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How to Hold Onto Hope When You Have Chronic Pain

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I know the feeling – pain is so pervasive you can’t imagine life without it any more. I’ve lived with debilitating nerve pain from thoracic outlet syndrome since the fall of 2007.

It’s part of what has made living with pain so incredibly challenging. It’s such an immediate, and invasive experience that there isn’t room for anything else. It demands our full attention, and it takes most of our energy – not just the healing process, but being in pain.

Life without pain seemed to recede irretrievably into the distant past. I almost couldn’t remember what it felt like to move freely, to not be in pain.

That’s one of the things that made me feel like giving up. Life without pain lived in some remote, untouchable place in the distant past. It seemed inaccessible, something long ago and far away. And because I couldn’t access that, couldn’t even imagine life without pain any more, the pain felt permanent.

These feelings of “I’ll never be out of this,” “there’s no end to pain,” “this will never stop” took me to hopelessness and depression. It’s really hard to come back from that if there isn’t a lot in your daily life to lift you back out.

You might say to me, “You don’t know how hard it is for me.” And you’re right. I don’t know your pain. No one does except you. But I can tell you that I know about being in relentless debilitating pain every hour of every day for most of the past 10 years. I know about waking up in the morning and having to pull on all my inner strength and resources just to get through another day.

I know about wanting to give up.

I might have, but I had someone who needed me to be there.

I think that’s one of the secrets of carrying on. Finding someone or something that calls you back into life – that you can use to call yourself back into life. Something or someone you care about being here for.

It might be a child. It might be a spouse. It might be a friend, or it might be a cause. Maybe you have something the world needs to hear because of your time in pain. Maybe you want to advocate for people with chronic pain. Maybe the pain has taught you something that you can put into writing or art or poetry or song. Something.

You may have to work at it, and you may have to search to find something to care about – but find a line to throw back out into life, to hook into something that’s important to you, and pull on it.

Pull on it like your life depends on it.

Am I going to tell you that if you do this, you’ll find your way to the other side of pain? No. I can’t promise that. But I also can’t say it won’t happen either. And neither can anyone else.

It’s difficult to find a way to believe in life after pain if your doctor tells you there is little hope for it. It’s hard to keep going when there seems to be no medical reason to expect something better.

I know. I was given a life sentence too.

But I have moved into a much better place since then. I had to learn to stop letting my current situation completely determine my future. I had to stop looking only into the past to find any evidence of being pain-free because that was reiterating the message that that part of my life, the pain-free part, was over. That it would never come again.

Yes, that part of life is past. But the future is not yet created. The future is wide open. It’s possible that things could get worse, but there’s also the possibility that things can get better. The place of no pain is hard to imagine when we’re in pain, captive to it, but that does not mean that the place of less pain or less pain can’t ever exist.

I am living proof.

Did I go from barely being able to walk down the street to competing in cross country ski races? No. But I have gone from barely being able to walk down the street to regular painful walks to regular more enjoyable and less painful walks to a couple of movements of Tai Chi to doing Tai Chi daily. For me, that’s miraculous.

But I couldn’t have gotten there if I’d let my then-present experience with pain convince me that it would always be that way. I had to use tenacity, fortitude, and courage to keep going when it didn’t seem to be getting any better. I had to tell myself that I didn’t know the future, and neither did my doctors.

Nothing, nothing, nothing in our current experience proves that the future does not hold a life with less pain or no pain. Nothing. No one can tell you that, or take that hope away.

My future is between me and my Creator, and no one else.

And so is yours, my friend.

Be as angry as you need to be about what you’re living through, but don’t give up.

Don’t give up.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on The Pain Companion.

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When I Find Myself Trying to Be the 'Positive Person With Chronic Pain’

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I’m well-known as a person who never stops moving. I’m a full-time student, I work multiple jobs, I have active hobbies including rock climbing and dancing. To everyone who knows me through my actions, I’m a person who enjoys constantly doing something.

My social media profiles reflect this. I show myself being an active person, I share my accomplishments. I very rarely bring up the not-so-glamorous parts of my life. I try hard to present myself as a person who has everything together. After going through half of my life with people worrying about me and my mental health, I don’t want anyone to even vaguely perceive me as struggling.

However, the truth of the matter is, any chance I have, I’m on my heating pad in my bed with my TENS unit hooked up to my back and Icy Hot on each one of my limbs.

 

While most of my friends are aware that I live with chronic pain conditions, very few are aware as to the extent these conditions affect my life. I’m afraid if I share those effects with the people close to me, they won’t want to be around me anymore.

Shame is the driving force in my fear. I have worked through the shame I feel talking about my eating disorder and addiction, and I’m logically able to understand there’s nothing to be ashamed of regarding my pain as well. Logical and emotional thinking are different, though. I emotionally feel as though there should be some way I can force myself to “push through” and deal with the constant pain to be the person my friends think I am.

The author lying in bed next to author's dog

The reality of the situation is that I still find myself trying to be the “positive person with chronic pain,” and that’s not an authentic version of myself. There are days when I can’t get out of bed because getting down the stairs is too much for my body. There are days when all of my energy goes towards taking care of my body in the best ways I know how, and I don’t have the energy to be with my friends or be an active person.

Fighting shame feels the same as fighting stigma in that I have to own it. I need to recognize my limits and tell them to others so they can understand what I’m trying to cope with on a daily basis.

There’s not a single person on this planet who constantly has good days. My not-so-good days just happen to look a little different, because I’m listening to what my body is telling me. Even my good days look a little different because I’m still trying to listen to my body and give it what it needs to feel OK enough to be active.

There’s nothing shameful about learning how to take care of yourself and listening to the cues telling you what you need. I can’t perfectly curate my life because that isn’t how life works. I accept myself for who I am, chronic pain conditions and all. It’s time for me to let others understand who I am in an authentic manner, and that starts with breaking down shame and allowing myself to be vulnerable, even if that isn’t always picture-perfect.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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When Life Gave Me Chronic Pain as a Dance Partner

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OK, I think I’ve figured out a way to explain chronic pain and it’s bearing on my daily life. Be patient, this is only the third time I’ve explained in these terms.

You, relatively healthy, wake up at a one. You’re alive, maybe something’s achy or not right, but overall, you’re good. Maybe aging issues, tummy troubles, psychological or emotional pains, some joint being out of whack kick you up to a two or three. Still, overall, good. Doesn’t impact your day, and if it does, it’s over in a week, or a month. Then back to a one or two. Standard.

Now, you leave the house. Traffic sucks, your car dies, get to work late, the boss is pissy. You’re having an overall rough and tumble day. Now you’re at a five or six.

Everything is still manageable. So let’s throw in some real life shit. Dad’s not well. The cat died. Car broke and there’s no spare money to fix it. A family member or friend is sick. Root canals. Bad doctor’s appointment. Moving. Divorcing. Financial instability. Relationship issues. Now we’re up to a 10. You’re visibly stressed, not sleeping well, worried, planning, making lists, eating poorly, lining things up, strategizing, gaining or losing weight, pacing, seeking outside help. Maybe you’re pissy, frustrated, overwhelmed, isolating.

Life, with it’s slings and arrows, shows up to the knife fight with a gun. Shit. But you’re still used to functioning at a two, so you can roll with this for awhile.

Now. Imagine you wake up everyday at a five or six. For over 10 years – and that’s not including the surgical recoveries or concussion. Seriously, consider it. Every day, a five or six.

Energy stores are already depleted, just by being alive. Pain is always there. It is a perpetual energy sucker. Add to that the relentlessness of physical therapy, physical care, caution with movement and activities, planning said activities around pain. (Is it worth it? Is dancing worth a week of waking up at a six or seven?) Now add the emotional thoughts:

“Why don’t people ask me to hang?”

“Can I support myself if this gets worse?”

“Oh God, it’s been a bad two weeks, am I fucked?”

“I wish I could do ___ still!”

“If I clean the house, I’ll have to take it easy tomorrow.”

“Sorry I can’t go do that with you like I used to.”

“God do I hate ‘comfortable’ shoes!”

“I should workout more, but it always causes more pain. How do I deal with the two to three months of acclimating to exercise if I can barely tolerate my current level of pain?”

Now add just enough life to kick it up to an seven or eight. Just a common rough and tumble day kicks it up to an seven or eight. So life, with its insistence on things always happening (impermanence), often kicks it up to a 10 or 15.

Dad isn’t well. A beloved has been fighting cancer for two years. Dear friends are walking hard roads. I had a root canal and a CAT scan this month. I helped a friend move (managed, no lifting).

“Do I try stopping this med or that one? Will it help?”

No, that didn’t help. Back on that one, let’s try dropping this one. Ongoing.

Overdid it hiking, OK that’s it for a few days.

Without space to breathe, to come back to, without community support, and loving friends and family… I don’t know where I’d be today.

It’s a little dance I engage in daily. It doesn’t go away. The pain is constant. I can side step it with meditation, hiking, and good, connected, loving fun sex, but it’s waiting for me when I get back. This isn’t pessimism, this is how it is right now. (Don’t get me started on the insidious positivity cult this country has going.)

So. What that means is that I don’t roll with the punches as well as I did before pain. A small thing to you might be the last straw for me. A bad day is a bad day, but when all days have an underlying suck, a bad day is horrible news. I fight to stay centered. I consciously work to recognize small things as small things, and some days, I don’t succeed. My frustration may hit a bit sooner than yours. My stress is already high. But I’m always, almost always, mostly, trying to be a kind and compassionate human being on a planet full of people that are also struggling. I’m trying.

Does that help?

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23 'Habits' of People With Chronic Pain

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After living with pain for a period of time, you may start to notice you’ve developed some new “habits” — things you do, sometimes without even thinking about it, that help you get through the day. Perhaps you’ve developed certain ways to stand, walk or sit to minimize pain; or, maybe you have go-to responses you always give to people who ask how you’re doing. It could even be a coping technique, like watching your favorite show on Netflix every day.

We wanted to know what other habits people with chronic pain have developed, so we asked our Mighty community to share the little things they do because of their chronic pain. If you’ve noticed these habits yourself, you’re not alone. Let us know what habits you’d add to this list in the comments below.

Here’s what our community shared with us:

1. “I constantly pop my toes on my right foot. I mean constantly. While sitting, walking, bathing, trying to go to sleep, you name it. I have tried everything to end the habit. I’ll start because of pain or due to anxiety and keep going until it literally feels like my toes or ankle are going to break off. It hurts really badly in my shin when I pop for hours, so it’s really not a good thing to do! It’s just an outlet rather than screaming, I guess.”

2. “Playing video games helps distract me and calm me. I usually play Animal Crossing or Minecraft; they’re the easiest games I’ve ever played and don’t usually take much thought.”

3. “I always set my alarm 30 minutes early if I have a morning appointment. It usually takes that long to get the pain below an eight and to where I can move.”

4. “I take my phone everywhere, so that way I can call for help if I fall or something.”

5. “Anytime I plan something, whether it’s for fun or a doctor’s appointment, I first have to make sure I have at least the next day, or sometimes the next two, free to recuperate.”

6. “I’ve been collecting fuzzy socks for years now. They offer my feet an added layer of softness when I’m walking and have been very helpful since my newest symptom: extreme pain on the bottoms of both of my feet when I step.”

 

7. “I squeeze my nails into the palms of my hands to try and distract from the other pain and walk close to a wall in case I fall.”

8. “When someone comes to hug me I automatically put my forearms up and against my chest, in case they squeeze too tight. It used to insult my boyfriend a bit, but now he understands, and with him I only do it on bad days. He says it’s his bad-day detector now.”

9. “I can’t sit still in any one place for more than a few minutes. Nightmare if you’re out watching a film.”

10. “I sit in an odd slouched position and then remain completely still and calm. Otherwise my muscles around my kidneys spasm up and the kidneys hurt more. The more still I am, the more calm I look, the more pain I’m in. ”

11. “I stay decently ahead on my homework. If my fibromyalgia flares or if I end up in the ER for some random reason I know I won’t fall too far behind.”

12. “Near constant kicking of my feet when sitting or reclining. It keeps the nerve pain and itch down.”

13. “Tracking my symptoms/pain levels/routines daily. What types of action makes pain better/worse.”

14. “Bad habit is when I go days without bathing because it hurts too much to stand or let the water touch me. Good habit is finding ways to distract myself from the pain, whether with a book or movie that may require my full attention or a certain game.”

15. “I put my hair up in a bun or ponytail and often use dry shampoo as it’s exhausting just washing and drying it. I also have a habit of keeping a lot of things next to me in bed, like drinks, snacks, magazines and books because I wake up in the early hours.”

16. “Smiling and saying, ‘Yes I’m fine’ when really I want to scream and say, ‘Actually the pain never stops!'”

17. “I have a habit of saying no to events long before they come up because I already know that ‘at that time of day’ or ‘in that weather’ or ‘for that amount of time’ will be excruciating for me. It’s a negative habit for sure that I’m constantly trying to break.”

18. “I always write when I’m in pain. Whether it’s my own stories, or poems, or I’m just copying down quotes from other people that I’ve loved and saved, I always write. It’s a great distraction.”

19. “I lost so much control over my own life that now I’m much more annoyed when I can’t control things that are considered trivial, like someone using my hairbrush.”

20. “Clenching my teeth. I don’t mean to do it, but when I’m in a lot of pain, it just happens automatically. I’ll realize my jaw is hurting, and that’s when it’ll hit me how much I’ve been clenching my teeth.”

21. “I make a lot of self-deprecating jokes… which make people uncomfortable!”

22. “This isn’t because of my own pain but because of growing up with a mom with severe chronic pain. Because of always doing this for my mom, whenever anyone near me drops something, I zoom over to pick it up… sometimes when they are already half crouched down and sometimes before they are even aware they dropped it. And they look at me like, ‘Uh thanks but I could have gotten that.’ Even though it probably often causes more pain for me to pick it up than for them…”

23. “Volunteer when I’m healthy enough, because I know what it means to need help and want to give back.”


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25 Unexpected Coping Techniques That Help People Manage Painsomnia

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“Painsomnia” is a term often used within the chronic illness community to describe the frustrating but all-too-relatable experience of being unable to sleep due to pain. Even if you feel exhausted or fatigued, sometimes the pain is enough to keep you tossing and turning at all hours of the night.

To help those struggling to find relief, we asked our Mighty community to share some of the unexpected coping techniques that help them manage their painsomnia. Maybe some of the following suggestions can help you drift off to sleep a bit easier tonight.

 

Here’s what the community shared with us:

1. “I listen to guided meditations on YouTube! My favorites are the ones where they instruct you to breathe in a certain pattern and contract/relax certain muscles. I’m usually asleep within the hour.”

2. “Pressure blankets help me (not hot – still a lot of weight) and lots of pillows. I also do hot baths at random times of the night when my nerves go spastic because of pain and exhaustion.”

3. “I have a salt lamp I leave on at night rather than a ‘night light’ so that it’s a more soothing light.”

4. “Regular use of melatonin [and] never changing my sleep routine which includes my two warm cuddling purr babies. They make the biggest difference when you wake up in pain. One kitty has his bed beside my pillow and lays so at least one foot is touching my face/neck – and I get purrs right into my ear. The other kitty tends to either lie against my legs or if I’m restless or in pain he will lie against my body and I get the vibrations from the purrs. Works almost every time.”

5. “Laundry in the middle of the night. My mum has RA [rheumatoid arthritis], and always did laundry (to cope with her painsomnia) when we were sleeping. Now I do it too. Something about the dryer sound is soothing.”

6. “Watching or reading something new to distract myself from the pain as much as possible. It must be new, if I’ve seen or read it before my mind can continue to fully linger on my pain.”

7. “I will sleep with ice packs for any back, neck, shoulder and hip pain and then I drink a warm cup of fennel, peppermint, ginger, camomile tea for the bloated stomach pain and nausea.”

8. “Prayer is the first line of defense for me. I also have a few trusted friends I can talk/vent to and who will also pray with me. I have to get outside of myself or I will be more miserable.”

9. “I have hydrogen peroxide in a spray bottle and when I am in pain, I spray it into my hands and rub it onto where I hurt. (It’s usually my knees since that is where my RA affects me most.) I got this trick from my Grandpa who also suffered from arthritis.”

10. “I color in Jenny Lawson’s book ‘You Are Here.’ I also do guided meditation on the Stop, Breathe & Think app.”

11. “Lots and lots of ‘daydreaming.’ Making stories up in my head to distract [myself].”

12. “Blogging! Seriously, since starting my blog and now Facebook page, it’s a really good outlet when my painsomnia is bad. I’ve found that sometimes when I’m awake at 3 a.m., rather than getting upset, I start drafting a post on my phone. And sometimes I write for a few minutes, sometimes I write a whole post, but it helps, putting things into words just helps. It makes me feel like my pain isn’t for nothing.”

13. “Snuggling with my partner. There’s something so soothing about him absently rubbing my head in his sleep. It tends to calm me down and help me sleep more than I normally would.”

14. “I’ve started listening to audiobooks. I used to be an avid reader but holding books can dislocate my fingers now and strains my neck along with worsening my migraines. Usually after a few chapters of an audiobook I’m out like a light. The LibriVox app has been a lifesaver.”

15. “I take my meds, set myself as comfy as I can get in bed. Listen to Pandora, and play my puzzle games on my tablet. My tablet has been a lifesaver. I know lots of people say no electronics in bed. I swear it keeps my mind off the pain until I can get to sleep.”

16. “It sounds obvious, but deep breathing. I take several deep breaths, holding it in and pushing it out slowly while focusing only on the back of my eyelids. If my mind wanders I bring it back and start over. Pretty similar to (or it might actually be) meditation.”

17. “My dog is a reaaaally big help. It actually hurts too much to play with him at these moments, but his joy helps. Stuffed animals do the trick too.”

18. “Cannabis, lots of cannabis… I wish I could think of anything else but having been through the entire gamut of things they can prescribe, I stand by this 110 percent.”

19. “I put all of my favorite movies in my room. When it’s too much, I watch to try to take my mind off the pain.”

20. “Look, I’m just going to say it. Orgasms totally help. They kind of help recalibrate my brain or something and I’m able to get a handle on my pain when before my body and brain were both freaking out. It’s no cure but it helps a lot of the time.”

21. “I use my hot tub before bed so my muscles relax and I try to fall asleep before my muscles stiffen again and I start aching.”

22. “Foam roller is my best friend! I use it when it’s too painful to sit. I will prop myself up against it and it helps.”

23. “Something that has been really helpful is my occupational therapist recommended a wand ‘massager’ like a Hitachi wand to ‘confuse the nerves’ with the strong vibrations. Because of the rubber head I can really push it into my trigger points during a flare and it will help relax them after a while without as much bruising. I have fallen asleep lying with that under my right glute several times in the last month.”

24. “I write. I’m an author, and it helps me get away from reality. My doctor gave me amitriptyline. I take two pills for the days I’m desperate to sleep, but usually I take one every other day and it takes a few hours to kick in. But I eventually drift off. No matter what. My tablet helps during the time the pills are kicking in and I can’t hold a pen.”

25. “I scream at the top of my lungs. Feels good to let it out!”

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Thank You to the ER Professionals Who Treated Me With Caring and Respect

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I think many people who have dealt with chronic illness for a long time could share stories about some really horrible experiences in the emergency room, or when inpatient in the hospital.

Today, though, I want to share a story about the incredible doctor, nurses and orderly staff I had in the emergency room last week.

I was so incredibly sick. Had been to the ER the night before. It was an OK experience, but they weren’t able to help me. My blood work looked fine. The next night, we wound up having to call an ambulance. When they got to my place, they did an ECG and took my temperature. I had a fever of 105.9.

 

I wasn’t sure if they’d help me but I was too sick to not be in a hospital. I couldn’t keep any of my antibiotics, pain meds or other meds inside my body. I was sicker than I’ve ever been in my life, and that’s saying a lot, because I’ve had septic infections that were easier to deal with than this.

The nurse came in and was very nice and said I was one of the few people there on that busy night who actually needed to be there. Then, the doctor came in and he said, “OK. You’re going to be here for a long time and I’m going to help you feel better. Your dental infection should not cause this high a fever, so I’m going to be doing all kinds of tests, and you are going to wonder why, because it’s not what you’re here for. But I want to know what’s going on. I’m going to get you IV antibiotics, IV pain meds, zofran and some fluids. Hang in there. I’ll help you feel better.”

For the first time, a doctor said it in a way where I believed it. He was going to help me feel better.

I was so relieved. I expected the pain medication would not be as strong as what I’m prescribed, because I’m prescribed a strong one, but he actually gave me stronger pain medication than what I take. The pain relief after so many days of agony was indescribable. I truly believe that him getting my pain under control helped me over part of this illness hump that four and a half weeks of antibiotics hadn’t yet helped. He also did two identical sets of blood cultures, from two separate veins, to ensure adequate results. This led to him knowing exactly which two IV antibiotics to start pumping into me. The zofran he gave made it so I could finally stop heaving. Tylenol got my fever under better control.

He was amazing. Friendly. Very meticulous. Helpful. He came to talk to me after getting some results in, and he said, “Your main blood work is fine, but that doesn’t mean nothing is wrong with you.” The blood cultures showed it was purely a bad dental infection plus gastritis. But my main, basic bloods did not show much, so, if he hadn’t done those cultures, I may have been sent home without the proper antibiotic treatment.

I went in thinking I would be very sick and in the hospital for a least a couple weeks. The doctor seemed to think so as well. But, his incredibly accurate antibiotic choices, due to him doing blood cultures, his pain control and fluids, and getting my fever under control, made it so my body was starting to recover just six hours later. It was like a miracle. I went from being so sick and feverish that I wanted to escape the incessant hot/cold skin and thinking it would take ages to recover,  to feeling almost euphoric that I could stand being in my own body again. My swelling in my face, from the infection, started to improve. It was amazing. I felt well enough to go home.

But another thing that helped was being treated kindly. With caring. I wasn’t judged for being a chronic pain patient, on chronic pain medication. Given a more than adequate substitute for that medication because my body was unable to take my pills. This was such an enormous blessing, to have some relief from the agony and to not be made to feel ashamed about the medication I take.

When I was allowed to go home, I couldn’t stop myself from constantly thanking the doctor. Telling him I was so grateful. I felt so much better! I heard him go and tell other doctors, “Isn’t this nice!!! She just thanked me so much, and said I’ve helped her feel so much better!! When does that ever happen?!”

I wish it happened to doctors like him all the time. Because he was truly phenomenal. I will never forget him and his treatment of me and how much he helped my health and my being. My dignity. It will make it easier for me to go to the hospital in the future, instead of delaying until it’s almost too late, like I used to do because of awful experiences. If I have another bad one, in the future, I will remind myself that there are also good ones, like him.

Knowing there are amazing doctors and nurses out there who truly care about helping you feel better makes being sick a little bit easier. Medical professionals like this should be celebrated as often and as loud as we complain about the poor ones.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Spotmatik.

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