Chronic Pain and Living with it!

Unless we are extremely fortunate, we all will have had to deal with various degrees of pain in our lives. Sometimes it can be short-lived and sharp, other times it can throb and can go on for hours and days.

What if our pain never goes away? What if every day we struggle with our pain? And at what point do we start to do something about it?

Chronic pain and bladder cancer

Firstly, let me say that chronic pain is one of the most debilitating things to have ever happened to me. It is defined as pain that lasts longer than 12 weeks, even though you have been receiving treatment and/or medication.¹

I would describe chronic pain as large amounts of pain, on and off. There are no two days that are the same. Some days it is agonizing bone pains in my legs. The next day it could be the pain of my upper body being twisted into an acute spasm, leaving me unable to catch my breath and rendering me frozen with unbearable pain.

And some days the pain is at a minimal level - yay!

Psychological well being

Pain is tiresome it can drain you and have a detrimental effect on your mental health. It can make us act out of character.  It is all-consuming and you feel like it will never end.

Pain diary

One thing that I would like to add: it is extremely helpful to keep a "pain diary." It doesn't have to be anything fancy or in huge amounts of details but grab yourself a diary or notebook and start writing.

The key details you need are the date that you are writing on and a pain description. Maybe include answers to questions like where is the location of the pain? Is it red or inflamed? What level of pain? This could be a number between 1 and 10. How do you feel? What mood are you in? Are you emotional?

It can be as detailed as you want it to be. You can include what medication you had that day. The sky is the limit but this does give you a useful tool when you go to your doctor. You have everything that they will want to know right in your diary.

I think this is such a great idea and I really must practice what I preach! I start off well and end up scribbling - P for pain, FP for flipping pain, LP for leg pain - you get the idea.

Exercise

I promise that I am not going to lecture you on exercise and its health benefits, those are obvious by now, right?

Walking has the ability to help lower our blood pressure. Walking also releases all those happy chemicals from our brains and gets us feeling great about ourselves. The vitamin D from the beautiful sunshine is an added bonus.

We all know that exercise is important and I know from my experience that when I am in pain, I don't want to exercise. I want to curl up into a ball and rock myself on my sofa until it passes. But it is so vital to try to remain mobile. It doesn't have to be much. Even if it is just climbing the stairs or going into the garden and back again.

Sleep

Sleep is so important. We sleep to allow our bodies to rest and heal but what if we can't sleep due to pain?

Tips for better rest

• Keep on top of your pain medications. Set some reminders on your phone if you think you will forget to take your medications or write them down. I have a 7-day pill organizer which allows me to sort out my medications.
• Routine. Try to set yourself a small routine before you go to bed. It may help your body to wind down. Have a bath, cup of tea or cocoa, whatever you do try and repeat this every evening. Your mind will soon recognize your routine and will recognize that bedtime is close.
• Have a bath before bedtime with some nice calming essential oils, like lavender and chamomile. Clary sage is also a favorite oil for supporting my mood.
• Make your bedroom a place to sleep. Use dimmed lights and ensure that your curtains are double-lined or use blackout curtains. Make it a place you want to be.
• Heat and ice. Both of these can be extremely efficient in helping with pain. Heat works well for muscular pain and back pain and ice is good for any sprains, headaches, and fever.
• Try sleep apps. There are many sleeping apps out there with a plethora of features to help you stay informed on the details of your quality of sleep.

Sometimes you just can't sleep. Get up and go get a cup of tea or make yourself comfy and watch a film. Everything always seems worse in the middle of the night and pain is no exception.

Speak to your doctor about being referred to a pain management consultant [doctor]. They will have the expertise to help you, both holistically and medically. Keep in mind that more medication is not always the answer.

Nutrition and inflammation: eat well, feel well

I'm not going to say anything that we have not already heard about the foods that we put into our bodies, after all, "You are what you eat."

Nutrition plays a huge part in how our bodies respond and deal with pain and inflammation. We can eat to help to heal our bodies from the inside. Garlic, ginger, cumin, and turmeric to name just a few.

Homemade vs. processed foods

Homemade meals are far superior to processed foods however I am well aware of the amount of energy it takes to cook and sometimes it's just too much.

When I do cook, I tend to cook double the amount and freeze one half so that on a day when I don't feel well, we will already have a meal in the freezer. I also have realized that we don't need lots of ingredients either. Simple meals are good too.

We eat a lot of fruits and vegetables. Our vegetables are limited as Tim doesn't really like veggies. So we have a lot of stir fry vegetables like mangetout [snow peas], pak choi [bok choy], green beans and I also throw a handful of spinach into whatever we are cooking.

There are some amazing recipes out there for simple, healthy cooking and they taste good.

My advice when managing chronic pain

Remember you won't always feel like this and hopefully, you will have better days to come. So rest when you need to and ultimately listen to what your body is telling you. You know your body. You know how much you can push yourself.

I realize that dusting, cleaning, and hoovering are all exercises. And it doesn't matter that I am not running a marathon yet. Small steps up giant mountains. I personally feel that as long as I am moving, I am doing okay. And that is good enough for me.

Managing chronic pain

I don't have all the answers however I am learning to look after myself by treating myself kindly, filling myself with nutritious foods, and taking every day as it comes.

Want to hear more about managing chronic pain from the bladder cancer community? Search our forums.