Pain, Pleasure, Procrastination… And then there’s Paris

In the last 2 weeks, there has been pain (a lot – both emotional and physical), pleasure (a lot – mostly emotional and quelle surprise not much physical) and procrastination (a lot:  had a difficult essay to write for a course, not to mention a bad dose of blog-block to boot.) Taking my own advice in line with what I wrote a few posts ago, instead of running from it or trying to ignore it, I just allowed myself to experience the pain, allowing myself to “just be” with the powerful emotions and physical sensations. I didn’t judge them. I tried to do the cuddly stuff you are supposed to do, like be kind and compassionate to myself – a bloody hard job with my inner critical Cruella de Ville always lurking in the shadows. Buddhism teaches that pleasure too shouldn’t be judged or dwelt upon too much. Like pain, pleasure is impermanent and will  disappear or morph into something else (pain again?) So I enjoyed it but remained detached from its Siren call, and the risks of shipwreck on the rocks of disappointment. I hope you will also indulge my self-congratulation at the skill with which I was able to quietly observe and just allow myself to be with my procrastination…. It worked like a charm – I avoided writing that terrifying essay or thinking about my next blog for days.

In the end it was sheer time pressure that ripped me from my literary paralysis. Time had run out before we went off to Paris this morning and the pressure of not getting there – with all the associated hoo-hah of packing two oxygen concentrators (one for walking and one for sleeping), materials for changing wound dressings, stacks of medications … oh, and let’s not forget the clothes!

With chronic illness, it’s just a fact of life that there are plenty of natural opportunities for riding life’s emotional roller coaster and, in spite of all the tricks, tools and CBT techniques in the world, it’s the devil’s own job not to end up in the front carriage every time. On the one hand, I was excited about how much more I could do at the gym and could really feel my muscles again thanks to a new, smaller oxygen concentrator which delivers my magical elixir to me while I move around. I am constantly amazed at how kind people can be, especially the NHS physios who work with me (see clip). The sun shone. I had been to the park with friends and also to the theatre four times to see shows and operas. The rose in my garden was smelling like heaven and my wonderful cats and husband (or my marital life partner as I call Christopher much to his annoyance) are all the joy and love anyone could wish for (mostly)… What could go wrong? How could this high ever fade when these joys are around me constantly?

Well, two days later, when I say I really felt my muscles again, I mean I REALLY FELT MY MUSCLES! Never had my quads ached like this before. I had simply overdone it on squats – and they never were my favourite anyway! Added to this (and worse) was the recurrence of the long-standing pain caused by the open wound I have over my coccyx. This is a hangover from the huge operation I had last October and the pain has returned with more ferocity and fury than ever. The wound had almost healed and the pain much subsided, so its sudden return to its old ways plunged me into depths of fear and a sense of betrayal that I can’t even describe. Added to all this I still feel very raw about the state my lungs have got to and what this means for the future.

Yet I got up and still went to my course workshop for most of the weekend. The pain abated (with the help of very strong pain killers) and I carried on going to the gym and did my voluntary work. I stuck with it. At least I now had a great excuse for not doing anything else as I was back to just getting through each day. Blessing in disguise, eh? And once more, along came the trusted Phoenix and once more deposited me back on some kind of level ground. I regained some equilibrium. Still I hate the oxygen concentrator and the plastic tubing and how it makes my cheeks look really chubby. Mostly, when I have found myself at a very low physical or emotional ebb, somewhere in the gloom of depression and upset, I remember all the things I am looking forward to and how very lucky I am and how precious life is to me now. I have had to slow down bodily so much to see life’s beauty – but I do see it and sometimes – just sometimes – when my mind slows down enough, I appreciate it too.

Today is my 47th birthday and I find it hard to believe I made it here, especially given the last few years. People ask me how I carry on – I don’t know. Perhaps it’s all magic and miracles after all. I do know that whilst accepting and allowing, I do also try and remember the things I do love in my life and how lucky I am. Everything is always changing – “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man”. Who knows, I may just catch myself off guard and write that darned essay.

Next week!

“However bad life may seem, there is always something you can do and succeed at. While there’s life, there is hope.” Stephen Hawking