Painsomnia Archives - The Unchargeables

The term “no pain, no gain” was mostly used by personal trainers to encourage their customers to endure the pain of exercise in order to get fitter, which I understand, but it’s also used as an inspirational phrase that tells people they must go through hardship to reach happier times. The phrase being used in this context is what bothers me. Inspirational speakers used to come to my high school and say things along the lines of “no pain, no gain”, or “whatever you’re going through, it will get better,” and every time they did, I wanted to throw something at their heads. I know they meant well, however, hearing this phrase makes me feel… Inadequate. Like, if pain equals gain, what do I have to show for it? The main issue in my life since the age of 7 has been chronic pain, and I doubt it will get better any time soon; if anything, it’s getting worse.

Sure, I’m pretty happy with the progress I’ve made in the past year, having started a business degree at university and having moved out of my parent’s house. However, it feels like if the equation pain=gain is supposed to be correct, the amount of pain I experience on a daily basis far outweighs the gains I have made (pain>gain). How can something I experience every second of every day be dismissed as a bridge to a happier life? I may be seen as extremely sensitive for writing this article, however, I’m not the only person with chronic illness who doesn’t like this phrase.

Pushing Myself Too Far

Not only do I dislike the subtle connotations towards pain within this phrase, I dislike that it also tries to teach us that we have to push ourselves to our limit in order to gain anything of values . As I’m sure you know, pushing yourself to your limit, especially when you have a chronic illness, can be extremely dangerous. My physiotherapist used to tell me off for pushing myself too hard; I was sacrificing my health and my quality of life because I thought I had to push myself to the edge in order to get anywhere. I would “boom and bust”, exercising day after day until I could barely move after, having to rest and recover for a few days to a week because I was too sick to function and then doing it all over again. Sure, I was losing some weight and was active, but at what cost? It was a toxic cycle. My pain levels were constantly high… well, higher than my normal high levels, and my capacity to function mentally suffered along with my physical ability.

Now, I’m doing better. I’m coping with school, however, I don’t exercise as much as I would like. By doing one, I have to sacrifice the other. Otherwise, I’m sacrificing my ability to function at all. It’s a fragile balance that many people with chronic illness have to maintain.

What I have lost

As the result of chronic pain, I have lost so much. I lost the second half of my childhood. I have lost my quality of life, my enjoyment of physical activity, and my independence. Every day is a struggle. I struggle to get out of bed, I struggle to get ready, I struggle to do housework. I had to give up studying the degree that would lead to my dream career because I couldn’t cope with full-time study.

There are days when I feel so incredibly useless. I can’t remember what being pain-free feels like. The pain is always there, reminding me of what I lost and what I can still lose. It feels like, as someone with a chronic illness, I have to work five times as hard as someone who doesn’t have a chronic illness or a disability to achieve the same result. And that hurts.

There Have Been Some Gains

In order to disperse some of the negativity in this article, I thought I’d discuss some of the gains I have made during my chronic pain journey. One is that I am far less judgemental of other people than I used to be. Growing up with an invisible illness has taught me that I am in no place to judge other people by their appearances, when by looking at me, you wouldn’t be able to tell the magnitude of my suffering. I know what it’s like to have your physical ability accessed purely based on your appearance by strangers, and I wouldn’t want to do that to anyone when I know how upsetting it is.

Every time I fall, I get up again. Even if I need to have a little cry before I manage it.

Growing up with a chronic illness has definitely made me a stronger person. Chronic pain sufferers have to be extremely resilient in order to carry on with life. I put up with extreme amounts of pain on a daily basis, just to get things done, just like my fellow chronic illness warriors do. Every time I fall, I get up again. Even if I need to have a little cry before I manage it.

Learning Who My Real Friends Are

One benefit of having a chronic illness that I didn’t see coming is that you find out who your real friends and family’s are. Whether you’ve known them since before you became ill or met them along the way, the people who really care for you will do their best to be understanding of what you go through. It can be incredibly tough when family members are indifferent or doubtful towards your suffering. They’re your family and they’re supposed to love you unconditionally, but this isn’t always the case. I try to interact with people like this as little as possible.

I have gained and then lost some really toxic people from my life over the years. Having to cope with a chronic illness is one of the biggest tests a friendship can have. If they’re truly understanding and empathetic, then their friendship will last through thick and thin. Some people like to be friends during the good times and then leave when life gets rough. Fine, that’s their decision, but I won’t waste effort on people who don’t care enough to spend the same amount of effort on our friendship. My closest friends are the ones who have stuck with me for years, since the beginning of high school. I was already dealing with chronic pain, however, they were accepting of me and have been nothing but supportive since we met, despite the fact that my condition has done nothing but get worse.

My chronic pain journey has not been smooth. Not even close. I don’t like that pain is seen as this ultimate goal when people like me suffer from it every day. Chronic pain can be extremely debilitating, however, it seems to be hard to understand if you’ve never experienced it. The idea that pain is means to an end is, in my opinion, very harmful towards people’s attitudes with regards to chronic pain.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

Painsomnia, a combination of the words ‘pain’ and ‘insomnia’, is often used in the Chronic Illness community to describe the inability to fall or remain asleep due to suffering physical pain. People with Chronic Pain can often experience painsomnia, which can result in chronic fatigue.

Experiencing Painsomnia as a Child

I was about 7 years old when my parents first became worried that I was complaining of being in pain far too often. I complained that my back and hips hurt, and nothing seemed to ease the pain. My parents would struggle to get me to sleep every night. My mum tells me that I would constantly get in an out of bed, and they would often give me paracetamol and send me back to my room. All the tests that I underwent came back clear.

I remember nights when I would lie awake in bed before I even hit the age of 10, crying my eyes out, praying to God to take my pain away. I often wouldn’t settle and fall to sleep until about 11:00 pm. This, as you can imagine, left me very tired in the mornings, and it became a mission for my parents to get me out of bed and to school. I was a kid, and I didn’t understand what was causing my pain and why.

Growing Up with ‘Painsomnia’ and the Coping Techniques I Have Found Along the Way

Middle School Years

Skip forward to when I was about 11 years old. My pain had spread throughout my body, and I was no closer to getting answers as to why. After having coped with chronic pain for 3 years at that stage, I became burned out. Painsomnia was definitely a factor in this. I even started falling to sleep in class, despite the fact that I saw myself as a dedicated student.

As a result of my health, my parents enlisted me in a partial home-school program that was run by the public health service for children with health issues. This resulted in me only going to school 2 or 3 days a week. Before I reached high school, they slowly increased my hours at school again until I was back to attending school full time.

Around that age was when I finally received the closest thing to an answer I may ever get. One word; Fibromyalgia. This, along with CRPS (Complex Regional Pain Syndrome, which I was diagnosed with after an injury to my wrist that occurred when I was 13) is the source of my painsomnia.

Experiencing Painsomnia During Highschool and University

As I got older, my pain got worse and became more constant, until there wasn’t (and still isn’t) a moment of the day that I wasn’t in pain. Due to my increasing levels of pain, my painsomnia got worse. As a result of my painsomnia worsening, my level of chronic fatigue increased. And as a result of the increased fatigue, my pain got worse. It’s a vicious cycle.

It was during high school that I was introduced to some more of the symptoms that come along with painsomnia; I often found it difficult to concentrate during class and my memory suffered. This made studying for subjects such as the sciences and Calculus very difficult. Though I enjoyed these subjects, my grades weren’t all that high because absorbing the information was extremely difficult for me. I found that I did better in my more creative classes such as Photography, English, Graphic design, and Fabric technologies.

I fought my way through high school, and while at the beginning I constantly had sick days, by year 13 (my final year of high school) my attendance was above 90%. It wasn’t easy. Every day once I got home from school I was exhausted beyond belief. I could barely get out of bed for dinner. Luckily, my parents understood and weren’t too hard on me about my lack of extra-curricular activities. While at school I spent a lot of time in the nurse’s office, taking painkiller as prescribed every lunchtime and resting with a heat pack when the pain became too much.

Present Day

Skip forward to now. I’m 19 years old, and my sleeping patterns are tragic. I head to bed between 10-10: 30 pm. I then lie in bed, either reading or watching YouTube videos (with my phone on Night Mode) until I’m tired. Often, I may not become tired until 1:30-2: 00 am. To someone who does not experience painsomnia, this may seem like a very bad habit.

Growing Up With ‘Painsomnia’ And The Coping Techniques I Have Found Along The Way - woman awake in bed at night

However, if you suffer from painsomnia. no matter how early you go to bed or how strict you are about avoiding stimuli before bed, you aren’t going to fall asleep until you’re so incredibly exhausted that the internal war between sleep and pain finally comes to an end for the night… At least, until your pain wakes you up again during the night and the cycle begins anew. For me, distracting myself from my pain until I become tired helps me to fall to sleep much faster than when I lie in complete darkness, having nothing but my pain to focus on.

If left uninterrupted, after a late night of experiencing painsomnia I can easily sleep in until 10.30-11.30am. However, life doesn’t always allow that. Not only do I attend University on average 3 days a week, I also have to do everyday tasks such as shopping and errands that mean I don’t get to sleep in as long as I may like to.

My worst nightmare is 8:00 am classes at Uni. I live 2 hours and 30mins away from my uni by public transport. Once you factor in a 30 min leeway in travel plans (in case of transport failure) and time to get ready in the morning, this can result in a 4:00 am wakeup. This can leave me absolutely exhausted for the rest of the day, which of course impacts my ability to absorb the information that is presented in class.

Regardless of whether I wake up early or sleep in, I still struggle with my concentration and memory. This makes studying at University a challenge, but I plan to fight my way through it, just like I did in high school.

Techniques I Use to Cope with Painsomnia:

While painsomnia can often be inescapable, I have formed some techniques over the last decade that help me cope with it. The first is microwaveable heat packs. These are little fabric cases that are often filled with wheat that you can stick in the microwave and put on your sore spots. The warmth from these heat packs can help reduce the pain, muscle stiffness, and muscle spasms that may be the cause of your painsomnia. Alternatively, if you find cold more therapeutic than heat, you could use ice packs.

The second thing that helps me cope with painsomnia is me taking a magnesium supplement at night, which was suggested by my doctor. Magnesium supplements support deep and refreshing sleep, can reduce stress, and can also help with restless leg syndrome. If you think magnesium supplements may be beneficial for you, check with your doctor or pharmacist to ensure they will not react with any other medications or treatments you may have.

Another technique I recently discovered that assists me falling to sleep faster is listening to ‘sleep music’ as I try to fall asleep. Listening to slow, soothing music before falling asleep can help you fall to sleep faster and wake up less during the night. When I first decided to give this a go, I searched “sleep music” on YouTube, and listened to a few different tracks until I found my favourite one. It runs for 3 hours, so it even runs after I’m asleep (unless I’m experiencing severe painsomnia).

The last, and probably the most obvious, coping technique is napping during the day. Napping isn’t just for young children. Napping, especially when you’re experiencing chronic fatigue, can increase your concentration, can improve your mood, and can reduce stress. If you’re having a busy day, and know you have to be at your best in the afternoon or the evening, a nap can leave you refreshed.

Dealing with painsomnia on top of your other chronic illness symptoms is exhausting. Especially so for a child. I’ve dealt with painsomnia for around a decade now, and though I haven’t yet gotten rid of it, I have discovered techniques that can help me, and that will hopefully help you, cope with it.

Category: Painsomnia

No Pain, No Gain. A Harmful Statement (To Those Who Suffer From Chronic Pain)