Last week, I attended a Pain Management Refresher Day up at Northern General Hospital in Sheffield. I last attended a nine week course of the same name three years ago and sat sobbing through the first two sessions, as I was in the very early stages of losing my career, my freedom, independence, sense of self - you name it, I'd lost it. Back then, the very fact I could no longer teach (I still thought I'd be able to do something but that blow was yet to come) was enough to floor me. I was a teacher. My work defined me (Superman's words but my sentiment exactly)
So, I attended the course, feeling beyond reach of any further support where pain management is concerned. I was sure I had my routine sussed, my limitations dealt with. How wrong I was.
Meeting the group, I was re-united with my fabulous OT (Occupational Therapist) Jill and a therapist called Miranda who's big on the alternative therapies.
It was good to review knowledge of pain and the awareness that pain is not a mechanical problem to be fixed, but rather a system which works through a process managed by responses and chemicals.
For those of us with a chronic pain problem, as we have repeated pain messages from a point of pain, up the spinal column to the brain and back again, the process becomes more sensitised and you become locked in a vicious cycle, rarely, if ever, free from pain.
As pain is exhausting, chronic pain and chronic fatigue go hand in hand and ensuring those around us are aware of that is ever important . I really struggle with this one, as do many in the group that day.
We shared our own experiences. The first was from a girl with chronic pain and a very real fear of falling after a falling accident that is keeping her housebound. Her recovery is hindered by a growing agrophobia, eating issues and increasing anxiety.
Then a stoic woman in her 60s, who had lived with chronic pain since an accident at eighteen years old, told us that retirement has given her a release from the frustration and embarrassment she has felt all her life at not being able to work and this release had enabled her to relax and stop the panic attacks and a constant fear of reprisal from neighbours. We all nodded as we recognised ourselves there.
A woman in her early thirties sat two seats away from me. Her experiences mirrored mine exactly and I found myself staring in the mirror at myself five years before. She had recently had to stop working as chronic fatigue finally overwhelmed her. Over twenty years of fighting illness had taken their toll and she looked tearful, exhausted and beaten.
As I listened to her, I identified completely with her story. She is in the very early stages of this new life and I felt such sadness for her.
As Miranda and Jill talked to us about developing Mindfulness, I slipped back a few years, remembering my past and who I had once been - a young woman with a busy social life, all spare moments spent with my husband and dear friends at the theatre, music events, London bars, the cinema, walking and travelling every weekend. I had a hectic career as a teacher, the best job in the world for me, making a difference step by step for the children in my care and the staff I supported in an East London school.
Being taken through the following steps, we were asked to acknowledge how we respond to the past, present and future plans. Here goes.
We must try to let go of what was.
Here and Now
Each day, try to make optimistic choices based on your past and current experiences
We must make realistic plans and look forward.
THIS WAS MY LIGHTBULB MOMENT...
I didn't make plans for the future. I noticed how resigned I had become to my fate. I even call it that. My Fate. Like it's all over and the fat lady didn't even serenade me.
Where has my lust for life gone? My positivity? Must work harder on this! I think for all people with chronic pain, the past and the present are enough to be dealing with on a day to day basis.
But without a glimmer of hope for the future, all left is darkness. We need light, hope, excitement and dreams.
Without them we have nothing.
I know where I need to be aiming right now and I promise to do so. For all people suffering with chronic pain problems the following points must be part of our focus each day:
Exercise - Do Something: swimming, walking, bending or stretching. You know your limits.
Work* - Do Something: for those who work, create aims and develop your strengths. If 'working' from home is an option, find your strengths and work to them, whether you can write, bake, educate yourself or personally extend yourself in some way.
*broadly speaking: not necessarily paid - many are incapacitated and can't earn a living.
Family - Do Something: aim to make contact each day if you are alone, or spend quality time with those at home with you each day, talking, watching TV together, playing cards, just go for it.
Future Plans - Do Something: Make plans. It may be to invite a friend round in a week or two, or plan a trip out to the park. It may be for a friend to collect you and go to a cafe for coffee. It does not have to be huge.
I remember a huge step for me last year was going for coffee at a cafe up the road. Preparing myself, looking presentable, being in public, walking in to the cafe from the car and managing conversation for over an hour! I was anxious before and exhausted afterwards. But I did it. The pay off was a slower day the next day, but it was well worth it. Knowing I could manage that meant I would be able to do it again.
Not every week, but often. Opening that door was a significant move.
Positivity is key. Yes, it's exhausting, but everything is - do something each day that will move you forward. Physically, Mentally and Spiritually.
And there lies my lesson. Live your life. Existence is never enough.