My List Toppers

(First published on 9 June 2012)

Along with words I like, I keep a list of things people don’t know about migraines. I did not know many of the things about migraines until I started my list, by getting on the Internet, doing some research, and finding good sources of information. I read more updated books and articles, followed migraine journals, and brought myself up to date about the “condition” I had lived with for over 40 years. Now that I know it is not a “condition” or a “syndrome”, but a “disease that has no cure” I am re-evaluating my list. It has made me more aware of all the myths and misconceptions out there that I hear daily.

At first my list was about all the things people would say to me if I told them I suffered from migraines and might have to cancel our lunch plans on the day, should I be down with a bad migraine.  They were coming about once a week then (this was 15 years ago), but I was working, and I needed to let people know if I was not going to be able to show up for a meal, a class or be late getting to work.  My profession as a designer/artist has allowed me to be self-employed. Allowing time for migraines in my schedule has been easier than for those with regular jobs. The work still had to be done, but I could do it in the middle of the night if that was when my migraine ended. The arbitrary 9-5 schedule, except for client meetings, did not get me fired.  I also owned my design business, and could have others take over assignments should I be out with a very bad attack.

The list is still ongoing, but has morphed from the first book I started in 1994. Gone are the black and white composition books that still can be found in any local drug store or supermarket. My tastes have changed, and I now use those lovely “Moleskine” books which come in all shapes, sizes, and types of paper. I love the feel of the paper under my pen. A fountain pen has replaced the ball point pen. Writing is starting to become like drawing, which I have done almost every day of my life in some form or another. The pen is an extension of my hand on the paper. My writing implements need to mesh with my thoughts as they flow from mind to hand to pen to paper. It takes time to find the right tools. So far, this is a great combination.

A few items from the list in no particular order:

Q1. “Have you tried acupuncture? My cousin had migraines and it cured her in just 3 sessions.”

A1:  Your cousin did not have migraines. He/She had some variant of headache. “Migraine is a hereditary disease which has no cure.” I sometimes engaged in conversation to find out more about the “cousin’s migraine’s”. Later a firm, “Yes, I have tried acupuncture, and it did not help” plus a repeat of my first answer was what I say prior to changing the subject.

Q2: “When you want to stop having headaches they will stop.” and the  ever popular –

Q3: “Are you ready to stop having headaches?”

A2: (See first question.) Additionally, “migraines are not headaches”. I don’t always have the energy to explain why migraines and headaches are not the same, that migraines come with other delightful companions, like nausea, tearing, light and sound sensitivity, vomiting, auras that either occlude sight with jagged black & white patters, or make you think aliens are sending coded messages flashing in front of your eyes.  There are many different kinds of migraines which need a neurologist with a migraine specialty to diagnose. “Headaches” do not include all these other things. There are always other questions and comments in the middle of this kind of explanation, so it takes time and perseverance.  I sometimes think the questioner just wants to be “right”, and is not really interested in “knowing”. There will be a lot of “buts”, and cutting off my sentences, that cue me in.

I am thinking of preparing a little flyer or postcard that I can hand to people, just like the deaf people used to do for sign language. On it I will write the basic information, and a few places for them to get more data, should they really want to know, so I don’t need to argue with them about their cousin, their friend, their aunt, or someone they met on the bus. I want people to be educated. I would also like them to be interested when I take the time to explain. After all, they asked! I have not figured out how to breach this gap yet but will post it when I do. “I just have migraines, I’m not a doctor or anything.”  As if doctors know everything about migraines, and patients know nothing, no matter what they suffer through or research. I dislike the word “patient” so much I now refer to myself as “advocate” or “patient advocate”.  It is why we fill out all those forms before we go to see the doctor.

The reply to Question 2 is a bit more tricky. Answering a question with a question can often backfire, but it can also get someone to think.

A2: “Are you telling me that I want to have what you are incorrectly calling ‘headaches’?

A3: “Are you saying I can stop the migraines just by ‘being ready’. What does ‘ready’ mean, anyway?”

This can stop people, at least long enough to get the ball permanently in your court, in control of the conversation. This “new age” idea that everyone is responsible for their own illnesses, and can, if they decide to, cure themselves has been around for years now. I know someone who tried to “cure” Diabetes II herself, by stopping her meds.  She almost died and lost half of one of her legs in the process. When we spoke about it, her answer was, “I was wrong.” Nothing more. It was an interesting approach to something she did not want to discuss. I took her cue and now say, “You are wrong.” End of story. Then I change the subject. I never have gotten an answer to what “ready” means. Still waiting on that one.

Q4: “No, I’m sorry, but I don’t have time to….followed by some form of …”You have lots of time on your hands. All you have to worry about is your “headaches.”  (There is that word again.  Have they not heard anything I’ve told them?) The rest of us are working our butts off, and what you are dealing with pales in comparison to the rest of us have to cope with. How about lunch next week?”

A4: I love this one. It is often the reply when I am mid-migraine. A long, over 48 hour ordeal, and need someone to go to the store or walk my dog, or take 30 minutes out of their day to do something. After asking for help, this is a common answer, and I have heard it in many forms. That I might need help is most often refused, and I rarely ask anymore. As a single person living alone, I figure out ways to get things done. What I have changed is I am unavailable for these same people to do the “little tasks” (often lasting several hours) they need, in return for a dinner or as a way to see them, because weeks have gone by without more than a few short phone calls just to check in with each other.

Three or four hours out of my day, is my day. Dinner does not equal a lost day. I lose so many days, to migraines, recovering from migraines, to depression or fatigue. I empathize completely that others say these things to “protect themselves from that which they don’t want to know”. The truth about this or any illness is still a frightening subject. Merely listening to it is difficult for most people. They can or want to deal with only so much, and then, need to disconnect. As a visiting lama said after traveling all over the US, “Americans are very strange. They all know they are going to die, they just don’t believe it will ever happen to them.”

These are the most often repeated from my long list. After looking at it today, I have concluded that most people want to help.  Most of their comments, however misguided, are because they would like to give you information to stop the thing that is making your life miserable. They are hoping that the article in the “NY Times Magazine Section” last Sunday will be the magic bullet to stop your suffering. There are the occasional comments that are hurtful, like the last one I listed, if coming from someone you thought was a friend.

I don’t hold these comments against others, and let go of them as quickly as I can. We all need boundaries. Knowing how hard these things are to hear gives me greater compassion for those around me.  Discussing my hurt feelings I hold inside my therapist’s office where I can resolve the issue safely.

My list continues, my empathy grows, and the thoughts of a simple postcard or calling card I can use to educate others is starting to sound better and better. Designs are beginning to form in my mind. Perhaps even a series of calling cards, very 19th century. I no longer have a job to define my place in the universe, which in this country is the first thing asked after introductions are given. It is a way, my way, of staying in touch with people I care about, and give correct, current information about “migraine disease”.  Perhaps some of the myths will drop away from their lexicon, and in turn they can educate others, or contribute financially to the fight against this disease which may affect someone else they know.

Should they ever be in a situation during their own lives, and many will, where chronic pain comes to them, they can look at my little calling cards, and find the hope, courage, and strength they will need to see them through what I have lived with for most of my life. That is a karmic ripple in the pond I would like to start.

One of these days I may even get a call, saying “Now I know what you have dealt with all these years. I’m sorry I never understood.” I’m not holding my breath.

Chronic Migraines and Having Fun

(Originally Posted on 5 July 2012 under “Zenandtheartofmanagingmigrainedisease.wordpress.com”)

“Fun” is not a word I use often.  In fact I don’t remember the last time I used the word “fun”, as in “I had fun today,” or “Let’s go have some fun with friends.”  Even as I type the word, it sounds peculiar, and lacks meaning.  When I was a kid and learning new words, sometimes I would say them over and over because I liked the way they sounded or how the syllables would roll off my tongue and create some other image that fascinated me. “Bodacious” was one of them.  Also “persnickity”, and the common “clump”. I kept adding to the list. I would go to my room and repeat the list from top to bottom. The list grew from one page, to two, to three, and over time filled the black and white composition book I was using. I began another book. If I repeated just one word over and over, which I did often, soon it would become meaningless, a combination of letters put together, and the faster I went the more it sounded like “gibberish” (also on the list). I then had to leave the word for a while or its fascination would leave. I might even have to erase it from the list forever.  Fun was never on the list.

I visited a close friend for a couple of weeks last summer.  She is getting on in years and I try to stay in touch, to make sure she is doing well, and is managing.  Not that I need to worry.  She has a large family around her, and plenty of people to support her – better than I can with all my migraines and daily difficulties just managing. After the first few days I was there, and I had related something that happened to me, she looked at me squarely, and told me I had to stop talking about things that were upsetting.  She just could not hear it anymore. I was a bit taken aback, but certainly understood.  Being with a chronic migraineur is not easy. There are so many ups and downs during the day. Then she added something that left me speechless.

“I don’t know what it is. I think you were born without the ‘happy gene’. Your life seems so difficult. You don’t have any fun. But I just cannot hear it anymore.”

Yes, my life had been difficult. I had told her much about it, more than just the migraines, and too much for anyone else to know. I felt quite bad that I had somehow overstepped the boundary between us that drove her to make such a definitive statement.  I went upstairs to my room, closed the door, and lay down. Then I burst into tears. Always able to make others laugh with my sunny personality, I asked myself  “What had happened  that this wonderful, generous person I loved and cherished would think, and need to say to me, I had no ‘happy gene’? I was sad, and then very angry.  Angry that she said that to me. Angry at myself for talking about something no one except another migraineur could really understand, or tolerate. Intolerably angry at the disease that had turned me into someone unrecognizable. Someone with whom no one wanted to be. I was ready to pack up and go home. I made a few calls. One to my therapist who calmed me down, and stopped my packing. One to an old friend whom I knew would listen and say nothing, which is what I needed. And one to her daughter to make sure we would be walking early the next morning.

The next morning when I rose at 5:45 am for my walking date at 6:00am, the “fun” thing was still on my mind. As she and I did our 6 mile circle, I brought up the subject, and we discussed it for a bit. I knew she would give me some good perspective, and she did. I told her I would do everything I could to make the rest my time there as cheery as possible.

I walked every day, did everything I could to help around the house, and kept my pain to myself. I would say “I’m fine” even if I wasn’t. Any migraine pain I had while I was there I kept to myself. I realized that there are people who just cannot delve the depths with you. Those dives are best left to professionals or others who share, or are willing to share your specific maladies. Before I left, I did say, in as loving a way as I could manage, that having migraines was a disease just like any other disease. It was genetic and I did not choose to have it. There was no cure, and whether she liked it or not it was something she would have to accept as a reality. I could not  “choose to not have migraines”, but I would surely not talk to her about them if it upset her. That was the last thing I wanted to do. I gave her a big bear hug, and I could see from the look on her face that she did not believe what I had just told her. So I smiled my biggest smile from ear to ear, and went on to something else.

I called to arrange a trip this fall to see her, and she asked that I come only one week this time, two weeks was just too much for her. I tried not to take this personally, but was feeling like my friend and I had reached a crossroads, and were parting in some essential way. But she is getting on in years, and is finding her own way of “pacing herself” just as I am.

I cannot express how many events, trips, plans, parties I have missed or had to cancel because of my migraines. I don’t make plans anymore. It has turned me into a hermit. How do I change the pattern thrust upon my by a disease I never asked for, that has gotten worse over time instead of disappearing? I am left looking for the me that used to enjoy everything. How can I get her back?

One day at a time is all I can manage at the moment. Pacing myself so I don’t use my entire book of tickets for a good time in one day. Not talking to anyone about migraines! This is difficult. Should I want to do something, I have to make a plan. Making a plan requires being there. Being there requires “no migraine”.  You get the picture.

I resolved to do one pleasurable thing every day, for at least an hour. That is on my front door.  “Have you done something you love today? If not, turn around, take your coat off, and decide what to do before you leave.”  It is a reminder of my committment, and although not always kept, reminds me to keep this a constant part of each day.

Remember to smile. That is a little note I keep in my bag because I need reminding.

Am I having fun yet?  Have I found my happy gene? No, but I am looking. I’m looking every day, and some days finding one or even both.  Even though these words never made it into my list, perhaps I can dig out those old primers, and add them, or better start a new list. The new list will not be created from mellifluous words that fascinated my childhood world. It will have words I can live and use in my life as a chronic migraineur, now, in my present as it is, not as I would like it to be. Then perhaps I can begin to rejoin other people’s lives, finding the words on my list that matches theirs, and start to regain my “fun” life again.

Random Acts of Kindness

(First published on 30 June 2012 under “pained.wordpress.com”

I have taken my second dose of nasal administered Toradol this morning – about an hour ago. My first dose was at 10:00 last night when I knew I had held this off for as long as possible, and I was going to have it now whether I wanted it or not. My flashing light auras had been present all day, and I knew the night before that I one was on the way. I woke at 4:00 am, my normal time for this kind of migraine, and I lay in bed unable to sleep. I listened to the soft breathing and little sounds my dog Sophie makes when she is sleeping. They are so sweet and comforting. They remind me that kind of slumber is possible, even if I am not a dog.

I lie in bed going in and out of sleep as the pain increases. I need to get up and take another Toradol dose. In my dazed sleep I watch myself doing this several times until I realize I am still in bed. I get up, take the meds before things get worse and then impossible, walk Sophie and settle back down for a day of rest.

I moved two days ago (just 9 miles up the road) to a 55+ community, hoping I will be able to make some friends and not be so alone with this disease. I don’t want to impose on folks so much as I need real people to talk to. Some days when I have had a particularly bad spell – the over 60 hours in length – it will take me another 3 days or so to recover and getting Sophie out for her walks is very difficult.  I am on the ground floor here, which helps. Today I will miss the end of month “gathering” where I wanted to meet more of my new neighbors. Once agin, I have to cancel.

I have met my immediate neighbors – all friendly and all dog people. Each person has let me know they will take Sophie out if I am laid up, which is reassuring. My old building in LA was like that, but not many others. I have always tried to have a yard for my dogs, but it has gotten more expensive, and as a single person, unable to work because of chronic migraines, my budget is as limited as I am. Too many years of doctor bills, medications running over $20,000. a year and that is with health insurance!

This move is my second in 6 months.  I made it primarily because there are more amenities at this complex, and planned activities. I would not necessarily join in everything, but the opportunity for contact with people with whom I can interact is there. (I just had a hot spear go through my eye, so I am going to try to get this finished and posted before I take another round of Toradol.) The nasal spray works well, but burns my nasal passages horribly, and the pain just adds to the migraine, and the nausea if it does not get absorbed quickly and runs down my throat into my esophagus and stomach.

All of this is backup.  I have always been a very independent person. I have always lived alone except for a 10-year period when I was seeing a man with whom I shared a business. We spent a lot of time together but somehow it worked. We were a great team. After 10 years our work lives were beginning to change. Our client and business needs were separating, and the relationship parted with it. Since then I have had little outside help other than the systems I put in place to take care of my illness.

Being single and living alone for a person with chronic migraines is like being in the wilderness with minimal supplies. I have dog walkers I pay, people to do errands that I also pay, or I can call friends. I make sure I have ready-cook meals in the freezer. If I have to call a friend, they almost always say “no” to my requests for a quick trip to the store, or a walk for Sophie. I have learned never to call them unless it is an absolute emergency.

When I have lived in a city like New York or LA – or a suburb of a city that has vendors with delivery services – I can get things done for myself more easily. But sometimes that is not enough. I just need someone to know I am still alive. I can go two weeks or more without talking to anyone, or seeing anyone I know.  One day it occurred to me, after a particularly long and bad attack, that I could have a stroke in bed from one of these things, die, and no one would know. My psychiatrist reassured me this was a highly unlikely event to even consider, but in the back of my mind, it lingers.

A few times friends have brought over food – cooked, hot, and edible for a delicate stomach. The all-purpose chicken soup is especially wonderful, and I have appreciated that gesture more than they know.

One friend just sat with me for a half hour. I was in tears the pain was so bad. I knew the tears were making the migraine worse, but I could not stop the flood.  She just sat there and held my hand. I did not have the heart to tell her that my entire body hurt, and even a soft touch was too much. She kept telling me I was not alone, which was the most comforting time I ever had with a bad episode. We lived in the same building, and although later became estranged over a series of incidents, we reconciled our differences before I left. Good for us both, since there was a lot of shared experience and good feelings underneath the events that caused the problems.

It is the little things that I remember people doing for me when I have been really ill. Making sure I have a bag of ice in the freezer. Food I can microwave. Plenty of water – bottled if I don’t have a filter system. Help with Sophie if I need it. Talking to me in person for a half hour, and not leaving food outside the door on the way somewhere else. I know everyone is busy. It is easy to think that about anyone who is ill, but especially chronic disease like migraine, that can hit several times a week. It is too much to ask for others to take anything but the smallest time from their schedule to help. They did not sign on to be your care-taker when they became your friend.

I have thought about this a lot as I have lost friends because of this disease, and my inability to take part in everyday, normal life. Contact is not care-taking.

Many people shy away from helping someone who needs a bit of short-term help. They are afraid it will become a burden, or worse, I will expect their help, no matter what. They are unaware that I, and I think most chronic pain sufferers don’t ask anything of anyone, except in the most severe circumstances. This is an important distinction. As a single, live-alone chronic migraine sufferer, I live in my world mostly devoid of people besides the checkout clerk at Trader Joe’s and the pharmacist. Any personal contact by a friend is more than just a visit. It is a feeling of inclusion into the world I so rarely get to enter that makes it so special. Thirty minutes are enough.

I made the mistake once of calling a new-ish friend when I was hurting and needed to blow off steam. She was at home, listened to the message, but did not answer. I took a risk making the call. She is a fragile person, and she misunderstood what I needed – someone to listen. The next day I was fine and back to normal.

I received an e-mail 3 weeks later telling me that my phone call had upset her so much she cried for 3 hours, and decided she could no longer be my friend. Perhaps when I was feeling better and I could be my funny entertaining self, we could be friends again, but only on that basis. My need to blow off steam when I was feeling down, to get an “I understand” or  “I’m sure it will pass, you’re a very strong person” was interpreted with total rejection. I know this had to do with her issues not mine. I know she misunderstood what I needed, and turned my need for someone to listen, into a larger than life decision over what she could and could not handle as my “friend”. I took the risk to think she might be a “friend” when “acquaintance” was the limit of our association.

I decided not to respond to the e-mail, and we have not spoken since, although I miss her warm sense of humor, her creativity, and the fun we had with each other. Others think I was overly harsh, and did not have to go to such lengths. Others don’t have to cancel 95% of their social engagements because of severe chronic pain. I could have explained the situation to her from my point of view. For me it was in the realm of something she would have to figure out for herself, should she be so inclined.

Others think I am not busy, and have time on my hands. I am as busy as anyone else, combatting a disease for which there is no cure – at least not yet. This is hard work, the same as someone fighting any other disease. The only difference is that there is no cure. I am forever trying new drugs. Many don’t work, some make me sicker, nauseous for a week while my body adjusts, only to have to stop using it because it just doesn’t work with my system that has suffered with this disease for 43 years. Chronic pain from migraine does not have the proper appearance in the outside world where visual content is everything. It is largely invisible by those who have it, and is often under or mis-diagnosed by the estimated 36 million people who have it in the US.

I often wonder why people shy away from hospital visits to friends, to those who have lost a spouse or good friend to cancer, other disease or old age. It is not hard. It takes no special skills. Food for the stomach, and some conversation for the soul is all that I would like. And perhaps the company of your time here and there. Nothing outrageous. Just a friendly face at the door.

The Carnival

(First published under “pained.wordpress.com on 7 July 2012)

“The air in my apartment is acrid.  There is a permanent cloud of dust that never settles.  My head is starting to hurt.  It is the deep insistent onset of a migraine is growing louder with every second.  The left side of my head has the dull ache that soon I will not be able to silence. The pain wakes me at 3:40am, and sleep escapes out the window. I take my medication and get up.  If I concentrate on something I can slow the inevitable from coming down the tracks while the pills start to work and sleep will overtake the pain. I enter my second bedroom studio to see if what is available.

I have a swift – well I have several swifts, but my most beautiful swift is from Japan.  A swift is a contraption of sticks and a center post where one places a skein of yarn to be wound.  Once on, it looks like one big wide circle of color about 18” in diameter. The swift keeps the yarn from tangling, turning while the yarn winds into a perfect ball on, suitably, a ball winder.  I also have several ball winders, each for a different purpose.  At windings end, the yarn end arrives in the middle of the ball – not on the outside where it can easily tangle to create a mess.  American and European swifts turn horizontally.  Japanese swifts turn vertically.  Picture a Ferris Wheel, with the yarn where the people should be, going round and round. Japanese yarn skeins are smaller, as is the swift. The wood is cedar.  It is much more beautiful to watch.

As I turn the ball winder, it looks like rows of people getting off and going onto a round bus in a very organized fashion.  If I lose my concentration and wind too fast, I lose a person or two (tangled or broken) and must stop to fix it. The bus gets bigger and bigger as I wind.

Sometimes the yarn catches the light and people are pearls, some are holding hands, some are just running for their lives to keep up.  I slow down slightly so they all get to the bus.  A sweet sigh escapes when the last thread leaves the swift.  The ball is taken off its winder, fixed to th other threads, the door closes,  and the process begins again.

After a while the swift becomes relegated to the general carnival noise in my head, and the pain starts to return. The throbbing, aching pain comes back while the endless motion of the Ferris wheel is turning.  It recedes as I concentrate on getting all those yarn people to line up.

I play games with the usual carnie folk – the guy with the sledge hammer trying to hit the bell.  The bell gets hit more often than not sending shock waves through my left cerebral cortex.  As the darts fall in the center of the dart board they mimic the ice pick hitting its mark down the center of my nose.  Only the slight hum of the Ferris Wheel, yarn people silently getting on and off, the faint whirring, some stepping and some just moving on, seems to have any lasting effect on the pain.

I struggle more to concentrate, there but just beneath the surface. The Ferris Wheel keeps moving, the sledge hammer keeps ringing and dart board keeps hitting its mark, thump.  On and on they go:  whir, ring, thump, whir, ring, thump, whir, ring, thump.  Whir faster, ring louder, thump harder.

I stand up, lose all sight, unable to lift my head, the pain has overtaken the carinal and I let the ball winder stop, yarn people falling all over the desk scattering here and there, to be found later and put back on the bus.  My stomach feels nauseous now from the carnival noise and smell of the fried batter, hot dogs and cotton candy.  I have stayed as long as I can.

It is time to block out the light and the sound and get some ice for my forehead and try to sleep.  This pain will be around for a while.  The little green pills that belie their strength, are starting to dull the pain and help me sleep.  I check the time so I know when I can take the next round of greenies.  I drift off, try to sleep, but my mind is still turning.  My little carnival has stopped now, and is twirling quietly into the distance.  Only the swift, half empty of yarn, remains in the studio as a reminder that a battle has been fought, and for a while, won.”