man is a fighter and a trooper. You’ve read his blog articles here. If you have, you definitely understand him and can relate to him, to migraines and their power. 

To love someone and to care for them, means to accept them with all your heart, physically, mentally, and emotionally. I want to ensure he is cared for while he’s experiencing pain. In turn, I’m confident that I’ve met a man that has a heart of such giving, that he would not ever wish this type of suffering on his worst enemy. He will be there for me, and I will continue to listen as best as possible. We’ll work together on this, and together, it works for us; always listening to one another. This isn’t about me. It’s about being there for your loved one who suffers from migraines.

~ Ainslie

Migraines Are NOT Convenient

"How Convenient". I've probably heard that phrase a million times or more. My family notices when I miss dinner with the in-laws, going grocery shopping, making dinner or cleaning up the dishes, Church, picking the kids up from piano practice as I promised, and going to work just to name a few. But, how many times do they notice when I miss going to the movies, bowling, shooting hoops with "the boys", or watching football on TV?

You know and I know that migraines are not convenient. I can't pick and choose which events are spoiled by them. To others it may seem I control the strings, but in reality this monster is the puppeteer. My migraines determine the movement of my legs, arms, eye lids, right side and wrong side up, standing or laying down. It controls when I can eat, sleep, walk, talk, drive a car, clean the house, get dressed, and even engage in the things I love to do and with the people I love.

Everyone, other than a fellow migraine sufferer, seems to think that I can control my illness. Control when it allows me to participate and when it puts me in a choke hold. If someone does not suffer from a debilitating disease, then they have no possible idea of the limits I have on my life. No idea of how long it takes to recover from the blitzkrieg.  They just can't conceive the weight of the struggle to make it through a day.

Sometimes, I wish I could wear my pain like a sandwich board, to signal those around, that I have a disease that prevents me from participating. As if, the tears and drooping of my eye are not enough. Some might think that the fact I'm in bed with the blinds drawn and a pillow over my head might be enough. But no, those around me have seen that so many times that it has become the norm and doesn't really register with them. My friends and family have gone blind to the fact that I'm using every ounce of strength I have to keep from clenching up in a ball and screaming at the top of my lungs.

No, migraines are not convenient. Just because I cannot participate does not mean that I choose not to participate.

READ MORE...

 

A Mere Shadow Of Myself

The last couple, three, weeks have been very eventful for me. My migraines have been persistent throughout. In addition, I had a very bizarre appointment with my pain doctor.

I woke up that morning with some pain in my left chest and back.I  really was sure that it was not heart related. But, really thought that it was muscular. Well, I went to my appointment and the nurse did the usual weighing, blood pressure and heart rate. I then told her about the pain I was having. She told me to sit still while she got the doctor. My blood pressure was pretty good, 123/72 and I didn't ask about heart rate.  Dr. Brown came in rather quickly and started asking questions, poking and prodding. He then said that he didn't want to take a chance that I could be having a small heart attack.

He then sent me to the ED to be tested for heart problems. I was then EKG'd, X-ray'd, CT'd, and gave them some blood to work on. To make a complete afternoon, from 11 to 4, story shorter, let me say that all the test's and scans came back showing no problems. Enzymes were normal as well.

So, in addition to my Quasimodo style migraines, I am fighting some muscular chest pain as well. Head pain, and helping care for my mother and father in-laws have sequestered the majority of my time. I have poked my head up a few times but, I have been unable to spend any significant time at the computer and my blogging. And I haven't been unable to exercise to increase my energy and lose some weight.

Please keep me in your prayers this week, as I travel with my father-in-law to Duke University where he is being given testing to see if he is eligible for a double lung transplant. If all goes well he will be put on the transplant waiting list. He has asked me to be his primary care giver which will occupy the majority of my time for the next few months.

 

Don't Let The Migraine Beast Control Your LIfe

I have been burdened with writing this article for nearly two weeks. It's not that I don't know what to say, but that I don't know how to say it. I finally just sat down at the keyboard and started typing. This is what I got.

The beast is migraines in my case, though it could be any number of chronic or invisible illnesses that are suffered by others. The beast has been with me nearly every day over the last few years. It is always lurking, waiting to strike. Sometimes without warning. It presents a burden in a couple of ways.

Migraine is a burden on every day life. Waking each day, with one eye closed tight, hoping the beast is asleep and will let my feet touch the floor. It rides my back even when it is not attacking me, and threatens to strike at any time. I can't make definite plans without allowing for the presence of the beast. My calendar is filled with "penciled in" events. Nothing written in ink. That would present a specific target for the monster. Sleeping, waking, eating, going out to shop or see a movie, going to church, even when I go to the restroom can be determined by the force the beast lays on me. The daily grind of living with this beast tests my strength on a daily basis. And it tests the strength of those I love.

The burden is on our loved ones and friends as well.. It scares others away. Friends who were close no longer call or visit. Family gets tired as they are sucked into the grind. They reach a point where they are overwhelmed by the beast as well. It becomes tiring for them. They may not be able to see the beast, but they definitely feel it's presence. Almost as much as I do. They begin to not make plans, or make their plans without me, leaving me feeling like an outsider who is lost and alone. So many times I have stayed in bed, nursing a migraine, in an empty house. Compassion gets harder to find as the one's around us have to deal with the monster in our lives.

Sometimes, I feel as though I am the beast that preys on my family. A beast of burden that weighs them down as much as my own beast does to me. There are times when their actions and their words reflect the burden that is placed upon them. I try to suffer my illness in silence and not involve my family, but there is just no way that I could live without them. Do others have the same sense of being a burden? Do you have ways to fight back against the beast and gain your life back? Please share.

 

 

Related articles

• Wearing sunglasses can save you from migraines [Optics] (io9.com)
• Dealing With and Understanding Migraine Headaches (wisebread.com)
• Status Migraine: What You Should Know About a Migraine Lasting More Than 72 Hours (somebodyhealme.dianalee.net)

Living With An Invisible Illness Is WORK

Living with an invisible illness like migraine is WORK. I believe that the fight myself and others have is as hard as any 'real' job in the world. In order to keep our sanity, balance, ability to get life done, and not fall overboard is a job. It's very difficult to make the people in my life understand that my invisible illness is real work every day. Even on the days that do not appear to be affected by migraine.

Too many of us know the frustration of having to prove our illness in some way to others with a minimal understanding. The angst of continually trying to explain the reasons why we are not able to complete, a typically simple task at this time, due to the monster storm that is brewing under the surface of our facade. This illness feels like a sinking ship, the deck slippery and going down fast. It's a fight just keeping our heads above water as we watch our lives going down in a swirling sea.

Unfortunately, the rest of the world cannot see the waves crashing over our heads or the water pulling at our feet. Our foothold on a slippery deck that wrenches at us everyday. Each day "our work" may be simply making it through the day. The sinking ship that is everyday life, and keeps us human seems impossible to right. But, we hold on to our life preservers; the loved ones at our side. And, keep trying to reach the rescue boat; which is the thought of a normal life. Don't give up, because we all can reach the warmth and safety of a rescue. Somehow, somewhere, there is a solution to our individual pain and we all need to keep searching to find our own safety. Keep the hope in your life.

 

Caring For The Caregivers

We might not recognize it, but our families and our friends are our caregivers, as much as the professionals that treat us. And, just like us, they need care as well. Our illness, also affects those care for and love us.

I have a family of caregivers. Not only are we dealing with my terrible migraine monster, we also work together to care for my mother-in-law who has alzheimer's disease. I have been given the gift of knowing a little about both worlds. Though let it be known that I would gladly give up both of these gifts.

Being a caregiver takes a lot of energy. Energy to use for ourselves and to give to those we care for. That energy doesn't come to us wrapped in a bow or in an energy drink. It takes knowing resources and tricks of the trade.

I just recently found the National Family Caregivers Association (NFCA) is an entity that has compiled a lot of resources. They have a virtual library of information and educational materials ranging from national educational campaigns to Tips and Tools for family caregivers. They provide information on agencies and organizations which provide caregiver support.

https://www.thefamilycaregiver.org/caregiving_resources/ is the URL to the resources page.

Share this information with your family caregivers, and help them to cope. You can use them yourself, and maybe you'll find some ways for you to cope with your illness as well.

 

Simply Survival

Sometimes, it is not that we are not looking forward to the holidays, but simply trying to figure out how to survive the holidays. Its a time of being together, and not of "let me lie down for awhile". As is the case for most migraine sufferers. We love the holidays. Love the time spent with friends and family. And, who doesn't love getting gifts? But the holidays present a lot of problems for migraine and other chronic illness sufferers.

Having a time of year to reflect on our religious beliefs and share our God with others, is a great thing. We should not take this for granted. There are places in our world that others cannot show their religious beliefs for fear of being tortured and killed. Here in America we are tortured in another way. Christmas is commercialized and trivialized. What we don't necessarily love is the bright lights, the loud noises, and even the smells of the holidays that affect our migraines. Holiday shopping with the stress due to throngs of people vying for the best deal. Every store playing the same songs over and over and over. They even pump it out of speakers in the parking lot. And, I believe, they are wafting the smell of Christmas tree through the ventilation systems. These can all contribute to our migraine Christmas woes.

We love to have visiting time with the people we love. Sharing stories and making memories can make us feel better. But, the preparation, the stress, and late nights can affect us in a negative way. We need to control our environment, to keep our stress levels low, and getting the right amount of sleep is super important in preventing our illness from knocking us down.

It's simply survival. Plan in advance by having break times built into your day. Let others know that the camera flash needs to be announced prior to pushing the button. Find a potpourri that doesn't cause you nasal stress (I can't stand evergreen or worse wintergreen permeating my breathing air). Set the Christmas muzak to a bearable decibel level. And take any other precautions that will help you make it through the holidays. How do you plan to have a Happy Thanksgiving and a Merry Christmas?

  Subscribe To Feed

Kiss Me

Everyone knows that a kiss can make you feel better. Mom's all over the world have said to a child, "Let me kiss it and make it better". I produced the following video to commemorate a lifetime together. But this could be you. Take the opportunity to enjoy your time with loved ones. Make every day special by doing something special with a friend. You could greet your friends and family with a kiss, just to show them how much you appreciate them.




Subscribe To Feed

Bang The Drum

My son and his friends have been meeting in my basement to play music together. They came to me last fall and asked if it would be alright for them to put the drum kit down there and meet once a week. I told them that I was not opposed to them playing in our basement and that I would survive if I had a migraine during their “rehearsals”.

They probably met four times. With the weather we had this winter and other conflicts, they just did not get together as much as they thought they would. Now, each is busy with more things going on. Between school, work, and significant others, they find it hard to schedule a time that works for all of them.

I guess that is fine with me. I only had a migraine one out of four rehearsals and was able to muddle through. Today, a couple of them came to remove the drum kit. I am feeling great, the weather is great, and I helped them transport the kit to the car. My son, was getting ready for work, and the other two and I moved the kit to the car. There was this awkward moment when they all just looked at each other and said, “Well, see ya later.”

I should be happy. I should be banging a drum of my own. I’m feeling great today, and I won’t be living with an acoustic drum kit that threatens to be beaten on a weekly basis. But, I find myself feeling a little sad. I feel like the kids were beaten by some invisible force, or by time and tide. I hope they find some other type of outlet that allows them to let the world know they are alive. May we all have a chance to bang the drum.

  Subscribe To Feed

Related Articles

• Beaver Cleaver (againstthegraine.blogspot.com)
• Under The Bubble (againstthegraine.blogspot.com)
• It's About Time (againstthegraine.blogspot.com)

Life Filled With Love

Everyone, I know, looks forward to the Holidays. Maybe not the in-laws, but definitely the Holidays. ;?)  The Holidays... and the ones we love.

We take this time of year to celebrate achievements and to honor Love.  We choose this time of year to to be with the ones we hold dear to us, the ones we love. It's a fact of matter; Everyone wants to be loved. We all need to feel we matter to those that matter to us.

The fact is, that the hardest person to love is yourself, but the key to finding love with others is to have a healthy self-love. As victims of an invisible illness, it can be easy for us to forget to love ourselves. Sometimes we feel as if we don't deserve a life filled with love. Sometimes our illness takes the love away from us.

We should use the Holidays to welcome love, and show our love to those in our lives. They deserve it, and so do we. Even the in-laws (or out-laws as I jokingly refer to mine).


The October/November issue of LifeWorks, discusses that finding the love for others means wishing them well, as we wish ourselves well. Some of the ways to "find the love" include:

• Treating others the way that we wish to be treated
• Praising honestly and sincerely
• Saying "Thank you"... a lot
• Smile... a lot
• Encourage others
  

You can find more ways to find "the love" by reading the article by Dr. Walker, director of Psychiatric Education at Carilion Clinic Saint Albans Hospital at this link.

  Subscribe To Feed

Related Articles

• Understanding Change (againstthegraine.blogspot.com) 
• Dancing For Rainbows (againstthegraine.blogspot.com)
• Puppy Noses (againstthegraine.blogspot.com)
  

Twitter for Health; Just What We Need.

We are many things. We are women and not women, affluent and monetarily challenged.  We are all the colors and all the theologies of the world. We are leftist or right wing. We live above and below the equator.  We have as many differences as there are differences. Yet, we are the same.

As different as we can be, some of us are the same. We are computerized, have cell phones and email etiquette. We are literate, hooked-up and up-to-date. We may live alone or with others, or both. We may be all these things or none of them, but we are friends.

Our friends are the online-others that share our problems, that notice when we’ve been missing for a couple of days. They reach out to us when we are in agony and pain. Send us hugs and prayers when they are needed most. As friends they sometimes don’t know our face, have not heard the sound of our voice, or know where we call home. But we care for each other.

This is what Twitter provides us. This is what we want and need. Friends to share with, cry with, laugh with, and with whom to commiserate. Friends to share information, support, ideas, symptoms and successes. To our Twitter friends we will never, only be an Icon, an Alias, and an Ailment, no matter how we feel.

Subscribe To Feed




Related Articles 

• climbing back on the horse (posted by MaxJerz at Rhymes With Migraine
• Dancing For Rainbows (Againstthe'Graine.blogspot.com)
• Letting The News Come To You (andrewsullivan.theatlantic.com)
• Unrest (Againstthe'Graine.blogspot.com)
  
• Find Friends to Improve Your Health and Longevity! (Sally Lever)

Living With Migraine, IS Work!

I am not able to do much during a migraine storm. The storm hits like a hurricane and then I'm blown off my feet. If I am lucky, the eye of the storm my pass over me. If it does, I am not usually able to do much when I'm temporarily sitting in the eye of the storm. I know that it is just a brief respite and that the winds of change have to hit me on the other side. Like a real storm, the calm that comes after, leaves a lot of debris in it's wake and my life has to be put back together again.The hard part, and what our non-invisible illness friends and family don't seem to understand, is that our bodies, as machines, are not meant or able to go from 0 to 60 in NO seconds flat. Even though I am feeling better, I just can't jump up, proclaim myself 100% ready to go and hit the floor running. It just doesn't work that way.

There is always, what I have referred to over the last 20 years, as a migraine hangover. A time when all I can do is try to sit and relax. To catch up with my 'life'. It is inevitable that it may take me a couple of days to recuperate and get back into the swing of things.

This is hard work, people! I don't have a 'real' job at this point in time, because my invisible illness has forced me to take disability. But that doesn't mean that I am not working hard.

Every day, it is work to lift myself from the bed. It is work to do morning hygiene routines and work to fix a breakfast, as simple as it may seem to others. Finding energy to clean house, do yard work, finish basement construction, wash and maintain the cars, pressure wash and stain the front and back decks, change heat pump filters, work on the lawn mower, change light bulbs, do laundry, go grocery shopping, picking  my daughter up from school, as well as a myriad of additional chores, becomes very difficult tasks indeed. This is work.

Being a domestic engineer is as hard, while contending with my migraines, as the regular 8 to 5 job I had as an Information Technology Director for a large School of Architecture. The pay (let's say) is very different, but I must take pride in working against the storm, and getting done, what I can. Living with migraine or invisible illness is work. It is hard work, and others should be thankful they are not forced to work in my shoes.

  Subscribe to RSS for Easy Updates

Related Articles

• How to avoid that Altitude Headache (headacheandmigrainenews.com)
• Deeper into Migraine, Glucose and Insulin... (headacheandmigrainenews.com)

Puppy Noses

Well, I am back in the saddle again. I've had a rough few weeks riding out a pretty bad migraine storm, that I am pretty sure deserved it's own 'Hurricane Name'.

I finally went last Thursday and had my FPP give me a shot of Demerol. It was nice to get away from the two weeks of excruciating pain, and being 'slightly' loopy didn't hurt any either. I am now on a course of prednisone (6-3-1) where I take 6 tablets for three days, then 3 for three days, etc.

 My family really enjoys being around me after I have had a Demerol shot, as it makes me REALLY loopy for six to twelve hours. I have a tendency to sit on the couch in a daze and suddenly start laughing at nothing at all. The most famous of which is the time I laughed uncontrollably for about 30 minutes, before I could catch my breath enough to share the wonderful insight I had found in my stupor.  When they could finally get me to speak, I simply said, "Puppy Noses". And the legend lives on.   :?)    ~(my big nosed smiley face)

It's so wonderful that the misfortunes of others can cause such great happiness in others (joking). I don't really see my family as reaping any real benefit from my misfortune.  I am not around to do much during a storm of migraines, and I am not usually able to do much when I'm temporarily sitting in the eye of the storm. You know that the winds of change have to hit you on the other side.

The prednisone usually gives me a couple of really good days or even weeks that are migraine free.  I hope to use some of this God given time to make up for lost time working on the house, catching up on my blogging and reaching out to my twitter friends. (You know who you are.)

  Subscribe to RSS for Easy Updates

Migraine: It Runs In the Family

It has been a tough week. I have been beaten upon by the migraine monster since early Sunday morning. This morning I woke up in pain, but as the day has progressed I've been left with the hangover.

In addition to my in uneventful loss of a week, my oldest daughter spent her week being poked and prodded in an attempt to diagnose her headaches. In January she had four wisdom teeth removed. Since, she has had an onslaught of headaches that are almost certainly a type of migraine. This week saw her getting blood work, a CT scan, and an EEG.

Since many migraine experts say that migraines are hereditary, the odds are not in her favor for these occurances to be isolated. My hope is that her headaches will be short-lived. If they are not, I'm hopeful that my experiences can at least help to find a way to manage her monster.

-- Andy

Migraine: Tally Ho

Volleyball season begins tomorrow for our church league team. Boy, can those Christians be a competitive bunch ;?) I always enjoy our volleyball league play. It is exercise that I can usually participate in, without causing a migraine. Although, sometimes I get dizzy trying to follow the ball.

They finally changed to rally scoring this season, which bums me out. I Can't stand it. I understand why it is the way it is, but I still don't like it. I've been helping coach my daughters high school volleyball team and have definitely know why the scoring has changed. I guess I still have that old school mentality.

I especially think that they should not allow you to lose the game on your own serve. The final winning point should have to be won by serving the ball. You could have a 10 point scoring binge to tie the game and then lose by serving into the net. UUUUGGGHHHHHH.

We'll see how this season goes. My medication is playing havoc with my motor skills. Once an A-League softball shortstop, I now cannot even throw the ball. I am afraid that I'll have the same problem serving the volleyball. I used to have a wicked overhead serve with a lot of top-spin, that struck fear in the hearts of the other team (yea, right). I'll try to provide updates as the season progresses.

Migraine: Make It Easy on the Family

I found a series of videos sponsored by Zomig about planning ahead. I tried this medicine, but determined that it was not right for my migraines. Even though this series is sponsored by a pharmaceutical company, the information contained here is priceless.

The video below is about dealing with family. This one hit pretty close to home. I have been trying very hard to make each moment with my kids, and wife, as positive as I can. Everyone in my life is affected by my migraines. I need to remember each of these five things as my family and I cope with this illness; communicate, make peace, stick to routines, love them, and have an emergency kit.



These things are a little different for me; my family is made up of adults. My youngest is 15 and she is much wiser than her age, and my other two are in college. In my communication with my family, I try to keep my pain out of my conversational voice. Too often, the pain in my voice seems as if I am mad at the one I am talking to. My tinnitus doesn't help. I sometimes talk too loud, because I can't hear my own voice over the buzz in my brain. My family may take the loudness in my voice to mean, I am mad at them. I need to always communicate my true intentions and feelings.

Making peace, for me, means retreating to my lair. While at the same time, not disturbing the other activities in the house. If I need to go lie down, I just excuse myself and go. The rest of the family knows that I am in pain and they seem to turn down the volume without anyone having to ask (or decree).

Sticking to routines is very hard when my ability to participate is so sporadic. For me, establishing routines for myself helps to survive the daily headaches that have plagued me for so long. I try to go to bed at the same time each night, and wake at the same time each morning. I take my medications at the same time each day. I need to implement a work out regimen that I can keep on a continual basis. Making sure that my inability to participate does not affect the routines of the rest of the family is just as difficult. We incorporate extra time into preparation for our day, in case dad wakes with a headache or has had a headache all night (or all day, or all night and day). The rest of the family works hard at keeping to their own routines despite me.

I love my family. I tell them how much every day. We have little rituals that we use to tell each other how much we love them. Saying, "So Much", in my family will result in a kiss on the forehead. It's a tradition that we have had for a long time, and those two words mean a lot more than "I Love You". I never leave or let my wife and children leave home without telling them that I love them.

Having an emergency kit means two different things to me, the tangible and the intangible. I have a toolbox of items, some of which are intangible. Some of the physical items that I keep prepared are ice packs, medications, and a quite room. The intangible items include a positive attitude, relaxation techniques, and hope.

Making plans is important. I have plans for how to deal with each migraine. As the pain level increases, so also, does my steps and tools for dealing with it. My family makes plans for themselves that do not require them to be at the mercy of my headaches. If dad can participate, fine. If not, I know they are thinking about me and miss me.

Especially when they return with a chocolate milkshake.