My Coping List
I developed this list in 2011, I had reached a dead end, all treatments to date had failed. I realized there was nothing I could take and nothing I could do to stop my pain. I had to find a way of coping with my pain, my panic, my fear and flight response to pain; I had to have a strategy for getting through my horrific and frightening pain flares. This is how I came across the idea of a coping list and what I came up with.
Some people cope in extreme situations by maintaining some element of control e.g. when being tortured they determine not to allow themselves to cry out until they have counted to 30 seconds. This gives them a degree of control. This idea struck a chord with me and I decided to work out a plan in order to feel I had a degree of control during a pain flare. This would not stop the pain but it would establish a routine that I could put into place.
MY COPING LIST
I use the word 'switch'. It works like a trigger to turn off the panic. I discovered this when I realised I had learnt very quickly not to react when the local fire station siren sounded at odd times day or night; it was extremely loud and visitors would jump in fright but I had become conditioned to it, I would be aware of it but I did not react; I had done this without consciously trying. I drew a parallel and decided to use the word 'switch' to turn off the alarm bells when my severe pain started.
- 'Switch' and refer to this list (if I can find it!).
- Don't panic, take stock of the situation and remember I have survived it before.
- Don't despair when I have a flare up that goes on for days.
- Practice breathing out twice as long as in Alternate Nostril Breathing
- Distraction –gather my chosen distractions for the night or day -ipad, puzzles, dvd's. Focus my mind on something in between the shooting pain clusters to reduce stress. If the clusters turn to continual throbbing, do the breathing for 5 minutes and do harder puzzles that demand more of my concentration.
- Physically get up and move to another room, change locations for 5 minutes or longer.
- Forget the idea of sleeping and don't stress about it.
- Remember there are eventually better days & nights.
- Oh and it's OK to cry, it helps.
- Do some mindfulness breathing, especially if I start getting upset.
- Every good day is a gift, notice and take time out to appreciate the little things in life.
- Pace your activities - see The Spoon Theory
- Find something you can still physically do that you are passionate about, something that absorbs your mind and takes you to another place away from the world of pain.
- Set a goal/s for the future, something that is achievable and carries a low risk of stirring up your pain too much or something that is worth the price if it does make your pain worse; choose something you really want to do. This gives you something to look forward to, something to aim for.
- Learn to say No or when to postpone things, do not feel guilty about not being able to do everything. There will be friends and people who do understand and accept your limitations, do not dwell on those who cannot, you don't need them in your life.
- Be kind to yourself and don't create unrealistic expectations of yourself.
- Be creative in adapting to your life and your limitations but don't give up on life because it has changed.
- There may be days when it all seems utterly hopeless but the human spirit is amazingly resilient. Things can change for the better in the most unexpected ways and we can discover strengths we never knew we had. Keep an open inquiring mind and maintain hope.
- Meditating every day has been clinically proven to help reduce pain levels so what do I have to loose, even 5 minutes a day is better than not at all.
- Gratitude! What a strange idea to bring into a list about coping with pain. However this is what I have been doing. Most days I give thanks for the good things in my life or the good things in that day. This practice is outlined in a book I recently read called The Pain Book . This concept is a real eye opener and explains how incorporating gratitude into each day can help your mental state. I think this also relates to focusing on what you can still do, not what you have lost.