Learning to Love and Laugh at Pain

I love it when I can find a reason to laugh at pain. These days I genuinely appreciate my pain for what it gives me, I know that sounds strange but it really is true. I have been in pain for around 20 years now, I feel it pretty much everywhere, and so I have had to develop cunning strategies to get one over it at every opportunity - I have had a lot of practice!

I was on the verge of a heart attack in my early 20s when the genetic disease I have was first discovered. Experiences like that have a tendency of leaving a person with a glass half full mentality, and an acute awareness of how precious life is. The way I see it is that I am on 20 years of borrowed time right now. This makes me feel incredibly lucky, even if other people don't see it that way because I am a wheelchair user.

People often talk about fighting to overcome their conditions, but over time I have learned something important about pain: when you experience chronic pain, and you know you will forever, you really do have to learn to live WITH it, not against it. Not least because steeling yourself against it, for most people, will only make it worse. Pain can get us down, it has so many different faces and places, so many different moods and there are so many ways to deal with it. Today, I want to share my three favourite strategies with you.

These do not necessarily change my physical pain, but they help to change my frame of mind and how I regard pain, and in turn how I feel overall as a person. Just approaching the pain slightly differently can often mean I suddenly feel a lot better and able to cope. It may also be the case that feeling less stressed about being in pain reduces physical tension and in turn reduces pain for a lot of people too. So breathe deeply, relax your body and consider these three questions:

1. How did I get here?

If I wake up in more severe pain than usual, I find that it helps me to remember what caused the pain to be worse today; I was nearly always doing something worthwhile, or awesome. For me, that could be anything: attending a protest or playing a gig, spending a day out with the kids, or visiting a friend, getting domestic stuff done with and for my lovely family, or just having a bath and being nice and clean.

Sometimes, I have had such fun thinking about all the great things that I've been able to achieve despite the pain that I'm able to smile, or to laugh; all of a sudden it all seems worth it, every last scrap. If this is what it costs in order for me to live my excellent life, then I pay it gladly.

2. What is my body telling me?

The best advice I was ever given about pain management was by a physiotherapist. This is easy to say but hard to do: "listen to your body" - it really can tell us so much. It's so helpful to learn from what your body is telling you and use to this knowledge in your planning for the future. You may even be able to avoid increased pain next time. Ask yourself:

-Is this a little nudge towards encouraging better pacing, or pain management?

-Do I need to keep a day free before, or after, an activity to make it more accessible next time?

-Is there anything I could have done differently to reduce the consequences on my body?

-Is it time to get some advice from my GP? Or to ask for a review of my pain medication (I've just had one and now have more night time medication in place, yay!)?

3. How lucky am I?

These days, when I wake up each morning the very first thing that I am aware of is that I hurt. I have, however, learned to make sure that my next thought is always 'I am still here and I get another day with my family'. That is worth any amount of pain and it fills my heart with joy.

It is hard not to feel down when you wake on those really bad mornings when you immediately know that nothing except pain is going to happen today, especially if you have to cancel plans. A day lost to pain is not a day wasted, though. It is an essential part of our survival as people with health conditions to take a rest, and acts as a reminder that life is acutely vibrant. While resting with my pain I find thinking about all the ways in which I am lucky, and this helps to bring a smile to my face.

I hope that some of you find some use in these tips, and don't forget if you have any of your own to share, then please do with the rest of us on the Cloudy blog by emailing cloudy@manchester.ac.uk.

May the joy of each new day flood you with pride and power!

Written by Cloudy participant, Dennis Queen.