woman lying in bed

One Night Inside the Head of a Person With Painsomnia

1k
1k

It’s 5:45 a.m. as I’m beginning to write this. While my mom’s phone is buzzing with alarms and I can hear the frantic noises coming from my neighbors who are probably getting up to go to school or work, I’m lying here, wrapped up in my blanket and thinking of ways to manage this terrible pain. I have had insomnia from ever since I fell ill, almost six years back and over time, it turned into painsomnia, a condition where you are unable to sleep because of physical pain.

This is nothing new for me because I spend nearly every night like this, waiting for the pain to pass, waiting for sleep to come.

Last night was the same. I lay in bed on time and have since been shifting and turning, changing positions in hope for the one that finally makes me fall asleep. Some nights it’s just insomnia without much pain, yet most of the nights from past few months have been spent literally wriggling in pain, sometimes groaning and crying and praying for Lord to grant me at least some sleep.

This night was no different. I lay in bed, burning pain travelling up and down my spine and radiating into my shoulders, arms and hands.

You must be wondering why I just don’t take some medicine?

You see, because I also have severe irritable bowel syndrome (IBS), taking almost all medicines causes side effects (and before you suggest, let me tell you that I have tried everything I could to help me fall asleep already).

And because I can absolutely not bear anything related to my IBS, I prefer to stay in pain most of the time. But there are days and nights (because we are talking about nights here) when I give up and take medication for my pain. It hurts in other ways but at least I get a couple of hours of sleep. Today, however, I am not doing it. I’m going to bear this pain because I’m not well enough to handle the side effects just to be free of pain for a few hours. It’s always a choice for me: to bear the symptoms or the side effects. It just depends on what I choose that day.

woman lying in hospital bed giving thumbs up sign

It’s difficult to be chronically ill in general, to be in immense pain and to have your body behave in a way you never thought was possible. But it’s even worse at night, when everyone’s asleep and you are curled up into a tight ball, clutching yourself hard as if trying to shove away the pain and other horrible symptoms.

As I lie here, I can’t help thinking about how different it would be if I was well; if I didn’t have to go through this; if I could just lie on bed and fall asleep instantly without my illness interrupting every few minutes to make sure I didn’t forget it.

Sometimes I feel like talking to my illness, like to practically seize it up and tell it that it has been living inside me for almost six years and it’s time now to go away forever and never once show its ugly face again.

I wish that was possible and that I didn’t have to spend tonight; every night struggling to stay sane, forcing breaths into me and trying to be quiet as I sob tearlessly into my pillow fearful of waking up my family and causing them unnecessary worry.

Even though they are the most caring people one could come across, I feel like I should let them take some rest given how they spend every minute, day after day taking best possible care of me.

The sun is beginning to come out and outside the window, sky is a mix of bright yellow and very dull blue. The constant chirping of birds and chattering of people is enough to let me know that another long night has passed without the tiniest hint of sleep.

It’s 6:14 a.m. now and I know this sounds like a diary entry more than an article, but I wanted to give a true account of how I struggle through endless nights wishing for sleep and peace.

I wanted to let you all know that you are not alone. If you are reading this while struggling in pain and wishing for a peaceful night, know that many others are, too.

By sharing this little account of my pain-filled night, I aim to let people know that millions of us are together. We are together in our pain, together in our nausea, together in our dizziness, together in our fights.

While it may seem like you are alone when you lie on your bed fighting painsomnia/insomnia, it is certainly not the truth.

We are all together.

With this, I would like to leave (well, because my pain is beginning to increase and so is my brain fog which has begun to clog up my head now, blocking any coherent flow of words).

I hope my little experience makes someone realize that there is someone out there, struggling just like them.

And I hope you know that you are never alone; that you will get through this; we will get through this.

Until then, one day at a time.

Oops.

One night at a time.

Find me @its_little_ayra on Instagram where I share my chronic illness journey and the ups and downs that come with it.

1k
1k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When Pain Is the Only Thing Certain in Your Life

386
386

I have been thinking a lot lately, perhaps a little too much – but I can’t help it. I am left wondering each and every day just what it is really like to experience a life that isn’t plagued by chronic pain or illnesses.

What is it like to not have to pick between the things you know will inevitably make you end up in bed for three days? Or the feeling of a fulfillment after a hard day at work, followed by a restful sleep?

The future for me and my health is widely unknown, which scares me more than I would care to admit. The only thing certain for me is pain; excruciating and debilitating pain. I turn 19 in two months, but I already feel half a century older than everybody else my age because I have been chronically ill for over half of my life.

I am not resentful for those who will never experience the extreme pain and fatigue that having multiple chronic illnesses ever so kindly gifts to you; however, I am awfully jealous. It makes me truly sad to know that I neither will nor can never grow out of this pain; nor will I never “get better.”

But I refuse to let the worst parts of me define the best parts of my being. I will continue to fight against my illnesses fight for not only my life, but my happiness and my dreams too. If I had one wish that would be indefinitely granted, I would never wish to be pain-free… I would wish for more awareness.

Nobody should ever have to go through life where every doctor has told them that their pain is “all in their head,” nor should it take half our lives to get a diagnosis to prove our pain is not an illusion created by our own minds. We should never feel so alone and isolated in our pain that we are forced into being silent. We deserve to create awareness for our own illnesses. We do not have to put on a “brave face” for the sake of someone else.

Although our illnesses are invisible – we will be heard. If we continue to share our stories and illnesses, we will have to be listened to.

Chronic illness is the hardest lesson to learn, but is the best teacher I have ever had. I am grateful to my illnesses for teaching me more about myself than I ever thought was possible, even though they were the hardest lessons I have ever had to learn.

I am exhausted and I am in pain, but I have learned that it’s OK to be frustrated with my body. But it is never OK to compare yourself to another person, especially a healthy person. You may never be healthy, but you are doing your best to continue to live as comfortable as possible with chronic illnesses. Sometimes that is an impossible task but you are doing amazingly well and I believe you can continue to do so.

No amount of pain ever has to define you. Although pain can limit you and prevent you from doing things in life, only we get to decide if we are defined by just our illnesses alone.

And no matter what, you are a fighter.

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

Lead photo by Thinkstock Images

386
386
TOPICS
JOIN THE CONVERSATION

When I Realized My Chronic Pain Meant I Could No Longer Have a Dog

342
342

Over five years ago, in the midst of our divorce, we had to put down our beloved 12-year-old golden retriever, Lila. In many ways, it was every bit as difficult as the divorce itself. She was my confidant and non-judgmental friend and I loved her like she was my own child.

I knew that I eventually wanted to adopt another dog but I was concerned that I might not be able to manage the responsibilities of caring for one. Even with a cane, I’m not able to walk very far without exacerbating my leg pain.

However, it was the need for companionship that convinced me to give it a shot. Like most of us that live with chronic pain, we tend to think we can do more than is sensible.

After talking to veterinarians, friends with dogs and doing my own research, I decided that basset hounds had the kind of temperament that might work for my circumstances.

Fortunately, for me, there was a wonderfully caring basset hound rescue group in my area that made the adoption process incredibly easy. I told them what characteristics were important to me (housetrained, spayed, under 50 pounds, etc.) and, eventually, they matched me with Mabel.

It was estimated that Mabel was about 7 years old when she, and her brand-new litter of puppies, were abandoned by the side of the road. After her rescue, she lived with foster parents while she recovered physically, got microchipped and received her updated shots and treatments.

Finally, a transportation volunteer for the rescue group brought Mabel to me and I fell in love before the door shut. It immediately appeared that her primary goal in her short little life was to let me love her. Success!

However, it became evident after a few days that she was having trouble maneuvering around someone who walked with assistance. Whether it was going for a walk or even just getting around my apartment, Mabel would bump into my leg or my cane in a way that caused me to lose my balance, trip and often fall.

Of course, those of us with chronic pain know how that kind of trauma affects the balance of our day (#spoons) and the cumulative effect of those falls quickly amped up my pain to a higher level, leaving me virtually unable to care for her later in the day.

I kept telling myself that she would learn and we’d be OK, but I eventually realized that she was just being her doggie self and it was selfish for me to expect her to accommodate my disability. After all, it’s hard enough for some of our fellow humans to do it.

I heard about others who walked with a cane and had made it work with their dogs. I tried as many variations as I could think of to avoid the negative manifestations of her excitement, but I was tripping more and felt my agitation increasing along with my pain. That’s the trigger pet lovers watch out for – getting angry at your animal for something that’s not their fault.

I absolutely hate that Mabel will now have to make a transition to another home. Despite her brief time with me, I desperately miss her pressing herself next to me on the couch, even lying across my lap despite how much it hurt. I miss her little Elvis sneer and her silly dance when she knew she was getting a treat. And those eyes, oh my God, those sad basset eyes. My heart is broken. Again.

I honestly think this is the first time in my 16 years with chronic pain that I’ve asked, “why me?” If it’s possible, I’m angrier at my pain than ever for taking so much from me. If I can’t handle a dog as sweet and loving as Mabel, I don’t think I’ll ever be able to have another one. Once again, the pain that never takes a sabbatical has robbed me of another joy that I used to take for granted.

Be well, Mabel. You will always be with me.

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

342
342
TOPICS
,
JOIN THE CONVERSATION

How to Let Go of Holiday Season 'FOMO' When You're Ill

18
18

FOMO, otherwise known as the “fear of missing out” may be a newer acronym, but is an age-old concept. Unsure if you’ve ever really felt the icy sting from being victimized by FOMO? How about this: Have you ever said yes to an event that you didn’t think would be fun, just because all your friends were going? Have you ever gone and watched a movie because everyone else was talking about it? Watched a YouTube video simply because it went viral?

The example that solidified my own FOMO was the amount of time I spent checking social media. I could spend hours on Facebook scrolling through my feed, agonizing over how perfect and fun my friends’ lives seemed. I saw perfectly crafted Instagram feeds with gorgeous photos that were aesthetically pleasing. I saw tweets upon tweets detailing adventures abroad, engagements, marriages, university degrees and more – all while I sat and longed to be doing something different.

It’s not that my life wasn’t enough or that I didn’t have endless amounts of things to be grateful for. That’s precisely not it. It’s the feeling that enough is never enough. There’s always something more, something different you’re missing out on.

The holiday season only increases the FOMO I already seem to feel. You see pictures of wintery vacations, family gatherings, seasonal cheer. The FOMO, when dealing with chronic pain and mental illnesses alike, can skyrocket.

Seeing pictures of people enjoying skiing or snowboarding when your chronic pain and injuries are only worsened by the cold? FOMO.

Seeing pictures of holiday treats when you have an eating disorder and the thought of eating without intense fear and anxiety seems impossible? FOMO.

Being asked to go ice skating with a group of friends at the winter rink set up in your town and feeling pressured to attend? FOMO.

Seeing calendar invites to a big company holiday party and feeling anxious just imagining the crowd but still considering attending? FOMO.

It’s hard to let go of fear. It’s often not as simple as just choosing not to feel it. Unfortunately, emotions don’t work like that. But I have accumulated a few coping skills to turn to when the inevitable FOMO strikes:

1. Remember that social media is constructed.

No one’s life is what it looks to be on social media. Those Facebook posts, Instagram pictures, tweets, etc. are just a part of that person’s life. Think of social media channels as someone’s highlight reel. People are going to pick and choose the best and most post-ready moments of their lives to share – not the grubby, down-and-dirty toilet-scrubbing pictures.

2. Remove yourself from social media.

It’s not the easiest step to take for a lot of people. Social media definitely has its benefits, but when in a cycle of FOMO, even just deleting your apps from your phone and leaving your accounts active for you to use if you choose can be beneficial. Don’t want to delete? Turn off notifications. Reflect on what social media is for you and the pros and cons of having it in your daily life and proceed from there.

3. Accept you’re always missing something.

No matter what, you will always be missing out on something in life. You can’t be doing the coolest or most interesting thing 100 percent of the time because you’re a human being and have limits. Once you accept this truth as inevitable, try to move on.

4. Cultivate gratitude.

It may seem silly to some people to simply focus on the things you’re grateful for, but gratitude is key in helping ease FOMO. Write down a list of the things you’re grateful for in your life. This could be people in your life, things you can do, circumstances – the list is endless. The key is to focus on the good in your life instead of dwelling on what you don’t have or can’t do.

5.  Do something you enjoy.

When in doubt, if you’re struggling with FOMO, turn to an activity or pastime that is easily accessible and that you enjoy. Don’t let what you’re missing out on stop you from doing what you love. Don’t let fear run your life.

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

Image via Thinkstock.

18
18
TOPICS
, Contributor list
JOIN THE CONVERSATION

What You Should Know About People With Chronic Pain During the Holidays

TOPICS
, Video
JOIN THE CONVERSATION

I Don't Owe You an Explanation When I Do Something Fun Despite My Chronic Pain

2k
2k

Having any type of chronic pain condition can make it difficult to find the time and energy for fun. As if this isn’t enough, then we often face the judgement of others when they notice us out in public appearing to have a good day. Yet little do they know we’re still struggling, but we’ve chosen to push forward with a smile on our face to attempt to cover up our pain. Trying our best to enjoy ourselves no matter the price we’ll pay.

As a woman, freshly 40, living with multiple chronic pain conditions I still want to live life to the fullest as so many others do, too. My conditions already limit me, therefore I refuse to allow other people’s judgment to limit me even more. We owe no one an explanation for our enjoyment!

I’ve always enjoyed baking. Baking for my family and baking for the holidays. I’m proud of my baking skills and I’ve been known to post pictures of my goodies on Facebook for family and friends to see. Unfortunately I’ve also endured the judgement from family because of these photos. Just because you talk to a family member and they tell you how bad I’m feeling doesn’t mean I’m not. I think about my husband and children, how they deserve to enjoy homemade goodies. I say quite often, “I’m not ready to lay down and die, I’m fighting back each day to live and do the things I enjoy most!” Instead of judging me, be proud of me for living!

I’m the typical woman; I love a day of shopping in the city at all my favorite stores. You have no idea what it takes for me to just get out of bed in the morning let alone ride an hour from home, shop ’til I drop and then ride that hour back home. I sometimes pay the price for days after. I’m just trying to “live,” I’m not asking to be judged. Instead of judging me for enjoying a day of shopping, praise me for putting both feet on the floor each morning, a smile on my face and going when my body wanted to stay in bed.

Being on the water is one of my utmost favorite places to be. Aside from the time it gives me with my husband doing something we both greatly enjoy, fishing, it also provides the peace, relaxation and tranquility I sometimes need just to calm my mind. I might have to ice my spine later that night or plug in my heating pad, but rather then passing judgment, be happy that after 12 years married my husband and I are still making time to do the things we love together.

The big “Black Friday” shopping event has always been one of my favorite things to do each year around the holidays. Anyone who knows me knows being a savvy saver is something I take pride in. Having chronic back pain and fibromyalgia definitely make this event a difficult one for me however I refuse to allow it to take away from me being a part of the savings. Besides, with me being disabled and unable to work it’s a great way to get my loved ones some great Christmas gifts and save some money while doing it. You might see me standing in line for an hour waiting for a game my son wants, but what you don’t see is the severe back pain I feel on the way home or the muscle spasms my body hits me with because I’m trying my hardest to “live” with fibromyalgia. I’m trying to give to my family and at the same time save some money that my husband solely works hard for to provide for his family. Instead of judging me, ask me about all the great deals I got or praise me for putting others wants in front of my needs.

For our most recent wedding anniversary my husband bought me the gift of acrylic nails. This was my first experience with acrylics ever so I had no idea that having fibromyalgia could and would effect my great gift. Just from the heavy filing to shape and even my nails I found my fingers in horrible pain at the end of the day. My arms felt as if they were plugged into a light socket with nerve ending pain sparking throughout them. My point is, sometimes those of us who have a chronic pain condition don’t even know what the condition will lead us to, so please don’t judge. I can tell you this is a gift that I never want again because there are some prices not worth paying; this for me is one of them. However, for as long as I am breathing I will continue to have fun, try new things and make the choice for myself whether or not it’s worth the price I’ll pay so that I can continue to “live.” My hope for you is for you to think twice about judging me or anyone else living with a chronic pain condition.

Living with any type of chronic pain condition is an extremely difficult task, let alone dealing with the judgement that can come with it. We shouldn’t be judged by anyone, let alone feel guilty for trying our very best to live. A person can never fully say what they would do when put in a situation until they are 100 percent fully in it themselves. So to the onlookers watching our every move, please don’t judge us for attempting to have some fun, enjoy our life and live with the chronic pain we didn’t choose to have.

To those of you living with any type of chronic pain condition(s), don’t ever apologize for having fun or attempting to live your life that has been changed by chronic pain. You’ve chosen to keep on living and this my friend makes you a survivor, not one to be judged for trying to “live.”

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

Lead photo by Thinkstock Images




I Don't Owe You an Explanation When I Do Something Fun Despite My Chronic Pain

2k
2k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.