On the Nights 'Painsomnia' Steals My Sleep

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This morning I sat at the kitchen table and cried.

Alone, while my dogs were napping after their breakfasts and my husband was in the shower getting ready for his day.

Those quiet, yet powerful sobs I’d mastered as a child growing up in a household where any show of emotion would be turned and twisted against me.

About a month ago, I wrote about how sleep was my only escape from the relentless pain. I’ve lost that, too. It’s been a couple weeks since the medicine I used to take to help me sleep through each pain-filled night stopped working. Now, no matter what I do, I wake up multiple times a night, in terrible pain, praying to fall asleep again. I usually do after an hour or two, but it never lasts until I’m again ripped awake.

Being in pain all the time was bad enough. Being sleep deprived and exhausted —which, lucky me, also only makes pain worse.

So sometimes I sit and cry, in pain, exhausted, and wishing for a few uninterrupted hours of sleep.

I can’t even nap anymore. I try. I end up lying there, awake, in pain, and frustrated.

I never had trouble sleeping before in my life.

And when I do sleep, I dream about my pain or things tangentially related to it: going to one doctor or another and getting bad news.

My edges are so frayed from pain and exhaustion, the little functioning I could manage before is all but stolen from me. Even making a telephone call seems like a monumental task. Writing can be impossible because my brain can’t seem to figure out what a word is more than a gesture and “thing,” let alone how to spell it. Yesterday I was trying to text a friend and I nearly gave up because the word “adjective” suddenly seemed like it was written in a foreign script as I could not figure out how to spell it even remotely close enough for the autocorrect to help.

And that makes me cry, too.

I’m known for being an extremely patient, understanding and nice person. But pain and lack of sleep has changed me. Even my mother remarked about how I’ve changed. I yell and snap at people and even my dogs with almost no prompting. I dropped the remote this weekend and lost it — I threw it into the couch and started yelling — all because I thought I’d finally broken it for good. And then, even after my husband determined it was not broken after all, I cried for a good 10 minutes, unable to stop.

I hate that this is what my life has become.

The one thing that helps carry me through even the worst days — besides my amazing and supportive husband — are the people I’ve met through social media who also suffer from chronic illness and pain. I text regularly with one friend in particular, one of the few people who truly “gets” what I’m going through. Even if we can’t do more than chat with each other and swap doctor horror stories, it’s still nice to have someone to “dump on” where I don’t need to explain myself, and she doesn’t need to explain herself to me, either.

We’re both waging the same war.

I know it’s a cliche, but when I say you’re not alone fighting your own invisible chronic illness, battling daily pain that has changed your life, you’re not.

It may feel that way too often, since chronic pain can be isolating. But we’re there. Quietly pinning away on Pinterest in the dead of night, logging hundreds of hours on Netflix, and blogging about our experiences when we can.

Every day I remind myself: It’s OK to cry. Just try not to give up.

Follow this journey on Chie Aleman.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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What Feeling ‘Better’ Looks Like When You Have a Chronic Illness

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Something peculiar can happen when one is chronically unwell; the measure of comparison against normalcy just vanishes and is replaced by stages of unwellness and disease.

In practical terms that means some chronically ill folks like myself may have forgotten what being “well” feels like. How much does a person who is well feel on any given day? What’s the threshold for fatigue between well and unwell people? And at what point is pain pathological as opposed to the aches and pains everyone simply gets sometimes? When you add the fact that people sometimes adapt to the realities of life without even realizing this process is happening, we get a problematic scenario.

A few months ago, my doctor told me my health had deteriorated further. I couldn’t understand this at all. Sure I was exhausted, slept a lot and was in a lot of pain. But you see, my point of reference for the past 10 years has been exhaustion, pain and one health issue after another. Normalcy is no more. And when that happens, even deterioration is hard to detect for the person experiencing it.

So I went back to the basics. I talked to a friend of mine about activities healthy people can do on any given day. It turns out healthy folks are able to take a shower once a day if they so choose, can do more than one activity a day without collapsing, can function on seven to eight hours of sleep a day and generally don’t experience pain requiring more than a couple of over-the-counter pain relief pills to tackle.

I knew my daily life wasn’t the daily life of a healthy person, but what had eluded me was how far removed it had gotten away from “normal.” So I got a pen and paper and wrote down all the things I usually did in a normal day.

I sleep for 12-14 hours and still wake up feeling exhausted. I require high doses of medications to control pain, so I can put one foot in front of the other and get out of bed. I avoid supermarkets, shopping centers, drinks with friends, restaurants, coffee shops, parks and playgrounds because they involve walking, exhaustion and worsening symptoms. I have to dress like the weather is always tropical — even when it’s snowing — to control the swelling, redness, heat and pain of my limbs whose nerves are malfunctioning.

If that is the everyday reality of my health, then how do I even begin to gauge improvement or deterioration within it? This may sound ridiculous, but my personal measure is showers.

At my best, I have a shower in the morning and a bath before bed every single day. When I feel mildly unwell, that gets cut down to a quick shower every morning. Moderately unwell means a shower every two to three days. The stage of “I should be in hospital attached to drips” means a shower every seven to 10 days. If I allow myself to cross the 10-day mark without a shower, we’re at ICU level of disease activity. This gauge of disease mayhem against ordinary day to day activities is, of course, different for each of us and depends on the things we most enjoy doing on a good day.

So you see, my “better” may never be what the general population may think of as better. My experiences of life and normalcy will always be different. And that’s OK. “Better” may never mean cured or stabilized, but if it means getting to do a few more of the simple things one enjoys doing a bit more frequently, then that’s something we could all aim for and celebrate perhaps.

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.

Lead photo source: Thinkstock Images

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Why I Say 'I’m OK' Despite My Chronic Pain

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We’ve all heard it before, especially as people with chronic pain. Your aunt or grandma comes over and says, “Oh honey, and how are we feeling?” You may sort of stare and think of what you’re going to say. Me? I just use my go-to phrase, “I’m OK.” Many people seem to think if you look OK and act OK, you must be fine. That’s the thing with those who are chronically ill and have chronic pain — we become experts in hiding our pain from other people. Each person has a different reason for doing this. Mainly, I do it for my own emotional protection because I don’t want to be asked the typical 20 questions about it for one simple reason: it’s never going to change. It gets worse at some points, better at others, but that’s rare. It’s never going to go away.

Many people say it just to be nice because they feel uncomfortable around others. And do I want to make them feel more uncomfortable by responding, “No, my skull feels like it’s constantly being sawed into and whenever I touch my scalp it feels like it’s on fire. Whenever I sit a certain way, my tubing moves onto a nerve and it feels like you just stabbed me with a big wooden stick all over?” Of course not because that just makes it more awkward. I sure don’t know what I would say if someone just threw that out there when I was standing next to them.

The truth: I’m in terrible pain all the time, but I don’t want you to feel awkward, especially if I’m out having fun. Just keep it in mind that I am in pain 24/7.

I’m afraid of the future. I’ve been told I’m only going to get worse as time goes on and have more and more surgeries. Yes, there are those rare cases where you don’t need surgery for 20 years or so, but in my case the chances of that happening are slim to none. I know none of this is my fault. I know my illness is just completely unpredictable and that’s the reason I have chronic pain. Some days I feel better than others, but some days I really do not. I know there’s nothing I can do about it. I just have to accept it and move on.

Yes, right now, I am doing better than I have in a long time, but that doesn’t change the fact that I’m constantly in pain. And yes, I smile through chronic pain. Yes, I laugh through chronic pain. It’s the same way a mother who’s just given birth and in immense pain, can be so happy and in awe as she looks down at this baby she just helped create.

So yes, ask me how I’m doing. I don’t want you to be afraid of asking me. Just don’t be surprised if you get the same answer all the time.

Follow this journey on Blessings in Hydro.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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6 Challenges Healthy People May Not Realize Are Caused by Chronic Pain

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Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle. The truth is that chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people. Remembering that like all bullies, chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

When you are in pain it can be very hard to think beyond the pain and see the big picture. So in many cases, even those in chronic pain may not realize that’s what’s making them tired, sleepless, cranky, ruining their concentration, their self-esteem, and causing them to isolate themselves. So if you love someone who is suffering from chronic pain and notice some or all of these other symptoms, show a little extra compassion as you now know why they are feeling that way. Maybe even offer some insight if they aren’t aware, but be kind about it. We need kind words and gentle hugs more than anything else in the world.

1. Pain is exhausting. We have all had a bad headache, a twisted knee or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail. You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day can drain you as bad as any flu. Even when you try to ignore pain, it will stay in the back of your mind, screaming for attention, draining away all your energy. With chronic pain this is amplified because it isn’t just one day; it is months or even years of struggling to live with this very demanding monkey on your back. I’m tired just thinking about it.

2. Pain can cause poor sleep. You would think that after a long day of fighting with constant pain, sleep would be a great reprieve. Unfortunately, this can be just a dream (pun intended). First, chronic pain can make it hard to get to sleep and stay asleep. The pain will pull me right out of deep sleep. But even when you do sleep, the pain signals continue going to your brain and can cause sleep to be broken, restless and oddly enough, exhausting.

3. Pain can make you cranky. Chronic pain sufferers aren’t (all) just cranky buggers by nature. Pain drains me physically and mentally. When I am in pain, even the simplest things feel overwhelming and people tend to react accordingly. You may have only asked your spouse with chronic pain if they would like to go to a movie, but in their head they have considered if they can sit still that long, how much medication it would require, if they have the energy, if they will stay awake through the movie, how high their pain is now and how it might increase, if they go will it make getting through tomorrow harder, and most importantly, given all this, will it be any fun. They didn’t grouch at you for the fun of it, pain just makes it very hard to remember that everyone else is coming from a totally different perspective, where a movie is just, well, a movie.

4. Pain can kill your concentration. Most chronic pain patients fight like crazy to live a normal life.  They try to ignore the pain and go about their days, but it’s just not that easy. Even when you ignore pain, push it to the back of your brain and focus on, say, work, pain doesn’t give up. You can sit at your desk, working on your computer, trying to concentrate, while your pain plays the part of a toddler desperate for your attention. Pain will poke you, tug at your clothes, spill juice on your keyboard, scream your name and try to use your arm and leg as practice for the uneven bars. No matter how hard I try to tune it out, part of my brain is always processing the pain and it often pulls my concentration to terrifyingly low levels.

5. Pain can damage your self-esteem. Say the pain has made you tired, cranky and killed your concentration. Being exhausted all the time makes everything more of a challenge than it should be, your quick temper may have strained or destroyed once-strong interpersonal relationships, and your inability to concentrate might have hurt your job performance. You can’t do what you want to do with your time even when you try, and it seems like everyone is mad or unhappy with you no matter your efforts. Life as you know it is crumbling and all because of… you? Many pain sufferers blame themselves for these failings, remembering that they used to be able to do everything. They may see chronic pain as a sign of weakness or a personal defect they should be able to overcome. The end result is that on top of everything else chronic pain damages your self-esteem.

6. Pain can cause isolation. When you’re in constant pain, probably the last thing you want to do is attend the company party, the neighbor’s backyard barbecue, or even small gatherings with your closest friends and family. Your friends and family are still the light of your life, but the physical and mental energy it requires to go out and be social can be just too much to handle. You start to bow out of parties and cancel plans, not because you don’t want to go, but because you just can’t. Eventually people may stop inviting you, calls to make plans decline, and the scary thing is, you might not mind. The pain has slowly but surely isolated you.

What about you? What are some effects of pain that seem obvious, but aren’t?

Follow this journey on Then Everything Changed.

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.

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What Anderson Cooper's Show About Prescription Addiction Got Wrong About Chronic Pain

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Paul Gileno is the founder and president of the U.S. Pain Foundation.

The “Anderson Cooper 360” town hall “Prescription Addiction: Made in America,” which aired May 11 on CNN, further stigmatized people with pain. I am deeply troubled and disappointed by the one-sided, biased discussion surrounding pain medication that completely disregarded the voices of people living with debilitating pain.

U.S. Pain Foundation was asked to participate. As an organization, we were hopeful this would be the start of a positive, constructive conversation bringing better resources, understanding and help to those dealing with addiction and those courageous individuals battling unrelenting chronic pain. Sadly, the outcome was not what we had hoped. Instead, the show was another slight to the pain community. It now seems U.S. Pain was invited not because they valued our opinion and wanted to bring the true story to the forefront, but rather because they wanted to show that all sides of problem were included in the “discussion.”

The apparent goal of the program was to further stigmatize people with pain by pushing an agenda — an agenda that harms those suffering with pain. The town hall meeting showed that CNN and Anderson Cooper do not think people with pain matter. The hour-long “conversation” appeared to be scripted, was extremely discriminant to the pain population and was potentially hazardous. It is a travesty that millions of Americans are treated as second-hand citizens in the opinions and views of mainstream media, government officials and society.

Mr. Cooper, a true journalist attempts to give the full picture and tries to show the whole story. They do not push an agenda or ignore an entire population of people suffering from pain. Sadly, Kay Sanford was the only person with pain given the opportunity to speak. Appallingly, both Anderson Cooper and Dr. Drew Pinsky interrupted her as she shared her experiences and tried to ask a question. They were dismissive of her pain journey. In a mind-blowing moment, those on the panel even had the audacity to say her story was the minority. This shows me CNN had an agenda, which did not include highlighting the courage or struggles of people with pain.

U.S. Pain maintains that addiction is a serious epidemic in America that also faces societal stigmatization. However, the foundation believes the pandemic of pain in America is just as important. Those with pain have to prove their pain daily, and mainstream news outlets that preach a “balanced approach to reporting” are in fact making the situation more difficult for us to have voice and stake in the solution. They are impeding our ability to have access to the pain care we need and deserve. When will people with pain matter enough? What must happen for our voices to be heard?

As founder of U.S. Pain Foundation, I am asking for your help today — right now, in this moment. I encourage all of you to contact those CNN producers who led us to believe we would have a voice at the table. Together, let’s encourage them to do a show on pain and the realities of pain. I encourage you to speak out against these so-called journalists and reputable leaders in the field of medicine (such as Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew Pinsky) who are harming people with pain by not sharing the whole story. Speak your mind and share your feelings on social media.

There is strength in numbers. Let’s start a public outcry for a new show about the plight of people with pain. Talk about the challenges you face accessing adequate pain care, and the difficulties you have overcome to find a new normal. This isn’t only about pain medication; this is about making sure millions of Americans are not further degraded or discredited. It is about advocating for better solutions that are covered by our health care and accessible to all.

Take this opportunity to empower and educate those who should have done better research. Let them know this type of program causes more scrutiny as well as heartache and pain for people who are already judged, marginalized and stigmatized. I am asking everyone to speak loud and speak often. People with pain matter. I repeat: People with pain matter.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I Don't Talk About My Chronic Pain, but That Doesn't Mean It's Gone

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The Mighty recently asked people to write about a part of invisible illness no one else is aware of and why it is time to start talking about it. When you see the two Jessicas below, you see just how far I have come in my management of chronic pain. The picture on the left was taken right before I entered the Mayo Clinic in Minnesota and learned how to accept and manage pain naturally. This picture was taken about 13 years ago and is when I was at my worst. I had spent 10 years searching for a cure, trying every medication, seeing every doctor I could find, having surgeries, and finally self medicating by drinking copious amounts of alcohol in Boulder, Colorado. I no longer wanted to live and I had given up. The smile on that face is not real. I was in the worst physical and emotional pain of my life and had truly given up on myself, my dreams and my life.

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Fast forward to the picture on the right to the Jessica of now.  This picture was taken since my daughter was born and the smile on my face is real. I am not just surviving in this picture, I am alive. I have been practicing managing pain naturally for about thirteen years and if a picture can say a thousand words, I believe the above two images show a million words. While I was in the Pain Rehabilitation Center at the Mayo Clinic I learned many tools to manage pain naturally. I was in the program for about a month and although I was reluctant to accept chronic pain in the beginning of the program, the work and dedication I put into managing pain naturally saved my life, literally.

The hardest thing I had to come to terms with was their lesson to not talk about pain to our loved ones. The concept behind this is that the more we talk about pain, the more we think and dwell upon pain. It takes tremendous work to bring your attention and mind away from your pain and onto something else. Talking about pain is what is called a pain behavior: a pain behavior is anything that draws attention to our pain. I still struggle with two pain behaviors: over-doing it in a way to not think about pain, and rubbing my face, head or back when I start thinking about the pain. I could not imagine not being able to talk to my dad or my loved ones about the pain I was in.

The program was only a month and yes, I came out looking like a different person with a very different mindset than I had when I first entered the program. I stopped looking for a cure, I stopped taking medications, I stopped drinking, I exercised, meditated, and truly was a completely different person than the person my loved ones knew before I went to the Mayo Clinic.

However, I still had/have chronic pain. I was working on not talking about pain which was very difficult. The program taught us to tell our loved ones that we were having a “difficult day” when the pain was excruciating but not to use the word pain. I agree with this concept and I can honestly say it works for me because at the age of 34 I am continuing my success in my management of chronic pain despite never finding a cure. People have forgotten I have chronic pain and that is what I want people to remember.

The title of my website is No One Gets Flowers For Chronic Pain which of course is a metaphor. People who are as fortunate as myself to be able to accept pain and live the life they desire still want support and encouragement. Many of my readers email me and ask the same question: “How are you able to work when you have chronic pain? I could never hold down a job with this severe pain.” I want to be clear. In my first job as a social worker I worked 32 hours a week, not the average 40 most of our society works. I did not make a lot of money but I enjoyed what I did, I was able to take breaks to practice meditation/mindfulness, and I worked enough hours to receive benefits. Because of time management and being able to incorporate my tools in managing chronic pain naturally, I was able to be a great social worker.

Years later my daughter was born, and my dream of becoming a stay-at-home mom came true. For those of you who are not stay-at-home moms, let me be the one to tell you that being a stay at home mom is work. I think it is very important that our society and those of us who have chronic pain remember that no woman is ever “just a stay-at-home mom.” For those with an invisible illness such as chronic pain, the job of being a stay-at-home mother becomes that much more difficult despite its joyfulness.

Yes, now I am a stay-at-home mom and writer, but I still have chronic pain. Some days are really hard. Some days I want to tell the people I care about: “I am in so much pain. I know I have come a long way but I still cannot do everything you would like me to do because I have to practice moderation and listen to my body if I am going to continue to live in a healthy way despite pain.” I still get anxious and at times depressed because of pain. No, I do not talk about it and it happens so infrequently that I do not feel the need to.

However, I want/need people to understand that just because I look so much better on the outside and I am healthy, I still need support and understanding. There are reasons I say no to doing certain things and most of the time it is because of my invisible illness.  There are days I am not the energetic, happy, laughing Jessica because I am having a “difficult day.” Yes, it has been years upon years that I left the Mayo Clinic and have been managing pain naturally and no longer allow pain to interfere with my joy, but the pain is still there.

Sometimes when one stops talking about something, they feel forgotten. There is a reason chronic pain is called chronic: It never goes away. When someone loses a loved one they are given flowers, cards, food, and everyone is busy planning a ceremony and for days people comfort the person who has faced a loss. However, following the funeral and a couple weeks of mourning, for many it is as if the death never occurred. There are no more flowers, cards or dinners being made. However, the feelings of loss the person feels are still there and probably worse than they were when he or she lost their loved one. Now this person has not only lost someone they love whom they will never see again (so some believe) but have also lost the support and love that was given to them for the weeks following their loved one’s death. I think the correlation to this and to chronic pain are extremely similar.

want and I know those of you who rarely talk about pain and are managing it well want to be remembered and supported. We still have chronic pain, whether or not we talk about it. We need love, support and encouragement from those we love. Most of all, we want to be remembered.

Follow this journey on No One Gets Flowers for Chronic Pain.

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 send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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