Friday, September 23, 2011

Vacation Handicap

George and I took a much needed vacation for eleven days! George had an actuarial conference for a couple days near our destination so we expanded the rest of the time into a much needed get away. We were so thankful to get away to a place that we both love and enjoy so much.

And we had a blast. Every day was soaked with love and enjoyment. Every second, we countered the intense difficulty of this year with a determination to be swept away in the joy of a place we both love so dearly. 

A few weeks before the trip, my Migraines and Fibromyalgia improved enough so that I could start working on increasing my stamina. I started walking on the treadmill five minutes a day on the slowest setting and after three weeks had worked up to twenty minutes a day, four days/week. After eight months of being bed bound and house bound, I thought, "Wow, I'm going to be okay for our trip!"

We knew we would have to bring my wheelchair as I was not up for the amount of walking required. But little did I know how much stamina I would need to simply sit in a wheelchair and be helped in and out. It is much more work than I expected. Every muscle ached...even my smile muscles. And unfortunately, the short two hour twenty minute airplane ride triggered my Meniere's. I was spinning all eleven days. 

Photo property of KLW
My body was in shock and so exhausted that when George went to his conference after we'd been at our destination only 36 hours, I slept for two days, just about all day. We were staying in villas just outside our resort's main lodge, but I could barely get myself to the resort to mail postcards. And when I was unable to make the walk to any of the resort restaurants for lunch (room service wasn't available at that time of day), I felt the bitterness of how dependent I was/am.

I was humbled. Not only did I need the wheelchair, but I could not do much of anything without it or my driver (George). I got to know exactly how to be loaded and secured on a resort bus, boat and monorail. About mid-way through the trip, I could barely get myself in and out  of my wheelchair without an enormous amount of help from George because of how weak I was and because my Fibromyalgia was flaring horribly. George actually fell between the tracks of a ride (Test Track in EPCOT) as he was helping me out, sounding off the ride's alarms.

Photo property of KLW
The last day before we flew home, I was unable to get out of my chair at all. We went to several shows and also on rides that allowed my wheelchair to go in the vehicle including Kilimanjaro Safari (photo on left), Buzz Lightyear Ranger Spin and Toy Story Mania. We also only used companion bathrooms where George could assist me.

No, it was not the "best" idea to continue to push through each day on little sleep with the amount of pain, disorientation, weakness, vertigo and over-stimulation that I was experiencing. But, I needed to. Did I mention that my immuno-supressed husband got a cold that lasted throughout? I'm not surprised that he got sick at the Happiest Place on Earth where so many kiddos and germs lurk. But he continued on, pushing me in my chair which bothered his arthritis as he was walking incredible distances. However neither of us questioned ourselves. We had an unspoken knowledge and agreement that the benefit of being there and doing what we could was so much more than the difficulties.

Photo property of KLW
Flying home was...different.  I could not pass through normal security screening because I had no strength to get out of my chair to walk or stand on my own. So, I a female officer got to know me very intimately as I was patted down extensively.  I had to be transferred onto the plane by being strapped (four belts) to a special chair that fit down an airplane aisle while two men carried me. I was unable to use the bathroom during the flight which was anxiety-producing (thank goodness I'd downloaded movies to my iPad as a distraction). And when we arrived at O'hare and they had to bring me out of the plane to my wheelchair using the special aisle chair. I cannot explain the humbling nature of it all.

Actually, it was more than humbling; it was humiliating. As soon as I was in my own wheelchair and away from the gate, I cried.

Our trip was so lovely, but there was no getting away from the limitations that have increasingly encroached on me. My view was mainly of people's rear-ends and children in strollers and I frequently had to ask George what was happening because I could not see. I had a fellow vacationer tell me "that is where the handicapped people go." I did NOT like being called handicapped even though I have come to terms with being called "disabled". I had a woman scoff at me as we were getting off a ride and say "I can walk better than she can." And she could..though I'm not sure why she felt the need to point it out as she was using a wheelchair herself to get around. Maybe because I am young? Maybe because if I put makeup on and a nicer outfit and have a huge smile on my face because I am  genuinely happy, I can look like I'm not sick?
Photo property of KLW
I took 4700 photographs on our trip as I am enjoying my new spankin' new DSLR. As I was looking through my photographs today, I had intentionally taken photos of all of the "handicap" signs that directed us everywhere. But, I also found something I hadn't done intentionally...photographs of handrails that look more like bars in the images. I did not realize how trapped I felt, even in this fantasy vacation with my best friend and love of my life. I had wanted to get away from it all, but as I cannot get away from myself, I cannot get away from my limitations.
Photo property of KLW
We had been to this destination on our honeymoon in 2006 and again in May 2010. Even though I had used a wheelchair much of the time during our last visit, I had walked some days and  it was sad to see how I truly could not do what I could do less than a year and a half ago. We had so much joy everyday and I hate that I'm writing so much about my limitations but that was just part of what we experienced.

Photo property of KLW
So even on a vacation that was intended to take us away from reality into a fantasy, joy and pain still coexisted. So this is my much needed vent, but what I will remember are the connection George and I had and the rejuvenation we experienced of our spirits.

Saturday, September 10, 2011

Migraine and Suicide: Links to Blogs

To conclude our series, here are links to blogs who have either written about their own experiences with Chronic Migraine and suicide or are discussing others' stories of Migraine and suicide. Always remember you are not alone and we are here as a community to support you.

  • Migraine and Suicide II by Heather at A Journey of a Migraineur is a discussion about a private conversation Heather and I had. She quoted me saying, "I want to live. But I don't want to live like this." She also discusses how depression is a disease and it is okay to be on medication for it.  
  • Signal Boost: Migraine and Suicide by Sharon at After Gadget is a post that reaffirms the need for the discussion of suicide as it relates to chronic pain. Sharon also discusses her own feelings of being suicidal at one point in her life.
  • About Suicide Prevention by Jeanne at Chronic Healing is a post where Jeanne shares what she learned in a class called safeTALK which stands for ‘Suicide Alertness For Everyone’/'Tell, Ask, Listen, KeepSafe.'  What she learned is a lot of information on how to help someone get the resources they need when they are suicidal. Great read for family and friends.
  • Miracle by Katharine at Healing My Migraines is a post from a couple years ago when Katharine was having some improvement in her anxiety and level of pain after a very difficult period. She discussed her feelings on how she had been at the end of her rope and didn't want to live in pain anymore.
  • Migraine and Suicide by Jamie at Migraine: Living in Pain is a post where Jamie shares a time when she attempted suicide and wound up in the ICU. She wants others who may have had a similar situation to know that having feelings in the darkness is nothing to be ashamed of and to speak out when you are feeling that way because you are not alone.
  • migraine kills by Grieving Mom at My Migraine Connection is a post by a member who's son took his life because of Migraine pain was not relieved and he could not find any hope. Take time to read the comment section as it is very moving.
  • Migraine, Stigma, Suicide, Stop! by Nancy Bonk at My Migraine Connection is a post where Nancy asks why aren't we stepping up as a community to fight for the research dollars we need as Migraine is the 12th most disabling condition in the US? A very emotion-filled post written after a man who was told he had to live with his pain took his own life. The point being that this is a deadly disease and we need to fight for it.
  •  Do You Ever Wonder? by Wendy at Picnic With Ants is a post from earlier this year when Wendy discussed a very difficult day she had and was very honest about how she felt.
I would like to say a special thank you to everyone who contributed to this blog series. Your effort has meant so much to me and I know will touch many many people. You are wonderful! All my love and support to you!
Fly with Hope!

Friday, September 9, 2011

Migraine and Suicide: Experiences From The Community- Perspective Determines The View

The following is a personal story from someone who is a Christian.

"I don't pretend to understand what it is like to carry the burden of chronic pain - like you do, like my sister in law the hospice minister does. I've got no first hand experience with migraines, but I have attempted suicide - as a Christian.  Too often Christians feel like they have to put a "happy face" on everything, and deny that anything is wrong - and we do a real disservice to a hurting world when we do.  Following Christ doesn't guarantee you a stress free, pain free, rich and happy life...and we need to stop telling people that it does, 'cause when they find out otherwise they get real disillusioned.  Our reluctance to be honest about our suffering also isolates us from those who would come alongside to assist and support us - if they knew what we were going through. 

My conversion experience happened at age 13, but I had little in the way of discipleship.  What I DID have was an overprotective, controlling, dominant father - and a mom who had died the previous year.  Roll the clock forward a few years, make me a hormone-filled undergrad at college, and finally give me some freedom - and the results were pretty predictable.  I found someone to lose my virginity to - and fall head over heels in love with.  When she eventually decided to leave me in order to marry a previous boyfriend who had been physically abusive to her, I fell off an emotional cliff.  Eventually, I had a long talk with God, and told him that I was ready to come home - now.  I wanted no more of the pain I was going through. 

Then I followed through with my plan and cried myself to sleep.

Waking up was one of the strangest experiences...I was both relieved and disappointed.  Eventually, I planned another attempt.  But before I put that plan into action, I ended up spilling my guts to a good friend of mine (my daughter is named after her).  She invited me to a prayer group that she was in - at the time, the "group" consisted of her, and the woman I would eventually marry.  To say that group changed my life is a something of an understatement...

I find myself amazed at all I would have missed out on down here, if I had succeeded in going home on my timetable.  Deep fulfilling amazing church...being used by the God I love - I had no idea of all He had in store for me.  We can only see so far with the tears in our eyes blurring our vision  - at those times, we just need to trust that our Father sees more clearly than we do."  

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Migraine, Suicide and Faith; What Does God Really Think When I Feel Suicidal

This post is written by a dear friend and Migraineur, Cyndi Jordan. Her compassion flows through her words and I am honored that she would be a guest blogger on this topic:

The subject of suicide is frequently a contentious topic among individuals of the Christian faith.  It seems to run counterproductive to all that the Bible teaches, and there are many who treat individuals with depression or suicidal ideation as if they have committed an unforgiveable sin.  Too often Christians with depression are made to feel that their depression is a sign of spiritual weakness.  They are told to “trust God,” “to pray,” and “to ask for forgiveness.”  Frequently the basis of their very faith is challenged by those who believe that a true believer would never even consider taking their life.

While it is clear in the Scriptures that our bodies are the temple of God (I Corinthians 6:19 and that it is He who determines our days (Proverbs 16:9), it is equally clear that “there is no condemnation for those who are in Christ Jesus.” (Romans 8:1)  We are dearly loved children of the Lord and while our depression and thoughts of suicide may grieve Him, they are not something that can separate us from the love of God.  (Romans 8:38 & 39) I believe that it is that sense of separation, of feeling not accepted for who we are and how we feel by God and by others, that causes further estrangement, isolation and depression.

For that reason, it is important that when we feel the most depressed and anxious that we draw near to God, knowing that He draws near to us.  (James 4:8)  He knows who we are and what we think and knows that we are but human, sinners, ragamuffins in need of a loving heavenly Father. (Psalm 103:14)  We come to Him, at all times - in need and in plenty; with feelings of desperation or of joy - as beloved children.  He does not look upon us with disdain, condemnation or disappointment.  He does not hold back good from us because we are behaving in what some may consider an unfaithful manner.  No, He regards us with love, compassion and mercy - the very things we need most from the people in our life and the church as well when we are suffering.  (Matthew 7:9-11)

It is not God who scoffs at sinners or has no mercy for those who are depressed and feeling suicidal.  In fact, the Bible has several examples of great men of God who at one time in their life felt that desperation and wanted to die.  Elijah, one of the greatest prophets, ran away to the mountains and there said “I have had enough, take my life.” (I Kings 19:4) Scripture says that in his weariness, he sat down under a bush and prayed to die.  How those words resonate with me when I am feeling most depressed - how many times have I said those very words!  I may not have sat under a bush, but I have withdrawn and just longed for it to all be over with.

As I read 1 Kings, I can visualize Elijah so despondent, begging God for relief, begging God to show Himself.  I see him being like me when I cry “God, if you are really God, take this pain away from me.”  Interestingly, Elijah also looked for evidence of the Lord - he looked for it in a powerful wind, an earthquake and a fire - mighty manifestations of strength.  And like Elijah that’s what I want, but also like Elijah, I find that God doesn’t come to me during those times with powerful healing or miraculous insights (although it is certainly within His power), but rather in the still quiet voice like Elijah heard.

I believe when I am most desperate God does not require anything of me, but to be still and to wait so that He can whisper in my ear how much He loves me, how He promises to get me through what I am experiencing, that He has a plan and a purpose for me in spite of my condition and that it is for good. (Jeremiah 29:11)  He does not rage at my disbelief, at my emotions, at my desperation.  He does not chasten or punish me.  He does not ask me why my faith isn’t stronger or tell me to pray more.  He just accepts me. 

There is so much freedom in that - freedom from the judgement, shock and disdain that many in the Christian community portray when the word suicide comes up.  There is nothing I can do to shock God or to separate myself from Him.  The Scripture is comforting when it says “we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are--yet was without sin.”  (Hebrews 4:15)  Jesus himself cried out “my God, my God why have you forsaken me? (Matthew 15:34).  Moses in Numbers asked God to kill him if life was going to continue the way that it was.  Jonah, because of the situation in which he found himself, said “Now, LORD, take away my life, for it is better for me to die than to live.” (Jonah 4:3) 

We are not alone in our feelings of desperation.  They do not make us a lesser person or a lesser Christian.  They do not prevent us from going on to doing good things and being a treasured and productive child of God (i.e. Elijah, Jonah, Moses).  Our desperation amplifies our need for God, our dependence on Him.  It also amplifies His amazing, non-condemning love for us.  Those who feel less than because of their suicidal ideation or are made to feel less than by other Christians or church goers are not listening to the voice of God as portrayed in the Scripture.  God never brings condemnation, only conviction, and with that conviction comes the love and the grace to make it through the dark night of our souls.  God longs to walk with each of us during that dark night of pain, of depression and to give us hope when things seem most hopeless.  

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Please read today's personal story, Perspective Determines the View.

Thursday, September 8, 2011

Migraine and Suicide: Experiences from the Community- I Want to Live! But I Don't Feel Like I Am!

The following is a personal story from someone who lives with Meneiere's Disease (this has caused her to have severe hearing loss over the last two years, with profound tinnitus, and disequilibrium or vertigo most of the time), Chronic Migraines. chronic pelvic & hip pain and bi-polar illness (which has been under control for 16 years).

"I think people with chronic illnesses are much more likely to think about, and attempt suicide. I have, twice. The first time was because I was undiagnosed with bipolar illness. Before I was being properly treated for bi-polar illness, it was a rough time.  One moment I didn't think anything could hurt me, the next I'd be stuck in months of despair where I couldn't imagine getting out of it.  I was involuntarily committed to a mental illness facility after that suicide attempt.  I know they often get a very bad rap.  But the facility I went to really saved my life.  I was there for 2 weeks, and I was amazed at how much they could help in such a relatively short period of time.  A lot of the help came from the other patients.  We had camaraderie, perhaps if we'd had that type of support before, we wouldn't have ended up there...but that's not fair.  We had medical issues that needed to be addressed, however, having the support of so many others who were in the same boat, was very therapeutic.

The last time was because I was so sick. I was so down. I felt like such a burden, and so useless. Finally, I reached the end of my rope. I locked myself in my bathroom and started to follow through with my plan. Luckily, my husband broke in the door and stopped me. He was devastated. I've never seen him in such a state. He was broken. I had not gotten to the point where I was in immediate danger. I began to see that he needed me, even if I wasn't "useful" in my eyes. It hurt me so much that I had hurt him. All I wanted to do was to relieve his burden. I wanted to make things easier on him. I truly felt like the world would be better off without me. But I was wrong. At least one person, would have been permanently hurt. When I saw the horror in his face, how he lost control...I had never seen my husband in that state, and never want to again. It pains me to say, that at times I still wonder. I just wrote in my journal this morning, that I still wonder, if the pain would stop, would it be better, would the noise stop, would I stop being such a burden...but, I would never do that to my husband ever again. Please, know, that I don't want to die. Really I don't. I want to live! But I don't feel like I am. I feel like I'm stuck between life and torture. I have to believe it will get better. My husband and I received a lot of help from counseling and we feel closer now, and able to talk more about my disability without guilt being involved. Because we were seeing a therapist together it made us stronger. We communicate better about our feelings about my disability. About everything."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to: Migraine, Suicide and Faith: What Does God Really Think When I Feel Suicidal

Migraine and Suicide: For Family, Friends & Caregivers

One in 10 suicides linked to chronic illness, study finds. Click on the link and you'll find an article about a study done in the UK that found just how at risk those with chronic illness are. Globally, we are suffering and we need support.

This post is from those of us who have Chronic Migraine and Chronic Pain to you, loved ones, family, friends and caregivers. Thank you for reading this post because it means you must care and that means a great deal to us. In this post, we want to tell you how we feel, why we need you and what you can do to support us. I have also included linked resources that you can use for your loved one in crisis.

When I asked the community to share what they would want you, family/friends/caregivers to know about why they sometimes feel suicidal, here are what three individuals said:

I sometimes feel like I'm at the end of my rope because of my chronic migraines because it's unrelenting. It has changed so many things in my life that I sometimes don't even recognize my own life. It has flipped my world upside-down, and there's no guarantee that things will get better. It can be very difficult to accept that my life has completely changed.
I would want them to know its not that we’re crazy or that we just have emotional issues. When you are sick and you don’t think you are ever going to get well again sometimes you want to make that sickness or that pain stop. Its not that you’re mentally ill. It is a matter of just wanting to stop the pain/illness.
When you have chronic, intractable migraine (and fibromyalgia), a loss of quality of life is inevitable, especially if you are young and in the prime of life. At my age, I am supposed to be building a career, saving money, having children, and moving about in the hustle and bustle of society. But I am not doing any of these things. I am stagnant. I have to say "no" to the majority of activities my friends go out and do, because even if I am not in pain at the moment, I have to carefully weight the consequences of my actions on what I might feel like the next day. As much as I love my friends, I think if they had just one 24-hour bout with migraine they might understand why I hesitate to put myself in a position to bring one on. Therefore, it cuts me to the core when I have to say, "I cannot attend your function", and it adds to the stress of having migraine because I feel as if I am a letdown. I am happy to know that people want me around, but it hurts that I know I'll pay for being someone's company. This disease silently takes things from you that you took for granted before. Things that other people do daily without thought. Migraine causes a constant battle within.I just want my friends to understand that I love them, but migraine has radically changed my life and in some cases it's changed me. I am not who I was 6 years ago. I am not in a good place. There are many days when I don't enjoy life and it's a rare day when I don't have to push myself to leave the house. This is not life. It's imprisonment.

When a person who has chronic Migraine/pain  is suicidal, that person cannot see a way out of the unending physical trauma that is happening to them. That they are talking about suicide or feeling like they want to leave this life is not a commentary on how they feel about you. In fact, their thoughts of suicide have nothing to do with you. Yes, it affects you, but in the moment our feelings are about ourselves.

Before I share with you the community's list of how they want you to respond when they are going through a dark time, please read the National Suicide Prevention Lifeline's What if Someone I Know Needs Help. There you will find some information on topics such as guiding someone who needs help online, how to be helpful to someone who is threatening suicide, how to be aware of the feelings that the person is going through. The following is what the National Suicide Prevention Lifeline says to do when someone is threatening suicide:
  • Be direct. Talk openly and matter-of-factly about suicide.
  • Be willing to listen. Allow expressions of feelings. Accept the feelings.
  • Be non-judgmental. Don't debate whether suicide is right or wrong, or whether feelings are good or bad. Don't lecture on the value of life.
  • Get involved. Become available. Show interest and support.
  • Don't dare him or her to do it.
  • Don't act shocked. This will put distance between you.
  • Don't be sworn to secrecy. Seek support.
  • Offer hope that alternatives are available but do not offer glib reassurance.
  • Take action. Remove means, such as guns or stockpiled pills.
  • Get help from persons or agencies specializing in crisis intervention and suicide prevention
Click here to find out common warning signs of suicide.  “What to do if you think a person is having suicidal thoughts” is a guide that will help you talk with someone you think might be having suicidal thoughts.

I had spoken with a friend for a few hours on the phone after she told me she was suicidal. I had supported her in many different ways, but she was not following through on getting help and I was very scared she was going to hurt herself. So, I decided to call the lifeline. The person on the phone supported me in supporting my friend. The lifeline was a vital resource for me at that time. Do not hesitate to use it. I was very relieved to get an outsider's opinion on the situation I was going through. If you think your family member or friend is in crisis or you simply need support, call the National Suicide Prevention Lifeline 1-800-273-TALK (8255). 

So, now I want to share with you the ways the community want you to know how you can help support them when they are feeling suicidal or close to the end of their rope.

Ways To Respond:
  • “Just be there for me.” 
  • “Just be there to listen."
  • "Ask: how can I support you?"
  • "Pay attention."
  • “I would tell others to make sure they express their love and support, but without any judgment.”
  • "Extend meaningful hope to the pain sufferer not trite euphemisms."
  • "We just need to know you care.  The words “I love you,” “I’d give anything to be able to help you feel better,” and “I’m on my way over” are powerful words.  There is great hope to be found in love."
  • “ Try to help the person in question realize they have a purpose, they aren't just a burden.”
  • “Try to talk me down lightly.”

 Things To Avoid:
  •  "Don't try to keep us from attempting only by saying you would miss us and you would be heartbroken. It makes us feel you are not acknowledging our suffering and that you think this is about you when it is not."
  • " Do not be judgmental of my feelings or actions."
  • “Do not make light of the subject no matter how many times you hear someone say they wish it was over, and they don't do anything. You never know when they may reach the end of that rope.
  • “Anything other than being supportive is probably not a good response.”
  • “I do not want them to freak out.”
  • “Don't go the, 'This is stupid! You know better!' route. That makes the feelings only worse."
  • "When someone is saying you're playing 'woe is me, people has it worse than you', that makes the feelings worse, because it brings up the thoughts, 'well others have it worse than me, than I'll prove I can make my life worse.'"
  • “Don't act like you know what I'm going through, unless you've been through something very similar."
  • "We who are in pain, don’t need to hear that “it’s going to get better,” “it could be worse,” or “just trust."
  • "Don’t try to solve our problems."
  • "Saying "don't say that around me" is terribly disempowering. If I trusted you enough to say that I feel awful and that I'm reaching out for your hugs or support, the fact that you shut me down means that I'm not going to ever going to feel the same way about trusting you with my intimate personal feelings again."
One community member summarizes this section very well when they said,
Do not freak out when the pain sufferer says “I can’t take it anymore.”  Don’t try to reason with them about how selfish they are or how much you’d miss them; just be there.  Try saying “Boy, I don’t know how you handle this - you truly amaze me by your strength.”  Also, don’t be afraid to use the word “suicide.”  It’s okay to ask if the individual is thinking about harming themselves.  If they are, form a “no suicide” covenant with them.  Be the person who will be there during the dark times - not to keep them safe - but to let them know they are loved and not alone.  You may not be able to take away the pain, but you can take away the sense of isolation.  Words don’t do it; presence does.
 If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

As a family/friend/caregiver, I recommend you read this very short post written on another site by a mother about her son called migraine kills.You might also read the comment section as it is very moving.

Please read today's post from a community member, I Want to Live! But I Don't Feel Like I Am! 

Wednesday, September 7, 2011

Migraine and Suicide: Experiences from the Community- When Living Seems Too Hard

The following is a personal story from someone who lives with Migraine with and without aura, Retinal Migraine, Fibromyalgia and Chronic Fatigue Syndrome.

“Yea though I walk through the valley of the shadow of death, it is not death I fear but living.”  These are words I wrote several years ago when trying to process my own desire to escape the pain and isolation in which I was living.  I use the word “escape” rather than suicide as I never really wanted to die, I just wanted to somehow escape the chronic pain and loneliness I was experiencing.  Some would call that desire “selfish,” I see it as desperate and, frankly, normal. 

About five years ago I began experiencing chronic daily migraines (rather than the “normal” two to four a month).   Having already exhausted all the resources for migraine help in my hometown over the years, I began to travel visiting migraine specialists around the country.  I began each of these journeys with great hope - sure that someone was going to be able to tell me what to do to manage the unrelenting pain in which I lived.  Yet time after time, I ran up against the fact that I have migraines that are “particularly difficult to treat.”  The Bible is quite right when it says that “hope deferred makes the heart sick.”

As a result of the pain of migraines and its accompanying symptoms, I had to leave the job I loved and found the social and familial framework of my life becoming smaller and smaller.  I became a virtual prisoner in my own home.  I was in pain, with no discernible  help for my migraines, feeling alone and not understood, and experiencing the death of my goals, hopes and dreams.  Pain is one of the most isolating conditions one can experience - particularly chronic, invisible pain such as caused by migraines or other illnesses that the world, in general, does not categorize as being catastrophic.  Yet, I believe there is nothing quite as catastrophic as being in pain and feeling like there is no hope,no solution and no understanding. Penney Cowan, founder of the American Chronic Pain Association, said “Living in pain is devastating, and not having others believe you is even more isolating.”   I don’t have to tell my fellow migraine sufferers how exhausting it is to have to “justify” your illness.  We don’t have cancer or a broken bone or some other syndrome that others relate to and understand the pain associated with it.  We often face individuals who believe that our pain is exaggerated or the result of our emotions.  “Chronic pain is an illness in its own right,” says Dr. Portenoy. “Patients seeking care for pain should be given the same respect as those with any other ailment.” (Both quotes are from Women’s Day magazine, April 1, 2011.)

As a mental health therapist, I have walked with many clients who felt desperate and saw suicide as one of their only options.  As an individual who suffers from depression, I have personally experienced that desperation and seen suicide as my only option.  Fortunately, I am one of the lucky ones who responds well to SSRI’s and have found an outstanding therapist myself.  Suicide hasn’t been in a viable option in my mind for well over twenty years; however, the desire to escape - to find any way out of the prison in which I live has become a regular companion.  How many times have I been in pain so intense that I just wanted to put my head through a window? How many times have the platitudes of caring family and friends made me feel like there was no hope?  How many times have I wished I just wasn’t me?

At this juncture, one may ask “how is that not suicidal ideation?” The only answer I can provide is that I have made a stalwart promise to myself and to others that suicide is not an option for me.  I do not wish to minimize the desire of those in pain to “just end the pain” by making this seem simplistic, for it is far from being so.  There are times when I am hurting so badly and feel so alone that I actually wish suicide was an option.  It simply is not."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to For Family, Friends & Caregivers

Migraine and Suicide: What Are You Doing for Prevention?

I have heard the phrase “suicide prevention” in the past, but never really stopped to consider what it meant.   Dr. Paul Brand, who wrote the book The Gift of Pain said,
You do not want to start weaving the parachute when you're about to (need it). You want to have been weaving the parachute morning, noon, and night, day in, day out. And then when you need it, it might actually hold you.
Suicide prevention is something that we must do every day as we all know too well the ups and downs that Chronic Migraine and chronic pain bring us. For me, prevention means having a routine in place that will support me over the course of time especially when things get tougher. Some prevention ideas discussed will be familiar as they were also mentioned as coping mechanisms as they are effective tools for both. However  we will be flushing them our as a prevention measure as opposed to just a rescue measure.

-In the post, What to Do When You're Close to the End of Your Rope, we discussed coping mechanisms. It might be a good idea to write down a list of coping mechanisms you find helpful so you can easily turn to it when things get tougher.

-Over the years, I have kept a ragged pocket notebook that I call my "Chronic Migraine/Pain Toolbox." Having a personalized booklet put together ahead of time is quite handy when I am having a close to the end of my rope moment. Inside its pages are the following:
  • inspirational quotes from books
  • encouraging things others have told me 
  • Bible verses 
  • lists of non-medication ideas to use when medication is not available (i.e. diaphragmatic breathing or taking a bath by candlelight) 
  • a letter to my husband on how to handle me when I'm freaking out from pain
  • a letter I wrote to myself.
    • This letter was from the self who had seen some improvement to the self who is scared and despairing because she is so ill. You can read the letter in my post,  Letters to Myself

-One of the coping skills we talked about was getting professional help. In my opinion, seeing a therapist on a regular basis, not just when you are in crisis, is a vital way to work through the emotional side of chronic Migraine and chronic pain. Sarah Gomez, PsyD from the Jefferson Headache Clinic in Philadelphia who contributed to the article A Third Space for Migraine Patients said:
The pain and isolation that migraines produce commonly rob migraine sufferers of the things they enjoy most.  This is tremendously taxing; managing both the symptoms that migraines bring with them, as well as what they take away is exhausting. In psychotherapy we spend a lot of time processing this complex experience, as well as exploring ways to counteract the clutches of the disease. 
I have been seeing a therapist since my Migraines/pain became chronic.  She has become part of my support system as I navigate the ups and downs of my chronic Migraines and chronic pain. Going to therapy has helped me work through self-worth issues that many chronically ill people face. I have discovered I am worthy and loved just as I am even if I do burden those around me and am not able to contribute to society in the way I wish. Chronic Migraine and chronic pain often affect every aspect of our lives and having someone to talk with about this is invaluable.  My therapist also makes makes home visits when I cannot drive to her office and I am aware there are therapists that do phone visits as well if that is what you need.

-Stay involved and active in the Migraine/Chronic Pain community.
  •  Finding out how you can be involved/become an advocate will help you to feel better knowing that you are doing something positive for the future of your disease or pain condition. If you have Migraine disease or other headache disorder, check out the Alliance for Headache Disorders Advocacy (AHDA) to see how you can get involved. Join the mailing list and participate in action alerts. The Migraine Research Foundation is another great place to get involved.
  •  Follow the current research, read articles or simply read blogs that summarize the research for you. If you are informed, you will feel empowered about your disease.
  • Reading blogs of those who struggle with similar chronic illnesses will help you to commiserate, collaborate and may lead to personal connections. Through my connections on forums, and blogs, I have found friends who I email and talk on the phone with regularly. They are like family to me and because they know me in the better times, I trust them to support me in the worse times.
- Dr. Bill Young a headache specialist of the Jefferson Headache Clinic wrote an article I highly recommend called A Third Space For Migraine Patients. His article was not scientifically based, and was great food for thought. He discussed how how chronic Migraine/pain can become all consuming and he suggests that it might be helpful for patients to diversify their interests. More specifically he suggests chronic Migraine patients find what he calls a "third space" or an activity/space outside of Migraine that one finds to be meaningful.  Dr. Young said,
Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed. 
Photography is my third space sactuary. When I am composing a photograph, I am completely drawn in and all thoughts of how I am feeling drift away. There is a joy and enjoyment I cannot describe and I can feel my spirit take a refreshing breath. This seems to be the purpose of a third space. Dr. Young recommends to "keep trying until you find something meaningful." The Migraine patient he referred to in the article had a third space of singing once a week at synagogue even though it made her pain worse temporarily, it was beneficial for her emotionally in the long run. Perhaps your third space is poetry or writing letters or drawing or dancing or knitting or volunteering. Whatever it is, finding a third space seems to be a good way to help prevent becoming overwhelmed.

The following prevention ideas were put together by a community member. They are incredibly insightful. Items discussed include making a commitment to yourself when you are not hurting, providing yourself external ways to remind yourself why you chose to live and have hope,  making a covenant with a safe person, and normalizing your desperation.

"First, as one who desires to escape pain through “whatever means,” it is important to establish boundaries -  that you make an unerring commitment to yourself when you are not hurting.  I have found that in the midst of pain and loneliness, there is no room for clear thinking.  For this reason, I sat down and wrote a list of promises to myself when I was “in my right mind.”  When I am going through a difficult time and my thinking is driven by pain, I pull these promises out and read them to myself in order to remind myself of what is truly important to me.

Second, provide yourself with an external means of reminding yourself why you choose to live and have hope.  In my case, I personalized a number of Scriptures and laminated them so I could read them during difficult times. One of the ones I wrote was “My Romans 8: 37, 38”  “In all things I are more than a conqueror through Him who loves me.  For I am convinced that neither pain nor depression, loneliness or insecurity, self-doubt or condemnation, rejection or ridicule, people’s opinions, finances or personal productivity, the ability to be involved in the church or the community, anxiety or an inability to meet earthly standards can separate me from the love of God in Christ Jesus my Lord.”  However, for those for whom Scripture is not a source of hope, you may ask a good friend or close family member to write a letter to you outlining why you are important to them and what you contribute to the world around you for you to read when you need to.  (A note to those who are writing such a letter: your job is not to talk them out of suicide but to state for them the “truths” of who they are as you see them.”)

Third, make a covenant with a safe person.  I personally have several people who when I am going through a particularly difficult time, I text the word “pray” to them.  They don’t text me back asking me what is going on, they simply text back that they are praying for me and that they love me.  It keeps me grounded - connected to others - so that I don’t feel so isolated in my pain and desperation.

Fourth, normalize your desperation.  It is normal to feel desperate when you are in so much pain.  It is normal to want to do almost anything to get out of pain.  It is normal to fear what the future holds when today is so bleak.  BUT remind yourself that you have been in this place before and that you made it through it.  It wasn’t easy - it may have been the hardest thing you ever did, but you know that your pain isn’t a sign of weakness.  In fact, it is a sign of your strength.  Not many people can live day in and day out like you do and emerge victorious.  The victory isn’t in overcoming the pain, but in learning to live with it - to make it through the next flare-up - to continue on when many would give up.  I frequently say to myself “of course, I’m feeling desperate - who wouldn’t in this kind of pain or when they feel so alone.  This is a normal feeling, and I’ve made it through it in the past and I will again in the future."

Do you have any prevention ideas you'd like to share? Please post in the comment section!

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Please check out today's personal story from a community member: When Living Seems Too Hard.

Tuesday, September 6, 2011

Migraine and Suicide: Experiences from the Community- Greater Appreciation

The following is a personal story from someone who lives with Chronic Migraines and Fibromyalgia.

"For me, the chronic pain and how it affected my life was very depressing. The worse things would get the more depressed I would get. I never really sought help for the depression and when it was offered, I refused. I felt like I just had to stay strong and would do it on my own. After I had been in and out of the hospital for migraine treatment several times, I knew the doctors didn't really have any more ideas on how to treat me and they didn't understand why I wasn't responding to treatment. I felt hopeless like they weren't going to help me get better. As that hopeless feeling kept growing I kept getting more and more depressed. I didn’t know how to get out of the hopeless helpless depressed state I was in. This is when I would start to think, “if I don’t have any more options, I am either going to live like this the rest of my life or I’m going to stop my life.”

Suicidal thoughts would come into my mind, but they weren’t so severe that I was going to act on them. I would try to find hope in things, such as if a migraine doctor appointment went well or if I had a good day or so. But the more hope diminished, the more depressed I would get, and I would start to feel more helpless. Then I started having more serious  suicidal thoughts.

After my last hospital stay for Migraines, I was still in more pain than I thought I could handle. They had tried everything they had thought of to try and I felt completely hopeless.  I got out of the hospital thinking I was going to be constantly ill.  And I thought I couldn’t do it. I didn’t feel strong enough to keep doing it.

When I got home from the hospital feeling this way, I also had to face the family issues at home. The combination of the stress of fighting with family, and thinking that there was no other way to treat my chronic Migraines was so overwhelming that the suicidal thoughts I had before hit me hard. It was a matter of “I’m done now.” I decided then to try to end my life.

My parents intervened and got me to hospital. By the time I got to the ICU (Intensive Care Unit), I was at risk for a heart attack, kidney damage, liver damage and brain damage and the doctors were worried about all of these. They questioned if I would wake up or if I did, I could have the damage that they were worried about. I spent four days in the ICU.  When I first started waking up, I was surprised I was alive. As I was more conscious, I became more thankful I was alive and that I had survived with out any damage. I wasn't meant to die at that time. I knew for a fact that God wasn't ready for me to come home yet, I still had purpose in my life and He had saved me. The depression did not get much better. But I knew that there was still a purpose and that gave me a little bit of hope. I realized I didn’t want to die. I thought that I did but I truly didn't want to die. I still had something left to do with my life.

It has now been nearly a year and a half since the attempt and the hospital stay. I have definitely struggled since I was released from the hospital and behavioral health unit. I can’t say it has been easy, it is like a roller coaster ride. I start feeling hopeless sometimes and that can affect how depressed I get. But finding and having hope will lift the depression and that will get me through. It is definitely up and down. I have had bouts of the depression and when I did, I thought about how I attempted before and how maybe I could complete. But then I would remember I made it through for a reason. I was given that second chance and I didn’t want to take it for granted. The second chance gives me hope of a better life ahead of me. I remind myself that there was still a purpose for my life. This would be enough to bring me out of the the depression or suicidal thinking.

I definitely changed after the attempt. I know now that it is okay to reach out for help. After the attempt, when I was suicidal again, I reached out and called my best friend for support. I got into therapy. I didn’t just keep the suicidal thoughts to myself because I knew that I could reach the point that I would act on them again. I knew I needed to have help to get out of the way I was thinking once I got to that point. I know to reach out now, and I don’t want to attempt suicide again. But life hasn’t been all about fighting off suicidal thoughts. Surviving my attempt gave me a new appreciation for life. I still struggle with chronic pain and depression, but I cope with it better now. I know that I can still do something with my life and that keeps me going."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to: What Are You Doing For Prevention?

Monday, September 5, 2011

Migraine and Suicide: What to Do When You're Close to the End of Your Rope

Sometimes as chronic Migraine and chronic pain sufferers, we find ourselves not necessarily in crisis or immediate danger, but close to the end our rope.The photo of the stuffed panda represents how I feel when I am close to the end of my rope. I see myself exhausted and vulnerable. Its sparse fur that stands on end, reminds me of how on stressed out I feel.    

In the place where I am close to the end of my rope, I have had enough of chronic Migraines/pain and feel quite frazzled. In that moment, I have difficulty coping with it all and I feel stuck. The truth for me and for others is that when I am close to to the end of my rope, I might not be thinking about suicide as an option, but I need a way out of the place I am in because being close to the end of my rope could turn into being suicidal and being at the end of my rope.

However being close yet not at the end of my rope means I have at least a small amount (even if it is a tiny bit) of hope enough to think there might be a way to improve my situation.  In the past, hope was just a wish that my situation would improve because I didn't know how to turn that hope into reality. And when you are close to the end of your rope, you are often too exhausted to try.

Let's talk about hope becoming reality. When we are close to the end of our rope, we need to rely on coping mechanisms to support us. Coping mechanisms will be the things that will help change our state of mind.  Remember, if you're close to the end of your rope, you're probably pretty exhausted, so your ideas should be things that you can reasonably do. The following is a list of ideas came from some community members (whose responses are in quotes) and myself.

“Call your doctor. See what can be done/changed. Tell your doctor something has to change because you are having a hard time coping with the pain.”
  • A couple months ago when I was pretty hopeless about the severe state of my fibromyalgia, I called and asked my doctor if he had any non-medication ideas for me. He did and much to my surprise it made a huge difference in my pain and thus my mood! Often times even a small amount of change can lift my spirits about the state of my chronic pain.
“Get professional help. If the first person you see, doesn't seem like a good fit, seek out someone else. I can't stress enough that not only the person with the illness needs a neutral party to talk to and help, but also the caregiver needs help too.”
  • Getting professional help may be seeking out a therapist or even a psychiatrist to evaluate if you need anti-depressants or anti-anxiety medications to help you through this phase. I see a psychiatrist and both my husband and I have been seeing a therapist jointly and individually for many years for support in journeying through chronic pain.
“Journaling has been literally my life saver a couple of times.”
  • Journaling helps me to express and work through my feelings. Screaming on a page often feels very good. 
“Dressing up to make myself feel better.”
“Use your faith....I write bible verses daily”
  • I have found great comfort in prayer. For me prayer is a practice of quiet mediation of listening and connecting with God. Whatever your faith practice is, perhaps reconnecting with it will center you in times when you feel you have come close to the end of your rope.
“Go to a mental health group.”

“Going for a walk.”
  • Sometimes even when I am unable to walk around the block or on a treadmill, I will do some simple stretching or gentle tai chi which calms my mind and body.
“Start talking to friends and reaching out for support to get past hard times.”
  • This summer I was in such a difficult place health wise that my husband, George, was having a difficult time keeping up with household tasks. A friend who lives close-by was persistent and started getting our groceries for us. I wrote about it in a post called Being Chronically Ill and Asking for Help
-Sketch or draw. Sometimes I'm quite literal in drawing the things things that are bothering me and sometimes I take a black or red crayon run and it back and forth across the page. Below is an example of some art I did about how I physically felt when I was having a difficult time.
-Reach out to others in the chronic illness community. Often I feel much better after talking with someone who has Migraines or another one of my chronic conditions because they “get it.” When you are close to the end of your rope there is no substitute for having someone validate your experience because they have lived it too.

-Though these websites are not meant to be lifelines like the National Suicide Prevention Lifeline. Below are a list of some websites where I find support. I specifically seek out the “forum” sections and join the groups pertinent to my health conditions because that is where I meet people with my conditions, ask questions, support others and am supported myself.
                Health Central/MyMigraineConnection
                Chronic Babe
                Rest Ministries
                Chronic Illness Support Groups on Facebook

Do you have any ideas of what you do when you are close to the end of your rope that you'd like to share? Please post in the comment section! I would love to keep adding to this list.

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, go to: Experiences from the Community: Greater Appreciation

Sunday, September 4, 2011

Migraine and Suicide: What To Do When You Are in Crisis (Suicidal)

This week, September 4th through September 10th is the 37th Annual National Suicide Prevention Week. September also happens to be Pain Awareness Month.  In honor of National Suicide Prevention Week and Pain Awareness Month, I will be continuing the series I started with the post Migraine and Suicide. Please check in every day as there will be posts with contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide. As I mentioned in my previous post on Migraine and Suicide, my goal is to decrease the stigma of the discussion of suicide so that we might be more supportive in the chronic Migraine/chronic pain community on this issue. So let's get talking. 

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255). Click on this link to the National Suicide Prevention Lifeline’s website where you will find information on why you should call, who should call, who and where you are calling, what will happen when you call, and how you can call. It even gives numbers for TTY users for those who are deaf.    

“Anyone who feels sad, hopeless, or suicidal; family and friends who are concerned about a loved one; anyone interested in mental health treatment and service referrals” should call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).   I have called this crisis hotline for a friend before and the people I spoke with were very kind, non-judgmental, understanding and helpful people. They talk to people who are suicidal or having suicidal thoughts every day, so if you feel you need to call, please do so right now. They are there to help.

In preparation for this series, I reached out to the chronic Migraine and chronic pain community for input. I will be sharing with you a combination of their thoughts and my own.

The overwhelming consensus of the community is that when you are in crisis (feeling suicidal, at the end of your rope,  depressed), find someone who you trust and contact that person. If you feel there is no one to call, please refer to the above section and call the lifeline

One community member expressed beautifully what I think many of us feel at one point or another about our suicidal thoughts: 
When I'm at the end of my rope, I feel defeated and ashamed. I hate feeling like I've let the chronic pain "win." I feel ashamed for even have a fleeting thought of ending things.
But, do not let such feelings keep you from reaching out. Remind yourself that having suicidal thoughts can be common among chronic Migraine and chronic pain sufferers.  When you have them, it is vital to reach out to someone. Find a trusted person and start talking and keep talking. Keep talking until someone hears you. One member said, “My best friend is my ears and shoulders most days.” When you call the hotline or your trusted person, be honest. One member said when she calls her trusted person, “I talk about my feelings.”

Are you feeling suicidal? Tell them. Tell your trusted person what you need. One community member suggested that you might ask someone if they could come stay with you for the day or for the night if you feel that might be helpful to get you through this difficult period. One time I had a friend ask me to call a behavioral hospital for them to ask questions for them because they didn't feel comfortable doing so at the time. Per my friend's request, I even set up an appointment for them to see a therapist that same day. You never know what is possible if you reach out.  If you have a psychiatrist or a therapist, this would be a good time to reach out to him/her.

Check out the National Suicide Prevention Lifeline website. It has a lot of really helpful information for how to get help. Remember, you are not alone.1-800-273-TALK (8255)

For the next post in this series, go to: What To Do When You Are Close To The End of Your Rope.