Thursday, June 7, 2012

Migraine Awareness Month Challenge #7: A Letter to Those I Love

Today's prompt for the Migraine Awareness Blogger's Challenge is "List Topper: There are lots of myths and misconceptions about Migraine.  Which one tops your lists as the biggest and most common? What can we do to get the truth out there?"

My Dearest Friends and Family,
     This is a very long post, but I don't think I've ever written anything that I want you to take the time to read as much as this.  I think one of the most difficult things about having Migraines is that they are so difficult for other's to understand.  Migraines are so often associated with headaches, and the media has done more than it's share of promoting that fact with ads such as those for Excedrin Migraine.  I would be ecstatic if it were only that simple.  You see, Migraines aren't a simple headache.  They are a complex neurological disease.  When I tell you that I am experiencing a Migraine, I am not telling that I have a simple headache and sometimes I don't know if you understand that.  

Before I became chronic and only had Migraines four or five times a month, I was more able to accept that people might not understand exactly what a Migraine is; however, now that I have Migraines 24/7 and they have changed my life so dramatically, there is so much more that I want you to know.  A pivotal moment stands out in my mind when I was sitting with one of you during one of my roughest moments and you said that what you were seeing then is what you thought of as a bad Migraine and that before then you hadn't really thought I had bad Migraines.  I have had friends with periodic Migraines say they don't understand why I have had to go on Disability due to my migraines and can no longer work.  Maybe I do myself a disservice by not telling you the amount of pain and other symptoms that I experience.  I don't want to live out my disease in front of the world.  I don't want to be one of those people who is always listing out their woes and ailments.  I don't want to play the one-upmanship game where I try to convince you that my pain is worse than your pain. Yet, I think sometimes because I don't let you see the severity of my symptoms that you may see me as lazy, malingering or exaggerating.

One of you mentioned to me recently how depressing my home was because it is always so dark and that truly hurt me.  I have always loved light - wanting every curtain open wide and couldn't understand why in the world anyone would want blackout curtains - and now because of extreme photophobia, I have no option but to live in a dimly lit world.  You see, with my Migraines, light is extremely painful.  It doesn't just cause pain. It also sets off extreme nausea - the type that you just pray that you could throw up so it would go away.  It also causes my eyes to see lightening bolts and flashing lights, as well as to lose part of my vision.  

I also feel like a burden because I so frequently have to ask you to not wear perfumes or scented products when you are with me.  Sometimes, I see this rolling of eyes when I mention scents.  This isn't a matter of personal taste or choice, it is because the scent itself also causes me to have excruciating pain, nausea, and problems with my vision.  

My Migraines also cause horrible problems with hearing - in that my hearing is very over-sensitive.  When I get in the car with you, and you are playing the radio and talking and I ask that the radio be turned off, it's not just because I'm persnickety or don't like your music, it's because Migraine disease makes me very overly sensitive to multiple stimuli and I want to enjoy our conversation.  When I am in settings when there are multiple conversations, distracting noises, and lot of movement, it triggers something in my nervous system that puts me on overload and increases the severity of my Migraines.  I know that when you whistle you are whistling out of joy, but for me, all I hear is a shrill piercing sound that goes straight into my head like an spear.  I also know that it is frustrating to you when I can't sit in certain places in a restaurant because of where the music speakers are, and I know you find it embarrassing and inconvenient. However, if I sit with that multiple stimuli, there is no way I can even begin to enter into the fun and conversation at our table.  There are times when the littlest of sounds - chirping birds or crickets - make me want to lose my mind. In addition to having an overly developed olfactory sense, I also have olfactory hallucinations which cause me to smell cigarette smoke, smoke/fire, and poop which isn't there.

One of you told me that it was ridiculous that I couldn't drive because of migraines and that you would just do it.  I know it is a hardship for me to always be asking for rides, but I don't think you understand how Migraines cause me to totally lose my eyesight in the left eye (even though I've told you that) or that my reflexes are slowed down when I am having a Migraine.  It takes a bit longer to process things and to react accordingly which is dangerous when one is driving.  The thing I have hated the most about my Migraines is the giving up of my freedom and independence, but I could not live with myself if I hurt someone when I was driving impaired.  I hate having to ask for rides and, as a result, I frequently don't do things that I want or need to do. Over the past few years of being homebound, I've struggled so much with not asking too much of you and as a result frequently save these requests for taking me to the doctor which I know is frequent, but let's face it, not fun.  I also have to admit not understanding why those who are closest to me don't call me when they are going to the grocery or Target and ask me what you can get for me.  I know you go on a regular basis, and I honestly just need some help and that seems so easy to me.

One of the things that hurts me the most is that I who have always considered one of my greatest strengths my dependability and my desire/and ability to be there for people and to do for them simply can't do that now like I would like.  I know it is frustrating to plan things with me as I frequently have to cancel, so I think people have stopped asking me to do things and stopped including me. I also know that going places with me is difficult because I frequently can't last as long as everyone else because of my Migraines.  I really don't mind sitting out in the car or the lobby waiting for you - I just want to be a part. 

I feel so cut off from you all.  I feel like the very nature of our relationships have changed.  Some of our relationships have changed to ones that are more like care-takers than friends and others have changed to a distant and almost estranged one.  I'm not blaming anyone as this has been a drastic change in all of our lives.  However, I wish you could have a least a small idea of how deeply it hurts me; how much I miss the life I use to live. (I know it also hurts you to watch me hurt and there is a large part of me that wants to protect you from that.)  All the things that use to give me validation and purpose in my life have been lost in so many ways.  Whereas I use to receive accolades for what I did for a living and other things, I now rarely hear anything positive about myself.  I cannot begin to describe to you the profound grief and even humiliation that I felt when I had to leave my job and go on Disability - it felt as if a very real part of my being was being ripped away from me.  Some of you say how nice it must be to be at home all day and others wonder what I do all day. The bottom line is that I do whatever it takes to get through the day.

So, would you bear with me for a moment, and let me tell you what my experience with Migraine is?  Let me begin by addressing what is probably the most recognized thing about Migraines and that is pain.  However, I'm not talking about "common" pain - I am talking about boring, stabbing, throbbing, take my breath away pain.  My pain does vary in a given day.  At some moments my pain is relatively low and I would equate it to what I use to feel if I got a simple headache, but every day I also experience pain that is as if everything inside my brain is pressing against my skull trying to get out.  There was an old technique called treplaning where they use to drill a hole in a Migrainer's head to try to let out the pressure, and in those moments of excruciating pain, I think of how great that would be if it worked.  Sometimes I get lightening bolts or quick stabs like a knife in my head.  I pull my hair and hit my head against the wall to try to relieve the pain; I pace; I can't sleep (which sometimes means that I don't wake up until 2:00 in the afternoon which I know some of you think makes me lazy); I fight tears with all my might as they'll only make it worse; and I fight overwhelming anxiety that something truly catastrophic is going on in my head.  The only pain that comes close to describing the level of pain I experience in those times is when I had kidney stones that were so severe that they put me in the hospital for surgery.  And even that, wasn't as bad because I knew it had a treatment and an end.  Honestly another thing that made kidney stones more bearable is that people seem to understand the pain from kidney stones whereas they don't the pain of Migraines.  I have had lumbar punctures and nerve blocks without even flinching as the pain is just nothing compared to that of Migraines.
I have always been told by doctors that I have a high tolerance to pain, but I know I appear to be overly reactive to pain to some of you.  However, I'd like for you to consider what it would be like having an electrical storm going off in your nervous system every day.

In addition to the extreme problems with vision, light, sounds, scents, and multi-stimuli that I experience, there are also many other symptoms.  My left side goes numb and tingly, making me wonder if I'm having a stroke (which is of higher possibility for those of us with Migrianes).  I also experience aphasia, or the inability to say what I want to say.  Sometimes I mix up my words and other times I can't even find the words.  For one who use to travel and speak publicly on a regular basis and got great joy from it, this is so devastating.  I also experience chronic ringing in my ears and vertigo - I am frequently off balance and have difficulty judging distances.  Because I have such problems with light and eye sensitivity, I who use to read several books a week can no longer read; thereby losing one of my greatest passions.

I have much lower energy and endurance than I use to have prior to chronic Migraines.  It is so much harder to do normal things.  Bending over causes spikes in pain and dizziness.  Getting hot does the same.  Moving around too much also does the same.  As a result, everyday tasks are so much more difficult if not impossible.  I love and feel most comfortable in a clean and ultra organized home and now I sometimes don't want people in my home because it just looks so badly.  

I forget things frequently because of my migraines and have to keep copious lists.  I know I have frustrated you by forgetting things or repeating things to you and that you perceive it as nagging.  Honestly, it's generally just that something is important to me, and I don't even remember that I've said to you before.  

There are so many other things that go along with my Migraines - constipation/diarreha (not a thing I particularly like to discuss), a face that feels like its on fire, aching shoulders and neck, severe pain in my jaw and face, severe aching in my hand (which I totally don't understand), allodynia or sensitivity to touch that is so extreme that taking a shower can feel as if glass shards were hitting my head, congestion and sniffling as if I have a cold or sinus infection, a low grade fever, carbohydrate cravings, irritability that even I don't understand, red eyes that look as if I have conjunctivitis, fatigue and a number of other symptoms.
It seems like every time I turn around there is a new manifestation of my Migraines.

I've lost control of my life.  I've lost my independence.  I've lost my career.  I've lost a number of relationships.  I've lost a lot of my joy.  

However, there are many things I can do.  I can still love you and pray for you.  I still want to spend time with you - just having fun and playing - even though it means that I have to make concessions for my Migraines.  I still have passion for my career and can do things in that area if I had a schedule that would allow me to control my environment and arrange my timing around my symptoms.  I love the Lord and desire to serve Him even though I find it difficult, if not impossible, to go to the physical church (and it broke my heart when a minister told me I couldn't join the church I loved and supported because I wasn't physically there).  I am still me, and I want to be a part of your lives - I want to be a part of the joy and the fun.  You won't see me focusing on my symptoms most of the time, and because of that, you may sometimes think that I am just malingering, but if I focus on my symptoms, I lose hope and I can't afford to do that .  I cannot dwell on what is going wrong and that my doctors can find no preventative, abortive or even effective rescue medications for me.  I have been told by my doctors everything from that I am in the 10% of chronic migraineurs that are extraordinarily difficult to treat, to there is nothing they can do for me, to I must be an alien (lol).  I have spent thousands upon thousands of dollars searching for help for my Migraines.  I have endured the belittling of doctors who do not understand Migraines and the pain and side effects of untold tests and treatments.  Do you see how if I talked about that all the time that it would make me lose my will to live?  

However, the most important thing in my life is the victory I know is possible through my Lord.  The victory may not come in healing, but in how I choose to live this life I have, and I choose to live it with hope and small baby steps of success.  However, in my heart of hearts, I have to admit that the one thing I want more than anything is for you, the people I love the most, to just understand.  I don't want your pity - I want your support.  I don't want to focus on my disease, but I want you to know why I live like I do.  I have to control my activities, but I want to be a part of yours.  Migraine is not just a headache.  It is a disease that I have had for over 40 years now, but which has in the last five years irrevocably changed my life.  With your help however, my life can be a little bit more normal, more enjoyable.  Quite frankly, I need you to understand, to be by my side, to want to be with me and to understand what Migraines really are.

I am not here to accuse any of you, for I know that I am blessed with friends and family like that of which many only dream.  I love each of you so dearly, but I want you to understand what I do and live with because of Migraines so that maybe my life can regain just a bit of normalcy.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by


  1. Cyn-
    Wow! I know that writing this letter must have been very draining but, you are right, most of of us have no idea what every day is like for you. I miss you--your wisdom, your humor, your laugh and your heart for others. I get caught up in my little world and before I know it--months have passed- even years and I haven't seen my friend in far too long. I want to get together after I return from Argentina. But if we plan something and you have to cancel, we'll plan something else. :)
    Love you- D

  2. Darilyn, you are such a precious friend and I thank you so much for what you've written. I assume you are going to Argentina on a missions trip? I'll be praying for your safety and that God will really do a good work through you and for you. I'd love to get together sometime when you get back!! Love you!

  3. Amazing Cyndi. I hope those who you want to read this do and take what you've said to heart.

    1. I agree completely with Nancy. This is truly Amazing.