Seedlings growing up from the soil.

The 'Greatest Gift' That Gives Me Hope as I Battle Chronic Pain

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Last night my husband Eric helped me outside, bundled me in the wheelchair and wheeled me about four houses down the block. Other than little trips to sit in our front bench or back deck, this was my first foray into the outside world in seven days. So you can imagine it was glorious.

The world of evening spring grabbed us in a bear hug.  The embrace of reunited loved ones.

It’s rained a lot the past few days: the street smelled like spring’s perfume. It turned the trees hanging above us a brilliant beautiful emerald, a green that evokes long ago memories of my Catholic school teachers telling my child self that green is the colour of new life on God’s earth.  

It all comes back to me so clearly now, on these days I spend much time in bed, willing pain away. I stare darkness in the face, want to scream it down. I want my life back.

The darkness recedes, memories push through. I am back in my second grade Catholic school classroom. Sunlight floats in through the hard metallic window. Endless sunlight. No pain. Only hope and promise.

My stubby 7-year-old fingers push a hard wrinkled brownish bean into a dirt-filled Styrofoam cup. I wait on the promise of a small green bean plant. If it grows, I’ll have a gift to give on Mother’s Day. I learn hope as I wait for the moment when the first small green shoot leaps out of mere dirt toward the sun, like a prima ballerina born for the stage.

Ahhh memories. These days as I’ve slid, as if down a terrible playground’s slide, through pain and disability, the memories are more precious than I knew memories could be. How is it that in a time of physical loss I learn just how precious life is? That what a gift there is in the lives we live? That ordinary life is nothing short of spectacularly miraculous?

It makes me kick my heels into the slide. Makes me pull myself with all I am back up. Against the darkness. Toward the light.

Birds chirp their springtime concerto. The sun warms my face, even as evening wanes. I love that in this part of Canada at this time of year it’s still bright so late in the day.

Our walk/ride ends; the green trees dip down, wave good bye. Grasp my spirit in a “see you soon” hug. Eric returns me and the wheelchair back home.

We pass the little wheelchair accessible garden I began planting a few weeks ago. I was feeling pretty good just a few weeks ago. It is a beacon to where I hope to return.

I point out to Eric: a small, tiniest of tiny little green plant has poked up through the soil! This is sheer delight — whether in a second grade classroom or to a life-aged, pain-battling mama.

“No,” Eric says. “Look again.”  He lifts the pot close up so I can see. And I do see… so clearly.

All over the pot are tiny little green points. They are minuscule, some barely bigger than a pinhead. Too small to be called seedlings. Or shoots. Barely plants, experiencing their first ever taste of sunshine and spring air. Their first taste of life.

And my heart discovers. Sometimes life is hard. Hope seems faint. Pain and darkness seem to win. But those little shoots, tiny as they are, are victory embodied over darkness. They fight pain and herald life.

New life. Green life. The greatest gift of all.

And my heart says thank you.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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To Anyone Who Has the Power to Help People With Chronic Pain

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There are those of us who simply can’t just bury our heads in the sand.

There are those of us who are depended upon.

There are those who can’t ignore the pain because they live with it every minute of every day with no way to turn it off.

There are those of us who care and want to turn it off.

There are those who had some relief with opioids and narcotics but now are being deserted, alienated, marginalized and forgotten.

There are those of us who keep fighting, advocating and reminding those who choose to ignore the cries, sobs, screams and pleas of the person with chronic illness and pain’s need for help.

There are those of us who bear witness to the pain, who cannot ignore it. It is within our hearts, our homes, and is all-consuming in our worlds.

There are those of us who after the long search for answers, treatment, empathy and action from those with power to make change, to protect those in pain who can’t advocate for themselves, can only sit on our hands and watch while our children, spouses and loved ones writhe, cry, sob and scream with pain. It is too disheartening for those of us.

There are those of us whose lives have been halted, dreams unfulfilled, lost and forgotten. No joy. No hope. No life.

There are those of us who are now just too tired. Too tired to even bury our heads in the sand.

Where are those others?

There are those who turn their backs, who can’t or don’t bear witness, perhaps because it is too painful — too painful to even contemplate.

There are those who believe the problem will go away… just ignore it, choose not to believe it. It is easier to be angry and accusatory: This can’t be so, it’s all in your head, you are a liar, lazy, a malingerer, being over-dramatic. It’s easier to believe this than the truth: Agony is real and is tormenting someone, someone you may love or just someone… one of those people.

There are those who are ignorant, who don’t understand, who don’t have a capacity for empathy.

There are those who simply can’t handle the truth and so must ignore it, deny it and wait for it to go away.

There are those who will disappear until it goes away or until they themselves finally do. After all, it’s sad. Who wants to deal with that?

There are those who can put their head in the sand. If living and dealing with a loved one’s chronic pain is not in their immediate world, and sometimes even if it is, as is the case of extended family or friends, they may choose to ignore, disbelieve, or wait for it to go away. “Are you better yet?” No. Chronic illness and chronic pain doesn’t just disappear. Neither does the patient’s soul and need for love, support, and compassion.

But, they are “those” people, not you. You, the doctor, politician, neighbor, friend, and relative can choose to ignore “them,” demoralize and deny them their cries, for help. Or, you can pull your heads out of the sand and demand humane treatment for the chronically ill from our legislators, congressmen, senators and governing regulatory agencies. Chronic pain survivors must not be denied access to opioids and narcotics that have been used to afford them their only relief, if only minimally, in daily pain.

Those people are not drug-seeking addicts. Those people are patients!

Patients, not addicts! They deserve to have relief while further research and development of better pain management alternatives are sought and advances in cures for chronic illnesses are made!

There are those of you who have the power to do something!

Hear my plea, I beg, from those of us who find ourselves alone.

I can’t bury my head in the sand.

I bear witness to the pain.

I am one of those people.

I choose to help.

Which one of those people are you?

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5 Ways I Cope With My Undiagnosed Pain Condition

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Coping with an undiagnosed pain condition can be extremely difficult, but there are five ways I try to cope while waiting for a diagnosis.

1. The main way I try to cope is to stop my mind from going into overdrive and overthinking what the cause or diagnosis could be. This is much easier said than done, since not knowing what is causing so much pain can be terrifying for me, but it’s vital to try to keep this to a minimum, otherwise, I would be constantly scared and obsessing.

2. I keep notes of anything I think is important, such as what level my pain is at different times, what affects my pain (such as exercise, activity or rest) and any other symptoms I notice. This means when I go to doctors’ appointments or to see specialists, they have all the information I can give them, so they have the best chance of finding out what is wrong and how to help me.

3. I try to rest when I feel exhausted or when I’m in a great deal of pain. This can be very frustrating when I want to just get on with things, but it’s important to allow my body to rest when it needs it.

4. When I’m in a lot of pain, I try to distract myself from it as much as I can. This is pretty hard to do as the pain is always there, but rather than just focus on it, I try to focus on anything else: my work, my writing, seeing friends, spending time with my pets, spending time with my husband or watching a film. Anything that will keep me occupied.

5.  I talk about how I feel. Having an undiagnosed condition can be emotionally overwhelming, so to deal with those emotions when they come up, I make sure I talk to someone in my support system to help me deal with them.

These things help me to cope and to stay as strong as I can during this process of hopefully getting a diagnosis. 

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When Chronic Illness Makes My Future Almost Impossible to Address

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I was diagnosed with my chronic illness at age 14, and my life has been changed forever.

By far the largest impact it had on my life is on my future. I’m not sure anymore if I’ll be able to finish my schooling and lead a normal life. The thing about my chronic illness is that it steals my life. While this seems horrible, I can accept the present as it rolls by with some adjustments, but the future comes with uncertainty.

As a chronic pain patient, it becomes almost impossible to talk about my future because I can’t accept that uncertainty. In a matter of months or years, I may require brain surgery or end up in a wheelchair, but I won’t know until it happens.

There is always a level of uncertainty in people’s life, but this uncertainty can be foreseen. You can’t predict a car accident, but with a chronic illness you run through all possible scenarios in your head on repeat. I’m guilty of often running these through my head.

Unfortunately, so many of us can also be brushed of when we attempt to speak out about our illnesses. We’re told we’re faking it or that we talk about it too much, so these thoughts are bottled up. It becomes a vicious cycle as our worries are brushed off, making them even harder to talk about.  

While society preaches not to say anything at all if you don’t have anything good to say, sometimes the bad does need to be addressed. I personally put on a mask every day. I wake up and apply layers of makeup and a smile. But when I get home, I crash on the couch covered in braces and ice. That side I cover up is the real me, though, and I should be allowed to talk about my illness and my future no matter what uncertainty it holds.

I have learned to live in the present recently due to my unclear future, but one thing has become clear to me: Those of us with chronic illnesses need to address our concerns over our futures before they eat us alive.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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mother with baby

6 Things Moms With Chronic Pain Should Know

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I’d already lived with chronic migraine, occipital neuralgia and thoracic outlet syndrome for seven years. When I learned I was pregnant, I knew my pain would affect my parenting, but I didn’t realize just how significantly.

I remember one night in particular so vividly when my son was just a couple months old. It was around 3 a.m., and I couldn’t lie down. I couldn’t move around. I couldn’t watch television. I couldn’t read. I just was.

I knew my baby would soon wake and need me, but the problem was I didn’t know how I would even physically manage to hold him. 

It was the most intense migraine of my life. The pain was so bad I was shaking. My vision was blurry, and I could only manage silent tears because any movement or sound I made exacerbated my agony. I longed for dawn to end that dark night, certain that morning would never arrive. But both literally and figuratively, it did.

Since that night, I’ve understood the significant burden that parenting with chronic pain can entail. Here are a few things I’d like other mothers with chronic pain to know:

1. You aren’t alone.

Pain is a subjective experience, unique to each individual who suffers through it. Since pain is so uniquely personal, living with a chronic condition can be isolating. Unfortunately, the odd sleep schedules and physical demands of parenting can lead to even more loneliness.

When you’re both a new mom and a mom in pain, you can sometimes feel utterly, hopelessly, inconceivably alone — even when you’re lucky enough to have a strong support system. 

The good news is you’re not alone — even if it feels that way. In fact, in the United States, 45 percent of the population has at least one chronic illness, according to the Partnership to Fight Chronic Disease. In the U.K., chronic pain affects nearly half of Britons, according to a study by Imperial College.

2. You don’t have to parent the way other parents do.

The internet’s endless wealth of information is an empowering research tool, but all that information can also be overwhelming when you’re a new parent trying to sort through so many competing voices telling you what’s best for your child.

The internet is also a sounding board for some of the most confident and cruel know-it-alls who will convince you, at your most vulnerable times, that you are the world’s worst mom if you don’t prescribe to x, y or z style of parenting.

Few parenting topics are shrouded in as much debate and controversy as how we feed our babies. Some moms find breastfeeding easier because they can sit and rest while the baby feeds. However, others have conditions — like mine — that can make holding the baby for so long difficult, even when in a laidback position. Choose what works best for you and your child.

Parenting critics aren’t living through your pain and suffering. Only you can know what’s best for your individual situation, your health condition and your unique baby. 

3. You don’t have to parent the way you would if you weren’t in pain.

Before I had my son, I read so much about the benefits of babywearing. I’d internalized the voices of online babywearing advocates who convinced me the practice was essential to good parenting.

Then one day I took my son to the grocery store, and I wore him in a baby carrier for the entire trip. It was a beautiful day, he slept peacefully against me and I was able to get all the shopping done while keeping him close.

Unfortunately, the day did not end so beautifully. I spent that night experiencing one of the worst pain flare-ups of my life with lightning-like pain stabbing and shooting into my face until I was incapacitated with pain. I knew I shouldn’t use the carrier again, so from then on, I kept my son close to me in a stroller where I could smile at him, talk to him and watch his facial expressions as he discovered the world around him. The stroller allowed me to keep my son close — and protected me from future pain, too.

We all have things we wish we’d done differently. We can’t always change our circumstances, but we can adapt our parenting to best fit our challenges.

4. Let go of the guilt. 

If there’s one word we hear repeated again and again in the parenting with chronic pain community, it’s guilt. After I had to stop babywearing, I felt so much regret I couldn’t parent exactly the way I’d planned.

I wish I’d been more flexible in understanding that my preconceived ideas of what good mothering looked like had to shift to accommodate my health. If I’d adapted my mindset sooner, I would have suffered through a lot less guilt.

5. Accept help whenever you can.

Unfortunately, some mothers don’t have a spouse or other loved ones to help them parent. But even the mothers who do have a support system can feel an undue sense of responsibility to be the sole care provider for their child.

But it’s OK for someone else to help with infant feeding while you rest. It’s OK for a trusted loved one to get up with your child in the night. It’s OK for your family member to assist with housework.

Let yourself rest whenever possible. 

6. There are resources that can help.

For many parenting with illness challenges, there are great resources, but unfortunately, they can be hard to find. Infant feeding was one hurdle I had to overcome when my son was a newborn, and I was coping with chronic pain.

I didn’t fully understand which medications I could take while breastfeeding. Since he was so dependent on nursing for comfort, I tried to manage my pain without any meds, which caused a lot of unnecessary suffering on my part. Once I met with my hospital’s lactation consultant, we were able to figure out a more viable plan that allowed me to start on safe medications without forcibly weaning him.

If you’re also trying to balance breastfeeding and managing chronic illness, there’s also the Infant Risk Center at Texas Tech University Health Sciences Center, which provides some of the best guidance and most up-to-date research on medications and nursing for no cost. For moms who opt to formula feed, Suzanne Barston’s Fearless Formula Feeder site offers a wealth of support.

If you need additional help managing a chronic illness and parenting, some psychologists specialize in helping people with chronic pain. Many doctors can recommend therapists with whom they know their patients have had good experiences. The Psychology Today website provides a searchable directory, too.

Although much of what I’ve mentioned here relates to parenting an infant, many of these principles — letting go of guilt, allowing yourself to rest, understanding how your parenting might be different as a result of your condition — applies universally to all moms.

A version of this post originally appeared on the blog Mothering With Chronic Pain. Follow Mothering With Chronic Pain on Twitter

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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My Life With Chronic Illness is Like a Balloon Floating in the Sky

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Imagine a balloon full of air, floating in the sky. Now imagine a bird hits that balloon, causing it to deflate a little. It drops further down, where it hits a tree and deflates some more.

I am that balloon, and the obstacles hitting it are my illnesses.

I used to be full of air, gliding happily through life. Then suddenly an illness hit me, and I lost the use of my legs. I started to deflate. Before I knew it I had several illnesses attacking my balloon left, right and center. I was deflating more quickly.

Some days when the pain is bad, I struggle to keep afloat at all. It’s a constant effort to not hit the ground. Sickness and headaches can cause me to float sideways, neither inflating or deflating.

Some days I may wake up and I don’t quite feel so dizzy. I may have slightly less pain, and so I inflate a little. I fly upwards slightly, and start to feel happy because I’m not so close to the ground. “I’m going to be OK,” I think to myself.

Bang. I’m hit by a wave of pain, exhaustion, memory loss and dizziness. In a flash I hit the ground. I lose hope again, and cry, feeling like I can’t get back up.

Slowly but surely those I love start to gather around me. They give me the hope I can’t give myself at that moment, and help me rise up and float again.

My illnesses may cause my journey not to be smooth. My balloon of life will rise and fall, but I’ll hold on for the ride. I will carry on the fight, and ask for support when I need it.

We all need help to inflate our balloons sometimes.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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