Today I am going to try and explain what it is like to be in 24 hour pain. The reasons behind this post are simple, I am getting a variety of questions from concerned loved ones as to what my life is like and I cannot answer them. Questions and statements like, "Well have you taken some paracetamol" or "you just need to get more sleep" have become the norm in my life and although I know that the people asking them care, these kinds of questions make it so much harder to explain as you get the feeling people are simply telling you to pull yourself together and carry on.
I know I am not alone in this, millions of us live in pain for our whole lives and one thing I want to make clear is that although that sounds negative, it can be turned into a positive....trust me, you will learn to live a happy life even when the pain grips you ten fold. So here is my explanation of the realities of constant pain and why I don't moan about it.
What is my pain like?
Gosh this is an impossible thing to describe and I am well aware that people reading this will not understand, but giving it a go may help others to come to terms with their own journey. My pain has become a friend and an enemy over the years. sometimes it consumes me and days are a long, hard slog. Other times it is a reminder to slow down, take a break and enjoy life at a relaxed pace.
On an average day I will wake up with a burning sensation within my bones. Here is something I want you to try. Sit where you are and feel your bones, move your legs, toes, fingers, jaw. Become aware of every bone and muscle within your body and how they function. Just close your eyes and be aware of your skeleton. It's a really odd sensation isn't it. I mean we all know we have a skeleton and muscles, but in reality how often do you feel them all at once.
I feel my entire inner skeleton every minute of every day. The burning pain that I experience is throughout every single inner fiber in my body as a constant, low lying ache. I am aware of the slightest twitch of a muscle, or movement of a toe and this is not segregated to the smaller inner factors...oh no....my thighs, calves and even spine enjoy to get involved too. Writing this I can feel all the movement that my hands, arms, shoulder blades and spine are making in order for me too type. This is just an average day.
Now take a bad day. Being constantly aware of your skeleton through burning pain is one thing, then add in sporadic stabbing pain, cramp or the feeling of your bones breaking and you will get the idea. On a bad day I will feel as though if I move suddenly or put too much weight on my foot, the bones within will crumble to dust. Try eating with a throbbing jaw bone that is stiff, or getting legging on whilst balancing on a calf that feels like it's shattered. It's not fun or pleasant.
Finally, this is not just about my bones and muscles, oh no that would be too easy. Some days I will wake up to burning skin, stomach cramps throughout the day that will have me doubled up in pain and headaches that are blinding.
What it is like to function in this kind of pain.
Simple answer....it is damn hard work. Physical pain is one factor as you have to consider your mobility and how you will physically do the things you have to do throughout the day. However this is not as hard as the mental factor.
Yesterday I was explaining to a friend that I was having a really bad pain day. They believed the pain was wore that day than on other days. The reality was that the pain was the same level, it was just winning over my mental state. I was aware of the pain all day long.....making for a very long Monday....and because it was getting to me I couldn't grit my teeth and bare it. It is understandable that people would believe the pain had got worse that day and then other days I am pain free as this is how "normality" is perceived. However my normality is constant pain that just gets mentally harder on some days than others.
A normal, average day is mentally demanding. Imagine a time when you have been in pain; maybe you broke an arm as a child, or you were stung by a wasp. You felt a period of feeling sorry for yourself which is more than understandable. Plus in the case of a broken bone, they take a long time to heal so the feeling of "when is this going to end" probably got you down to an extent. Now consider how you would have felt if you were told the pain would never go away? This is the reality of how I live every single day.
Functioning on any level when in constant pain is almost the opposite of how we are told to live. You have to become aware of your limitations, things that will trigger a pain storm, how your emotional state is, even how you will get dressed in the morning. It is mentally TOUGH! You have to remain positive, strong and fight something that is constantly trying to drag you down into a pit. Plus then you have the realisation that tomorrow will be exactly the same and the day after that and so on. It is no wonder I will have days like yesterday where I cannot fight it and so I feel it. Not having an end is often the hardest thing.
It takes so much mental strength to smile, grin and bare it, that by the end of the day I am so exhausted mentally that I can only function on the most basic of levels. Please never believe that because I smile I am well, the smile is there because it is easier than explaining the truths. The laughter is there because it's better than crying and most of all I don't moan because it wont change a single thing.
What do I do for the pain and what doesn't work.
There are many things that I can do for the pain to help myself through tough days, equally there are many things that simply don't work for me, that would work for someone with a broken arm. This is where peoples understanding of chronic pain and intermittent pain differ so widely. So here is as much of an explanation I can give.
Chronic, constant pain is as debilitating as the disease itself. For me, pain killers such as paracetamol or ibuprofen do not work in the slightest and as the years go on even some of the stronger pain killers wont take the edge off. So nowadays I try to go without as much as possible as the only medications that do work are codeine based and I don't want to take them all the time.
Here are some of my methods for easing the pain as much as possible;
- Heat and cold - alternating between ice for swollen joints and a hot water bottle for stomach cramp does help to take the edge off the pain and make me comfortable. I even have a hot water bottle in work.
- Orthopedic bedding - a V shaped pillow is a must for me to help counteract neck, spine and leg pain.
- Warm baths - obvious really.
- Distraction - one of the most useful tools
- Some codeine based tablets - when I absolutely have no other choice.
- Deep heat - I could bath in this cream at times.
- Gentle exercise
- Rest and sleep - although I can be comfortable, rest and sleep do nothing for the pain levels at all.
- Over the counter pain killers
- Ibuprofen Gels/Creams
- Bandages of any kind. Sports supports do help occasionally but strapping every bone up is impossible.
