Thursday, July 28, 2011

Just Float

From the age of six until I left home for college, I had a swimming pool in my backyard and as I've always enjoyed swimming, I felt like one lucky girl. There is something about being in the water that makes me feel free.

I was just laying on my couch feeling like I'm sinking. The weight of my health issues are heavy. They all are simultaneously pitching fits: Migraines, Chronic Daily Headache, Fibromyalgia, Meniere's disease, IBS and my most recently diagnosed seizures. And as I just started yet another medication that did not agree with me, I have been pretty much weighted to whatever piece of furniture I am on with wicked dizziness, nausea and sedation. Lately, I have found a head space to get through all of these things. I release the frustration, the sadness, the anger, the helplessness and focus on what I can do: like Wearing a Turquoise Dress. Today I'm wearing a grape soda purple one!

Over the last few months, I've been slowing going through the book, Little Ways To Keep Calm and Carry On: Twenty Lessons For Managing Worry, Anxiety and Fear by Mark A. Reinecke, PH.D. I highly recommend it. There was one lesson on influence and control. It helped me see that perhaps I may not be able to control a situation, but I usually can have some sort of influence even if it is very small.

Earlier, I had a moment of panic. Today, I had to make a second preventative medication change in a week and the enormity of everything my body has been going through hit me and I panicked.  When I panic, I know I'm going to drown in fear and depression. And that simply is not an option.

As I was laying here starting to panic, the thought came in to my head: "Just float."

There is a theory that people who are heavier tend to float easier. I'm feeling pretty weighed down, so this should be easy. I'm gonna relax and focus on floating (not sinking) my grape soda purple dress!

Tuesday, July 26, 2011

Wearing the Turquoise Dress

I am terribly moved by the response I have gotten to my July 19th Migraine and Suicide post. So many people have been so brave in sharing their stories with me. It brings tears to my eyes to see what a beautiful caring community we have. I feel excitement because I feel such purpose and passion and cannot wait to write more. Every now and again, I pick up my laptop, write a few sentences or do some research and then have to put it down.

My limitations are keeping me from thinking straight and I must wait to work more on the posts for series for which I have so much passion. My mind is scrambled by the sedation and dizziness from a new medication, my body is fried from the constant stabbing nature of Fibromyalgia and a relentless Migraine and I am exhausted from the frequent seizing.  So, instead of pushing against the limitations, I'm not going to struggle.

I was sitting up in bed this morning, trying gather the courage to spend some spoons (energy) on taking a shower, which I had not done since Thursday because it had been too painful and costly. I was about to grab for my khaki shorts off a straight backed wooden chair, but stopped. I wandered into our second bedroom and pulled a dress out of the closet.

"Why not?" I thought.

After my shower, with the spoons I had left, I spent some on Tai Chi to calm my spirit, and stretch my body. I called my dad because it his fifty-seventh birthday today and spoke with both of my parents via speaker phone for thirty-eight minutes. With only a few spoons left for the rest of the day, I have been laying on the couch coping with what my body throws at me the best way I know how. And I'm wearing my turquoise dress. The last time I wore it, I was walking on a beach in Corolla, North Carolina. Looking down at the short flowing dress, memories of relaxation and calm flood over me.
During these days, when I am so sick by any and all of my health conditions, sometimes all I can do is mark time. If you are disabled in any way, you probably know what I mean. Some days, you simply have to wait for the hours to pass while your body goes through the disease process and then while it recovers. With drive and a purpose, this is the ultimate challenge.

So today, I want to say that I chose to live...not just exist, to live. I may be marking time, but I am still living. To me, living is embracing the right now for what it is and choosing to not let it defeat me. I may not have a choice in the war inside my body, but I do have a choice about how I live.

Today I am living by wearing my turquoise dress. What is your turquoise dress today? What are you doing to live despite your circumstances?

Tuesday, July 19, 2011

Migraine and Suicide

A private conversation with my friend, Heather, inspired both of us to speak out about Migraine and suicide. Heather wrote blog post,  Migraine and Suicide II, which was a follow-up post to one she wrote a few years ago on this topic.  As a result of our conversation and much thought, I have decided to do a series here on Fly With Hope about Migraine and suicide. Heather and I both realized that more needs to be talked about than is being talked about in regards to Migraine and suicide. In this series, I plan on discussing what to do when you are feeling suicidal, and ideas of what to do when you are close to the end of your rope. I also hope to share personal stories from those who have gone through attempts, and advice from sufferers for family, friends, and caregivers. And finally I hope to discuss faith and suicide.

Suicide is largely stigmatized and judged in our society, which is why I think we do not discuss it openly very often. If one talks about having suicidal thoughts or feelings, or if one actually attempts suicide, that person is looked at as “crying out for help” and often is ostracized or preached to.  The general population often does not know how to connect with someone who has had these feelings and experiences. However, quite often those of us with chronic disabling conditions that involve chronic pain are brought to the point of thinking of suicide, contemplating it, making plans for it, attempting it and even completing it. We're not crazy. We're in pain. We are suffering. I would guess that at one point or another most every chronic Migrainuer/chronic pain sufferer has thought “I want to live; I just don't want to live like this.” I’ve said this to myself, to George, to my doctors, to my counselor, and to my friends.

My goal is to try to help decrease the stigma of discussion of suicide so that we can be more supportive of each other in the community on this issue. Let's face it, most of us have felt so depressed by our condition that we have thought of suicide. If you have not, you are part of the very lucky minority. For those of us who have, if we come out and say, yes, we have felt suicidal, yes we have gone through depression and despair, then those who are feeling depressed and suicidal will realize they are *not* alone! And we can form stronger bonds with each other and be there to support one another when we are depressed, in despair and perhaps even suicidal.

So, hear me say, yes, I have often been so depressed that I did not want to live anymore because living with chronic pain is so overwhelming and consuming. Yes, I have thought about how I would do it. Yes, I have thought that the world would probably be better without me. Yes, I have thought that my pain would never end and the only way to end it was by stopping my life. Yes, I have thought about completing suicide. Period. (Though not end of story.)

If you are a loved one or friend of mine, that may be difficult to read, but it is the truth. And it is the truth for many many many other people who suffer from chronic Migraine and chronic pain. This leads me to my other goal, which is to create awareness so that those who do not suffer from chronic Migraine/pain can understand just what it means to feel like we do and why we get to the point of feeling like we don't want to live anymore.  I want friends and family to understand that we aren't crazy and selfish, but that in times of endless pain and despair, we feel stuck with no way out. We are tired of having this burden.

Losing hope seems to be a common thread for people who consider or have thoughts of suicide in general. We lose hope that tomorrow, or even the next moment will be better or different than the one before. We feel powerless to change what has been going on for one hour, one day, one month, one year, five years, ten years, ___ years.  We feel as though there is no way out as the pain feels as though it is unending and all encompassing. Because of chronic Migraine/pain, we have lost who we were, who we want to be, our dreams, our desires and the list could continue at length. It is like being in the middle of the storm and not being able to see an end. It is as though pain has a grip on our eyelids and all we can see is its misery in front, in place and behind.  I know that when I am in the middle of a bad spell, I get so depressed that I cannot see the that the storm will end and the sun will come out again.

We do not want to die. We just do not want to live the way we are living. We fight to live in so many ways: attending endless doctor visits, taking piles of medications, doing trials of complementary therapies, doing a complete change in diet,  participating in support groups, having a stock pile of ice packs, making heroic efforts to exercise, finding methods of distraction, reading research and connecting on blogs. We fight to have hope. We fight to find strength in each other, in a higher power and in ourselves. But sometimes, we do not have the strength and the burden feels too heavy and we just do not want to live this way anymore. Don’t judge. Don’t judge yourself if you’ve been here. Don’t judge us if you haven’t.  We don’t need lectures. We need love and support. We need to love and support each other; we need to love and take care of ourselves.

I look forward to sharing this series with you and hearing your feedback. My hope is that we will grow together and that through our discussion, we will not feel like this is an unacceptable or strange topic. 

Migraine and Suicide Series is currently underway. Please check out the following posts:
In the meantime, a great article to read if you are feeling at the end of your rope is an article by Teri Robert, Migraines and Feeling Hopeless. If you are in a difficult place right now or just want to talk, please reach out or call a family member or friend or check out the National Suicide Prevention Hotline . Or call The National Suicide Prevention Lifeline toll-free number, 1-800-273-TALK (273-8255), which is available 24/7, can be used anywhere in the United States, and connects the caller to a certified crisis center near where the call is placed..

For those who may be concerned about my own well being after reading this article, please know that I am in a good place right now and not suicidal.

Would you like to share your story?
-Please post in the comment section. Many people read this post and would benefit from hearing that they are not alone! Please note, I will not publish comments that give detailed descriptions of suicide attempts. But feel free to discuss feelings and experiences.
-If you are a blogger and want to join in on creating awareness and support in our community by writing your own blog post on Migraine/chronic pain and Suicide, please post the link in the comment section so that I might share it! Feel free to reference this post as well!

Friday, July 15, 2011

Being Chronically Ill and Asking for Help

Seven Star Farms organic plain vanilla yogurt with fresh dark sweet cherries in a bowl is what I had for breakfast.  I haven't had such a fulfilling breakfast in months and months. The freshness of the cherries and the goodness of the yogurt felt so delightful to my body. There is something about eating such simple delicious food.

In May 2010, I started seeing a nutritionist and started this program called LEAP. My blood was tested individually for the 150 most common foods in the American diet to see if I was sensitive to them. I went on an extreme elimination diet and now only eat foods that my body was not sensitive to. Apparently, the foods I am sensitive to were triggering Migraines! Currently, I do not eat gluten, processed sugar, processed food period, soy, or corn among other random food items. I do not eat fast food and can only eat at a handful of restaurants which means all my food has to be homemade. When I started this food plan in 2010, I was much healthier and felt well enough to cook for every meal. Once 2011 rolled around and I was not feeling well, I resorted to George's cooking. If you know George, before he met me he had never used his oven, stove or microwave. So cooking *my* food was a challenge for him. And when things continued to get worse for me health-wise, George had so much on his plate he was unable to cook for me anymore.

We found two restaurants that have gluten free/allergen practices, which means they use separate cutting boards, utensils, parts of the kitchen to prepare food for people with allergies. So, for months we've been alternating between restaurants for our meals. And our fridge has been empty.  Why? We were on survival mode. When one is on survival mode, one has a very narrow viewfinder.

A friend who lives a block and a half away from us has been asking to help for a while. Recently she emailed me and offered to grocery shop among other things. I spoke with George and we realized that we really need help. It is a difficult place to be. George and I met volunteering at a food pantry. I never really realized how difficult it was for the clients I worked with to come in for food. I knew from talking to them it was hard, but I never really understood.

When I was growing up and when I was working, I loved to be the giver. I was in the helping profession, I volunteered and it filled me up. Ever since October 2005, it has been hard not to be able to give in the way I want to give but it has more so been a humbling experience to need others' help. George sometimes holds me up on the toilet or helps dress me when I am too weak or dizzy to do so myself. He also drives me everywhere as I am unable to drive. These are a few common examples of how I depend on him in our daily life. My life requires that I look to others for help...usually George or lately his parents. It is exhausting feeling like a "needy" person. Chronic illness means you require more than the regular person does and that is difficult to accept.
Part of having so many needs that one cannot fulfill themselves makes one feel like s/he is lacking something or that something is wrong with him/her. I know this is not the case, but not being able to take care of one's own basic needs would affect anyone's self esteem. Sometimes being chronically ill makes me feel chronically needy and I hate that. I'm not sure if it is hard for me to accept help or if I'm just so tired of having to be helped or a combination of the two that has kept me from really reaching out. As humans, we were made to be in community with each other with a healthy balance of give and take. I see it every day in my chronic illness community. Even though we all often are depleted, we make an effort to reach out to each other as much as we can...especially when someone needs us for support, encouragement or just to be listened to. And they are there for us when we need support. It is a beautiful interaction.

So, why is my fridge full of fresh fruit, yummy veggies and meat ready to cook today?! All because my dear friend was persistent in asking me to let her help us and because I said yes. A lot of people say "Call me if you need anything" which is extremely thoughtful and kind,  but as the person that needs help, I wonder, what exactly are they willing to do? Walk my dogs or clean my toilet? When someone is specific and persistent about how they can help and what they are willing to do to help, it really helps the person who needs the help to accept the help. It also helps if the person who needs the help, (me), let other people help her. I wish I could express to my friend how much it means that she would take care of me and George in a way we are not able to take care of ourselves right now. It is a beautiful thing. Truly, one of the bests gifts I could ever receive

Wednesday, July 13, 2011

Deep, Full and Reverberating

I grew up dancing and the last two years of high school was in color and winter guard. So much of dance is stretching. In color/winter guard we had an exercise at the end of our warm-up routine where we would lay on our back, flex most muscles by stretching our arms and legs away from our body and then relax and simply lay there in a relaxed state.

In biofeedback, I learned how to focus on a set of muscles and relax them. You'd be surprised how much you are tensing yourself up until an electrode taped to that muscle is giving a tone that says "you're too tense" and it won't shut up unless you relax yourself enough to bring it below a certain threshold.

I had an MRA today. It is like an MRI, but looks at the blood vessels in the brain rather than the brain itself. If you've never had the pleasant experience of an MRI or MRA as I have...too many to count actually, you are missing out, my friend. In the background is a whirling machine going round and round. You lay on a moving table (like a moving sidewalk, but better!) that draws you into this huge machine. When on, it makes noises that are so loud your whole body vibrates. I could feel what part of my head or neck was being imaged by how much that part of me was resonating. They don't call it magnetic resonance imaging (MRI) or angiogram (MRA) for nothing. Per the online dictionary, resonance means "The quality in a sound of being deep, full, and reverberating" which may not be the definition when technically describing an MRI. But in an experiential definition, it fits quite nicely.

The insanely loud vibration flowing through my body felt like when you hit a very low note on the piano very hard over and over again. And I happened to be the piano key that was being hit. I was trying to imagine I was getting a deep tissue massage, just with a really angry therapist. As the resonance changed, the frequency and way it sounded also changed. At one point, it sounded like a tractor continually being started inside my head. And yes, it is so loud, you wonder why they bothered to give you ear plugs and put headphones with music. Haven't they ever heard of bone conduction!? It is laughable that you might hear even a moment of the calming music.

Unfortunately I have a Migraine today that did not respond to any abortive or rescue medication I threw at it. No, not a headache where you say "it hurts...ouch." I mean a Migraine: complete nervous system dysfunction, empty energy reserves, nausea that feels it might bubble up to vomit at any moment, the weight of a mountain crushing me, oh yeah and headache pain too.  I didn't have a choice to postpone this thing as my second neurologist (yes I have two) is looking for a possible TIA or aneurysm given my current symptoms. 

I took some valium so that I would at least be calm during the torture otherwise known as MRA, but it didn't kick in until two thirds of the way through. So what do you do when your body is revolting and you're being assaulted by resonance? You tense up and panic a bit. At least I did.  And then I remembered those stretches we did in dance and color guard. Though I couldn't really move, I thought of each muscle in my body and paid attention to it. What was that muscle saying to me? Though the assault didn't change, I did and was able to handle it a bit better. 

When the MRA stopped and I was waiting for the tech to come out from behind her window and detach the elongated ecru football mask that was keeping me to the table, in my earphones, the "Mission Impossible" theme song was playing. I didn't think that was very funny. We're going to find some answers. I believe it...mostly.

Wednesday, July 6, 2011

It Takes A Village

My in-laws arrived last Monday June 27th and stayed until this Tuesday, July 5th. They arrived earlier than we anticipated to give George and I a hand as I have started to have seizure-like episodes the last few weeks. I did not know how behind we were in running our lives. My father-in-law went to the grocery store no less than eight times as we had barely any eatable food in the house; he mowed the lawn, made meals, did dishes, vacuumed the house, and fixed a curtain rod that was falling down. And my mother-in-law helped him in doing about ten loads of laundry. We really have needed assistance.

George and I have a hard time realizing when we are sinking. I think we both know that we are struggling for air, but we are in such survival mode that neither of us thinks to call for a life raft. All we can think to do is to tread water and keep going.

George and I joined a couples small group from our church almost a year ago. When we first attended, I was doing so much better. Since then, my health declined and I have only attended a handful (maybe four) sessions. George has tended a few without me. Because of chronic illness, I rarely get to spend time with people and people I newly meet usually shy away from me because they don't really understand my life. But not this group. This group has overwhelmed me by showing love to someone they barely know.  And the best part for me is that they realize that George needs support too and when he comes alone to group, they are supportive of him which makes me so happy.

I am in the middle of finishing thank-you cards that I started two months ago for when people supported us in many ways as I was recovering from my Endolymphatic Sac Decompression Surgery in April. Friends and one family member, my brother's wife, made meals for me for two weeks straight which is no easy task as it is difficult to cook to my meal plan. A long time church friend who had just given birth about a month or so earlier made me a meal! One of my friends from Purdue, who now lives in Seattle, asked her mom if she would make a meal for me because her mom lives within 30 minutes of my house. Her mom, who I had only met once in person, cooked several meals for me! And a friend I know only from the internet who also has chronic Migraines sent me homemade allergen-free brownies from Seattle, Washington!!!! I was overwhelmed with love.

The other people who cooked meals for me for two weeks? Every couple in my couple's small group made a meal (or several). These were not family or even people who knew me very well, but people who have kind and thoughtful hearts. They reached out to support George and I when we desperately needed it.

One of my mom's high school friends and another internet migraine friend sent stuffed animals. My paternal uncle sent a movie, other friends I know in real life and who I know solely from my internet Migraine support group sent cards (one friend mailed one each day of my recovery), others sent notes through my CarePage, a handful of people texted George to tell me they were thinking of and praying for me, a close friend of mine texted me every single day of my recovery, my parents sent love in tangible ways through flowers and gifts, my sister in law phoned and my parents-in-law stayed for a week during my surgery doing all of the household tasks that needed to be done. 

It is so hard to ask for help because it feels like we are in constant need of help lately. But every time someone has reached out their hand or heart to support us, we have felt so loved! I thank God daily for those people who care enough to care for us when we don't have the resources (time, energy, health, emotional stamina) to take care of ourselves.