Living with chronic pain

Living with chronic pain is something I’ve spoken about a lot here on the blog over the years, and it is pain awareness month so let’s get into it.

Everyone has at some point felt pain, whether it is from doing too much at the gym, a broken arm or a sting from a bee. It is a warning that an injury has occurred and once that is healed there is no pain anymore. Long term pain however is far harder to understand and that is why most people cannot imagine what it is like to live with pain all the time.

Chronic pain is:

Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment. Most people get back to normal after pain following an injury or operation. But sometimes the pain carries on for longer or comes on without any history of an injury or operation.
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This is difficult for most people to both understand and imagine living with and that is why after a while people around us stop feeling empathy. Because that heavy, pain that they have felt for a short time always had an end or went away with medication and ours does not.

We still have dreams we want to fulfil; we still need to spent time with loved ones, go to work maybe, and live our lives. On days when it is too much we stay in bed or curl up in the sofa barricading ourselves in with blankets and fur babies for comfort. Most people do not see us on our difficult days and so they cannot get the picture of us on good days out of their minds.

This could be why we are often met with comments like, “you look well” and “you don’t look sick” because they only see us on the good days. However, comments like this make you feel like you are not seen, like you live two lives the good days separating the bad where we have not been able to shower for days, and the pain leaves us crying.

I have spoken before about how awareness days and months help us raise awareness in the hope that people realise the pain is still there even if we are dressed and smiling. If we are out in town our pain might give us enough time to do a few tasks before we are sent back to the sofa fort to recover.

We are not well or better on these days; we are simply living with chronic pain no matter what illness holds us in our fort. On those days we are faking being a pain free person, trying to grab hold of the life we usually miss out on.

Those are the days I try to vlog on my YouTube channel, to capture the day out or to show off the things I thrifted when I was able to go to town. My reality is far more often spent on my sofa with my dog than out in the world, this is something I’m trying to be more transparent about. To show that yes, I have bad days and no I don’t often get to pretend to be well.

Living with chronic pain is not easy, it is full of nights laying awake in too much pain to sleep or acting like you are not holding back tears at family dinners. It’s watching the world move around you, doing the things you want while you are unable to cut up your dinner because of pain and fatigue.

I am trying to explain what it is like, but the truth is that it is impossible to really tell you what it is like so you can understand, but I will try.

What my pain is like

My personal pain if different to everyone else even if they have the same illnesses as me, Ehlers Danlos Syndrome, Fibromyalgia, and ME. Every illness affects every person differently so here is my best explanation of my pain.

My arms and legs always feel heavy and have a very similar pain feeling to doing too much at the gym. A low annoying buzz of pain that makes me want to not move so I won’t hurt anymore, but this pain is not from working out too much. Because of that, I push myself to walk and move like normal even with my brain screaming at me not to.

My spine has a lot of pain in the top half of it, a dull nerve pain that sometimes takes my breath away. On top of that (literally) my neck is very painful to move, especially to one side where movement is a little restricted.

On cold days my hands can go a very pale blue and feel very cold, the knuckles hurting regardless of the weather. I often find myself cracking my fingers in an attempt to stop this pain, but it rarely works and sometimes makes it worse.

Then we have what I call the roaming pain, this is a stabbing pain that comes from nowhere and can be in any spot on my body. Right now it is just below the outside of my right wrist, the skin itself always feels bruised there and sometimes even clothing can hurt. This roaming pain is my least favourite!

I also have an almost constant headache, and occasional migraines that like to join the party from time to time. I sometimes take extra meds for the headaches, but generally they are like background noise to the point that I only notice them on a day they are not there.

The last of my pain is between my ribs, this is a sometimes pain, that feels so overwhelming like a really bad cramp. But because it is between my ribs, I cannot take a full breath and it can be a little scary people with me when it happens often think I’m having a heart attack.

Now imagine having all this every day, all day, whether I’m in cute clothes on Instagram, or out shopping it’s always there. I take medications every day to keep these different pains at a level that I can cope with, but nothing will take it away completely. That is actually not the goal of chronic illness patients, we know our pain will always be there we just want to be at a coping level.

So, next time your friend or relative is out and you see them please don’t ask if they are better, it’s just a day they can be out.

I hope this helped you understand what living with chronic pain is like and that you will start to see why so many of us struggle with life.

Thank you xx