Finding Safe Shores From Suicidal Thoughts

By Mia Maysack, PNN columnist

When you have lost or almost lost loved ones to suicide, it changes you.  

My first experience with this happened at a young age and I took it very personally, even though it was an intimate, personal decision that didn't involve me. I guess that is one of the things that hurt most about it.  

Time passed, life was experienced and as my health conditions worsened, I found myself on the stone-cold ground of rock bottom -- which granted me a bittersweet comprehension of the temptations to end never-ending pain.

Years later, someone I cared for took her own life, after secretly enduring the late stages of terminal cancer. I’d witnessed that kind of suffering before during my days working in hospice care. This further reshaped my mind around the concept.

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Of course, none of us want to lose anyone, especially in a way such as this, but the question does remain.  Which could be considered more “selfish” -- someone eliminating their life or someone else not wanting them to?

“I want to leave this earth because I feel as though I just can't do it anymore. It truly has nothing to do with anyone else. I am solely human and have reached my absolute breaking point.  Ultimately, I make my own decisions -- though it’s impossible to comprehend the ripple effect my actions will have on others.”

“I don't want you to leave this earth because I care so much about you. I know you feel as though you cannot do this anymore, but I am here for you and have a difficult time understanding why that isn't enough. I would do anything to ease your suffering. There are others who care and need you, so stick around for their sake.”   

The dialogue may as well be night and day, two entirely different realities.  Both lack consideration for the other on either end of the spectrum.  

Some pain sufferers may not have even one support person in their lives who they can turn to when the going gets tough, yet many seem to think the best way to deal with suicide is by not talking about it. They fear that by discussing it and making it real, somehow that will trigger chaos and we'll begin dropping like flies once the seed has been planted. 

The intent of this article is the exact opposite.

Recently I took part in a class where this topic was discussed in a small group session. To my left was a person who had been in pain their entire life. They were over it, pun fully intended, literally in the process of orchestrating a move to someplace where assisted suicide is legal. 

To my right was someone also in pain, who was squeamish about the subject and could not begin to relate to it.

Then there was me, a splash of irony right there in the middle.

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Not too long ago, I took a mental health day at a local beach along Lake Michigan. When I am able to swim, my skills are strong. But as I approached my targeted distance, weather conditions shifted and I was both pulled under and pushed back. It was as though I'd been swept into a riptide and under current at the same time.  

At this point, I was exhausted and in low temperature water far longer than anticipated. Swirling thoughts crashed into my mind, much like the waves that had begun to cover my face. If I'm not able to move into shore I will die.

I've made it through worse, and there's no way this is how it's going to end-- not without a fight. So I powered through the water at full force until I felt as I could no longer – which is when the tip of my toes could finally touch the sand bar.  With a touch of hypothermia and major shock to the system, I made it.     

This is everyday life with chronic pain and illness. The emotions can submerge and escort us to the very edge of sanity, a tsunami that can swallow us whole and leave us fighting for every breath. Sometimes these ailments are much like anchors on our feet, shackling us to inevitable trenches of darkness and gloom.    

Many who can relate to these experiences are traumatized by judgmental stigma, so it's important that we acknowledge it is not only understandable but also normal to feel defeated. 

Observing these feelings as opposed to just absorbing them is a way of co-existence. The relationship with oneself is critical. At some of our lowest points, it is within us to choose the direction of our sails and head to safer shores.   

When navigating the treachery of these waters, our pursuit of quality of life against all odds presents itself as proof that we can make it through this and that we're in it together. We just gotta Keep Our Heads Up!  

If you or someone you know is contemplating suicide, PLEASE REACH OUT 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Constant Daily Companion

By Mia Maysack, PNN Columnist

I've got a companion everywhere I go. The wants and needs of this little bugger consistently require that I prioritize it before myself. It tests my boundaries, my patience, as well as my sanity.

I cannot eat, sleep or even use the restroom uninterrupted. This results in a consistent flow of tailored accommodations to make life easier for all involved. Temper tantrums are not only a daily occurrence, but a humble reminder that I am operating on a clock outside of my control.

I'm not discussing a child. I am referring to my chronic illness.

Migraines and my other ailments wake me up throughout the night, demanding attention. We all know how this works. No one gets any rest until the situation settles down. Pain is a constant companion who must be catered to.

Today, for example, I woke up to what felt like a pitchfork making its way through my cheek and out through my left eyeball.  Grabbing my face out of reflex -- as if somehow that'll ease the discomfort -- I rocked myself back and forth until the severity lessened.

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My entire body still feels the aftershock of that attack, but it's only the first of many that'll transpire throughout the day. I know enough to recognize this as a warning.  My brain injury is now triggered, turning an everyday 5/6 on the migraine scale into a solid 8/9.

The impact on my physical body is severe due to the heightened sensitivity of my nerves. Getting up from a sitting position gets harder by the day. At times it is not possible for me to stand up straight or navigate stairs. Sometimes I can barely walk.

There is overwhelming nausea to the point that even breathing seems to aggravate it, so no food or drink remains inside. This causes further complications, as malnourishment and dehydration only worsen things. The dizziness gets so severe it hinders my eyesight.

Despite the fact I am on no drugs whatsoever, I feel “out of it” to the point that all I can do is write because I'm unable to verbally speak.  

If you're so sick, how can you type?  Lowest brightness. Special glasses. I document this so the world can understand and because I am currently on bed rest.

It doesn't take long for the darkness to creep in, with special guests anxiety, grief, stress and panic. Despite how much it hurts, keeping my mind busy is imperative. So I write.  

What I'd really love to do is rest, but it hurts to close my eyes. And even though quality sleep is what my body needs most, it further heightens my head pain.  In other words, the self-care that has been my saving grace actually worsens things.

I'm not a violent person, but if someone suggested a Tylenol or something like it, I'd have to fight the urge to use my last ounce of energy to punch them in the face.

No work was done today, meetings were cancelled, my dog didn't get a walk and I am barricaded in a blacked-out room. Another rescheduled dinner date with the girls, unable to answer phone calls or messages, couldn't run errands or get any chores done. The world continues to spin without me.

Missing out on life and feeling the weight of disappoint is a crippling side effect of all these symptoms. With broken hearts we mourn the lives we've lived and who we once were.

I have always been the one to take care of everybody -- the nanny, teacher, nurse. Now I struggle just to keep up with what's going on internally. As if that’s not difficult enough, we have to fight to be taken seriously or even believed. That is unacceptable.

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Scoring Goals With Your Goals

By Barby Ingle, PNN Columnist

When it comes to living with chronic pain and illness, the way we motivate ourselves and achieve goals can change. I know it did for me.

There are two types of goals: mastery and performance. Before I had a chronic illness, I was performance oriented. I was wrapped up in demonstrating my competence and abilities, especially when it came to my job. Suddenly that was not possible anymore. I had to adapt, change and learn how to master by goals if I was going to manage the chronic pain portion of my life. That’s where I am now.

Knowing someone’s goals helps us understand what motivates them and predict if there is a likelihood of achieving and sustaining their goals. It can also help us decide if we have a similar goal that can be worked on together, if we should partner with them or if we should move on to someone else.

In a doctor-patient relationship, if a doctor can’t help you achieve your goals with the tools and resources they have to offer, then it’s probably time to find a new doctor.

Performance oriented goals (also known as ego goals) are characterized by the belief that success is the result of superior ability. Performance oriented individuals seek to outperform others and demonstrate their ability.

When patients are working to complete this type of goal, they’re often concerned about how they will be judged relative to others. An example of this would be a patient who wants their doctor to love them the most and call them their “best” patient. They are competing against other patients in a game with only one winner.

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I believe mastery goals will prove to be more effective in the long run. Mastery goals are also known as learning goals. They are goals where the person is focused on learning, mastering tasks, self-improvement and developing new skills. An example of a master-oriented goal would be organizing your medical records.

When a chronic pain patient masters a skill at their own pace and level – not competing with others --- it increases their resilience, quest for knowledge and enjoyment of life. One of my favorite quotes is “Winners don’t always win, but they never give up.” When we become mastery goal setters, we can accomplish more without societal pressures and take our time knowing that we will make mistakes and its okay.

Setting a mastery goal starts with taking a moment to think about what you want to accomplish over the next few weeks or months. Is there something you have been wanting to try? Something that will take you longer than others who are healthier? Are you up for that challenge?

Ask yourself what you want to learn. Then make it a learning goal. You do this by being specific. Don’t just say, “I want to organize my medical records.” Do you want your records in notebooks, on a computer, a USB, or in your patient portals? Do you want to update or correct your records” and send copies to your doctors? Do you want to start from today and only do new records or go back and organize everything?

Remember, your goal should be achievable in a few weeks or months. Otherwise you are setting yourself up for failure. Decide on a goal that is attainable. What past skills do you have that can help you out? Think through your goal to make sure it is realistic. Are you able to work on multiple goals at the same time or do you need to break this one down further to make it doable? Think about your current abilities and how they will help you achieve your goal.

How will you measure your success? Decide at the start how you will measure your progress. Try to organize five pages of medical records a day or do whatever you can. On some days you’ll accomplish more than others.

Ready to “goal” for it? Share in the comment section below what your goal will be in 2019. Sharing your goal can help you stay motivated. I wish each of you well on your goals and success in accomplishing the activities you set out to accomplish!  

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

I Thank God for Opioid Medication

By Carmen Littizzio, Guest Columnist

I was born with a rare genetic defect called Arnold Chiari Syndrome, which blocks the flow of cerebral fluid and causes pressure to build in my brain. I had brain surgery to treat it in 1999, when I was 44 years old.  

During this surgery they cut off a portion of the skull in the back of my head to make more space for cerebral fluid to flow. Lack of fluid in the brain and spinal cord causes intense pain for me from the waist down.  At times I’m not able to walk and have painful electrical sensations that are torturous.

Nineteen years after the surgery, I still suffer from high pressure headaches, chronic leg pain, thigh and buttock pain, and other symptoms. The high cerebral pressure has also caused other problems, such as retinal detachment in both eyes, vomiting, vertigo and vision issues. 

In 2008, when I was 53, I developed a crowding in my spinal cord the same as I had in the brain and had to have a spinal cord decompression. They put a titanium plate with four screws into my back to hold it all together.

This operation was so intense that for days after the surgery, I just wanted to die. It was a living hell.

I survived with the help of morphine, but eventually went back to my old pain medication, which consisted of Neurontin, Topamax, Elavil and Diamox -- all in very high doses.

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In 2009, my body started shutting down because of those meds and I was unable to urinate. I had a permanent catheter put in and all those medications were stopped. I started taking Percocet for pain. After 4 months, I began urinating again and never wanted to go back to those other meds. 

I was told of the dangers of long term opioid use, but decided to risk it for some quality of life. My other choice was to sit in a wheelchair for the rest of my life, be able to do nothing, and still die young because of being so sedentary. 

I am now 63 and next year it will be 20 years since the brain surgery. I take a time released OxyContin in the morning and evening, and oxycodone for breakthrough pain and the headaches. 

I am entering my senior years, but still walking on my own and enjoying my children and 5 grandchildren. I don't know how much longer I will live, but I feel like I’ve won the war. What war? The war for quality of life. I thank God for opioid medication. I have never been high or abused my medications. 

I feel very bad for those that abuse narcotics or overdose.  But why should I pay the price for their inability to use self-control? We don't take alcohol off the market because we have alcoholics and drunk driving.

There are many people like me that have chronic pain and illness, and we are paying the price for those who abuse. It’s not right and not fair that we should be made to stop living because of their issues.  Nobody has the right to choose for me. 

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Carmen Littizzio lives in Maine.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Grieving a Former Life

By Pamela Jessen, Guest Columnist

Once upon a time, there was a woman named Pamela. She was a strong, vibrant woman who worked as an operations administrative assistant for a company called FGL Sports, which operated a chain of sporting goods stores in Canada. Pamela took care of the administrative needs of the director and senior management team. 

Unknown to these people, Pamela lived with fibromyalgia and osteoarthritis. She did her job so well that she was able to keep these illnesses hidden for a long time, but they gradually started to get in the way of her work. Pamela eventually had to leave her job and go on permanent disability.

That was really devastating for Pamela because work was her life! She loved everything she did, from organizing training meetings and corporate functions to keeping her boss’s life on track. 

Once she was no longer working, a lot of negative feelings started to dwell up inside Pamela. She started feeling depressed, angry, sad and lonely. These were natural responses to having a chronic illness, but it was also frustrating to have to deal with them on top of not actually having a job to go to.

Pamela felt herself getting more depressed and sometimes it was easier to just stay in bed and sleep rather than get up and face life. She knew this wasn't good, but there really wasn't any reason to get up anymore.

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Well, of course, that woman was me. It was a difficult phase of my life, as work had always been my passion. I was an administrative specialist in retail support for most of my career and I loved what I did. Every day was a treat. Unfortunately, my body just couldn’t keep up with me. The pain and exhaustion that goes along with fibromyalgia and osteoarthritis took over my body and I had to surrender to it. There simply was no other choice. 

After some time, I took a chronic pain management course and started feeling better mentally. This course explored the various stages of grief we go through when you experience a job loss because of illness and disability, and I realized that was exactly what had happened to me. I had been grieving. 

There are five stages of grief: denial, anger, bargaining, depression and acceptance. The instructor asked us what we had to give up in our lives because of chronic illness. He had us make a list and to really think about what was on that list. Mine, of course, was my job and the volunteering that I loved to do. 

I knew going back to work wasn't going to happen again, but I was sure there must be a way I could use my volunteer skills on my terms. Then one day I noticed an advertisement in my local paper for an organization called Patient Voices Network in British Columbia and it looked perfect for me. The group was looking for volunteers who could be the voice of the patient when health care providers needed that voice in their engagements. I attended an orientation session and before I knew it, was attending my first assignment! I loved it from the start and have been an active participant ever since. 

Currently, I am the co-chair of the Oversight & Advisory Committee for Patient Voices Network. I also sit on the Clinical Resources Committee for the BC Emergency Physicians Network. 

It’s amazing how getting involved again in something you love can bring the grieving process full circle to acceptance. I realized that I had given up a lot because of fibromyalgia and osteoarthritis. But by accepting my new limitations, I actually gained a whole lot more.

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Pamela Jessen lives in Langford, British Columbia. She has a blog called There Is Always Hope, where she writes about living with invisible illness.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Stay Engaged Socially If You Are Chronically Ill

By Barby Ingle, Columnist  

It is so important to stay active with your social life when you are living with chronic pain or a disabling chronic condition. It is so easy to isolate ourselves, which can lead to an increase in anxiety, depression and frustration.

Work at not isolating yourself from friends and family. Here are a few ideas that my husband/caregiver and I use:

For Patients:

  • If prayer is helpful, keep doing it
  • Keep exercising (or start)
  • Look for support wherever you can find it
  • Maintain a healthy lifestyle
  • Socialize as much as possible
  • Take in good nutrition
  • Remember your caregivers are going through similar challenges

For Caregivers:

  • If a patient is grouchy or depressed, don’t see it as an attack on you but as a reflection of their pain
  • Learn as much as you can about the patient’s condition and the available medical options
  • Remember the patient is not doing this on purpose and is going through many challenges
  • Try not to take a patient’s anti-social behavior personally
  • Try to avoid being either too babying or too harsh toward a patient
  • A patient may feel less guilty if the burden does not always fall only on you. Try to find others to help with their care.

For Both of You:

  • Discuss options with a loved one when they are ready to talk about them.
  • Join or form a support group. This may be other family members or friends. This will allow you to take a break.

I believe that human connection is so important. When we connect with others and when we have support, we cope better, our pain levels don’t flair as often, and many other health benefits kick in.

We are meant to interact and be a part of society.

I have worked with many chronic pain patients over the years who isolated themselves. Either they or their caregiver came to me asking, “How do I get past this depression?” or “How do I get past all I have lost?”

One woman, who became a good friend over the last 10 years, was injured in her early years of life. She didn’t realize she was isolating herself and that she had stopped maturing psychologically or connecting with others.

Slowly and over time, she changed her patterns of social interaction, concentrated on her feelings, and practiced better daily living (posture, nutrition, stopped smoking). I encouraged her and her caregivers to be more social and pay more attention their feelings. She is now a social butterfly, both online and offline! 

I am also aware that social media or negative online support groups can be very draining when you don’t put up limitations and pay attention to your energy levels.

Find a good balance in life whether you are the patient or their caregiver. Remember you too can have a more meaningful social life that can make a difference for you and everyone around you. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network. 

7 Tips for Peace and Calm in the Busy Holiday Season

By Ellen Lenox Smith, Columnist

When the holidays are upon us, we tend to go into overload. Our minds are filled with all the things that have to get done. Maybe it’s presents to buy or make, meals to plan, company to prepare for, or packing for travel away from home.

We get so busy wrapping, cooking, cleaning and planning that, before you know it, your mind is spinning. If we aren’t careful, we get so wound up and tired that we can easily slip away from enjoying and experiencing the meaning these times with family and friends should have for us.

For those of us living with chronic pain and illness, it can also unintentionally cause a setback with our health. Life is difficult enough already without adding holiday stress to it.

Take the time to protect your health and learn to make it a priority among all the other things you need to take care of.

Here are seven tips to put peace and calm back into your life, while still enjoying the holiday season:

1)  Do your best to stick to your normal routine. Be honest with yourself and your body. If you are too tired or have too much pain, do what is best for you. There is nothing wrong with “not feeling up to it.” Give yourself permission to cut yourself that break.

2)  If you have chronic pain or illness, share with people that really want to know the truth. Many friends and family really don’t understand what you are coping with, possibly due to distance. Maybe you have had little contact, they don’t know how to approach what is happening with your life, or maybe they have chosen to ignore and not support you. 

It is a painful thing to experience when family and friends slip away. But in time, you will find others living with pain and illness that are more understanding and compassionate. Try to find that network, and learn how to live with and someday forgive those that don’t know how to be around the “new you.”  It will someday be their regret for their lack of compassion. Remember, there are many people out there that could use your friendship. Consider reaching out to others in need.

3)  Attempt to simplify your life to prevent the exhaustion many of us experience. One way our family has accomplished this is to no longer buy presents for each family member. A few years ago, we began selecting the name of one person and buying a present for them and no one else, except the children in the family. This had to be the most relaxing decision added to the holiday! The pressure is gone, and we now get to gather and just enjoy being together. 

This year, we have decided to take this idea one step further. We're donating the money that we would have spent on that one person to some person or cause that we want to help support.  We will share, when we all gather together, what we chose to do with our donation. We are all looking forward to hearing each others' choices. 

4)  Being with family and friends can be both wonderful and stressful. Try to make sure the conversations stay on a positive track.  When the topic appears to be getting into testy waters, try to sway the conversation away from negative topics. 

We have all had to calm down and regroup from the stress of the election, so try to steer away from anymore negative talk, blame and judgement. The Today Show even suggested that if you are the host, to set the rules and explain that this is a calm gathering. Consider designating a separate room if someone needs to talk politics. 

We have all experienced finding out that people we love and respect did not vote as we did. It can be a trial to hold onto these relationships, when there are dramatic differences of opinion we didn’t necessarily expect to find out about. We need to accept those differences and still appreciate the good in each other.

5)  If you don’t have a lot of space for overnight company, then be honest and provide them with suggestions nearby where they can stay. You want to enjoy your company and not end up resenting their presence. They could still join you for meals and activities, but provide you some much needed rest and quiet when they step away.

Share the responsibilities. There is no reason why each person can’t help bring part of the meal. Don’t take on so much that by the time your company arrives, you are really too exhausted to enjoy them. Maybe you could consider making some dishes in advance and thaw them out before they arrive. That can be your secret!

6)  Try to create calm in your home. Consider playing soft music to fill the air. That can be very relaxing, along with scented candles. Consider asking guests to put their electronic devices away or even collect them, so you can focus on each other and not those screens. There is plenty of time to catch up on messages and postings later. Let this be the time to truly be together.

7)  Make a list of things that come into your mind, in advance of the gathering, of things that need to be done that can help make things go more smoothly. Many of us living with pain get “brain fog” and can easily forget. I find this simple task takes the stress off me, knowing that I will read that list and remember all the things I need to keep me safe, medicated and protected.

Being with family and friends can leave us with wonderful memories. But exhaustion, caused by pushing and pushing yourself, ends up deleting the fun. Those of us living with chronic pain and illness can’t afford to set our health back by pretending all is just fine.

Rest, make simple plans, share the responsibility, and learn how to relax and enjoy. You won’t regret it.

 Happy holidays!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.