I have thought for some time that information is overrated. You often hear that information has been passed on; ‘I told you about that’, ‘we posted leaflets about that’, ‘we gave you a flyer about it’ and so on. Yet information is irrelevant unless it comes with understanding. It is understanding that transforms information into knowledge.
I’m on week 2 of the pain management course. I can’t say that I’m enjoying it, but I am finding it satisfying. It doesn’t feel like I am receiving a great deal of new information, but I am finding that I am filling gaps in my knowledge. Most importantly however, I feel the immersion in the information I am being given is ensuring that understanding follows, and that there is enough space in terms of time and emotion to use that knowledge to break patterns of behaviour.
I recognise that I have been given some of this information before and found it interesting. i also recognise that beyond finding it interesting I haven’t done anything with it. The course is not about cramming us full of interesting facts. It’s about making sure that we use that to change how we react and how we prepare. It is in rewriting my habits that I feel the course will be most beneficial. The information handouts are just an added bonus.
I’m on the pain management programme this month. I am hoping this will give me tools and techniques to cope better with the pain that I still have.
I had a flare up a few weeks ago, which ended with me sobbing in a Bed and Breakfast, because I couldn’t dance at a wedding I was at. Every time I have a flare up it feels so demoralising. When it ruins an event I have been planning and looking forward to it feels cruel.
I have completed 2 full days of the pain management course. We’ve talked about the difference between acute pain and chronic pain, why chronic pain occurs, the difference between hurt and harm, talked about the impact and psychology of pain, the pacing of life to cope better with good and bad days.
Objectively, a lot of the information is fascinating.
Subjectively, I’m hoping it’ll help me build my resilience to the pain; emotionally and physically.
I have been thinking about my body for a while.
Physically, my body has made it pretty hard for me to forget it over the past few years. It’s that feeling when you have tonsillitis and you realise how often you swallow and you wish you could go back to not noticing.
I also saw quite a lovely photo blog recently from a mum who photographed herself with her slightly bulging tummy and stretch marks and said she refuses to feel negatively about them as all the while she was trying for a baby she would have given anything to have said indicators of motherhood.
A third point: I was with a friend recently and we were talking about how our bodies have changed and she said something along the lines of wishing she could tell her younger self to feel more confident in her appearance as she would now give much to look like that again.
And there’s the crux of it. It doesn’t really matter what you look like, the confidence to forget about yourself is a luxury. There’s a multi-million pound beauty industry that works daily to ensure we don’t forget ourselves. There’s make-up and diet fads to sell to us after all.
Pain does not allow me to forget my body. Even on a good day I don’t have the confidence to break into a run for the bus. To jump up and down in the playground with my children. Sometimes the fear of the pain is as inhibiting as the pain itself.
Compared to the pain I was in a year ago, I am doing really well.
Compared to the pain I was in 6 months ago, I am doing really well.
I have had no bedbound days since my operation at the end of September. I have halved my medication from this time last year. I have started doing things with my 22 month old that require me to lift her into the car, take her places, push her in the swing and stop her running into the path of an oncoming vehicle.
I am doing really well.
Sometimes my leg goes numb and I have pins and needles in random places, like the middle of my calf.
Sometimes I can feel my back on the verge of giving way and I need to stop what I’m doing and give myself a break.
Sometimes I want to lie down immediately and feel like I might weep if I don’t get the chance to soon.
Sometimes I am really grumpy with it all.
And sometimes, I feel like a complete arse for feeling grumpy with it all. I remind myself that I have halved my medication and had no bedbound days, I remind myself that many people would give anything to be as mobile as I am. I remind myself that I was really lucky to get the surgery I needed and that it has made such a big difference.
I need to keep the perspective, and remember how well I am doing.
I also need to let myself feel a bit crap sometimes too. Sometimes I forget that that is OK too.
I am OK.
Friends, family and colleagues ask me how I am. They ask me how my back is. At the moment my answer is “OK”.
This always feels a little bit like I am fobbing them off, or not wanting to talk, or a bit flippant in the face of a genuine question. But here’s the thing. It is not flippant, or fobbing off, or hiding behind a vague answer.
I do not feel amazing. I do not feel ready to jump and run and lift my 4yo onto a zip slide. I am still in pain, often.
I do not feel crap. I am not bedbound. I am not wincing or crying when I move. I can walk for an hour or two at a time instead of 2 minutes. I have halved my medication. I can put my children to bed by myself if I need to, and we don’t need people staying to help out anymore.
Sometimes “OK” is exactly how I feel.
It’s been a while. Turns out it’s quite easy to let a blog lapse once you get out of the routine. But here I am again, with my fingers on the keyboard and things to say.
I am doing well. The surgeon who operated on me has discharged me and I don’t need to see him again. I have been assessed by a doctor, a physio and a psychologist to check that I am right for the pain management clinic, which will take place in June.
When I saw the surgeon and then the doctor, the meetings were brief. They both smiled at me and told me I was doing really well and that was pretty much it. In part this can be very reassuring. However, it has struck me how infrequently you get to see anyone who is a specialist in your area of pain, and therefore, how infrequently you get to ask anyone who knows stuff any questions.
I have taken to writing down questions I would like to have answered, so that when I have an appointment with a doctor I don’t leave and then kick myself afterwards (not a good feeling).
When I have asked questions, both the surgeon and the doctor took their time to answer, answered thoroughly and made sure I understood the answer. This led me to thinking – how can I ask what I don’t know about?
The speed of being discharged can be very unsettling. I have stood in the waiting rooms, realised my appointment is over and walked away feeling distinctly unsettled and unsatisfied.
A friend of mine has recently gone through a pain management programme. She passed on lots of great advice, and one of the things she told me was that your brain can be tricked. Very simply put, you try and focus on all of your senses when doing something simple, instead of only focussing on the pain. In this way you can distract yourself for a little while.
I try this sometimes when I am out walking and I am beginning to hurt. Sometimes it works and the pain subsides and I can keep walking for quite a lot longer. Sometimes it doesn’t work. either way it makes my walks a lot more pleasant.
Here are some of the things I have noticed:
When you stand quietly in the middle of a wood at this time of year, it sounds like it’s raining even when it isn’t. The leaves falling off the trees make a gentle sound when they hit other branches on the way down.
Squirrels are really noisy, and they sound like birds.
There are some beautiful places very near to my house. Today there were moments when I felt like I was inside my childhood imagination when I was reading Narnia, or Tom’s Midnight Garden.
Although my favourite season is summer, the colours in autumn take my breath away.
Sometimes it feels wonderful to be rained on.
Walking past the metal fence of the golf club in the sunshine feels like walking past a strobe light.
Walking past the biscuit factory makes my nose smile.