How am I?

Regular and long term readers will know that I have been suffering with unexplained pain for some time now. Even as I write that I wince slightly in the knowledge that unexplained pain is so much more...kooky...than the explained. And whilst being mildly kooky has always been part of my charm, in this instance it is the worse possible characteristic.

Having seen specialist after specialist, practitioner after practitioner, I am still left without a clear diagnosis but know that day to day I live with pain in the way that gardeners live with the blight of weeds in their flower beds. Some days it bothers me less; some days it's as if a gigantic thistle has emerged, its prickles threatening to puncture every good thing in my day. I have read and read and read about what 'it' might be, what can I can do to make it go away. I have taken baby steps of recovery over recent months where my attitude has been: I live with this pain, I won't let it ruin my life.

The medics have called it 'Atypical Facial Pain'...which means they don't know what it is or what causes it, but it manifests itself as pain in the nerves in the face. This is what it feels like: tooth ache crossed with numbness crossed with I-need-to-lay-my-head-down throbbing in my jaw.

This will be the second Christmas where I have had this in my life and accept that thought with stoicism; there are plenty of people who suffer worse. I can function, it's just not that pleasant sometimes.

I am seeing a Physio-therapist who believes that this pain is all muscular; that over a long time the muscles in my neck and shoulders have got themselves into such a mess that they are constantly in painful spasm. She thinks this was triggered by a fall I had when skiing, which happened just before the pain started in 2010. She thinks she can fix me but that much of the emphasis has to be on me; on how I live and stand and walk and behave in between appointments. It's all about posture and eradicating bad habits; no slouching!

But in addition there is this other layer of action that might fix this problem. Yoga stretches. Over months, if I do yoga stretches each day, eventually my muscles will learn to live again and be normal. Then the pain should ease away. Secondly, Meditation. Yep. The answer lies in calmness. There is such an irony in this; as regular readers will also know, I have taken steps to make my life much calmer. For my addled mind, it has worked a treat, I am now calm. But in my body, as the pain persists, the calmness has not seeped in and worked its wonders.

So I am left now with a challenge. For months I have had this idea of meditation in my mind and have, I admit, dispelled it as fancy. I get that it probably makes you feel relaxed, but I have yet to accept that it will actually cure my pain. I have read book after book about this and there is proven, clinical evidence of its success. But really...really?? I am a sceptic. I need however to embrace this doctrine and try it. Properly and in earnest. Otherwise I find my mind racing ahead with the thought that if I don't ever cure this pain, it will be my uninvited friend forever. It's already the elephant in the room on some family days, when everyone is having a great time but where my kids see that Mummy is 'having a bad day'. Boo says to me 'do you need a hug Mummy?' and I know her childlike empathy has come, and that there is nothing she can do but offer hug-comfort.

And so my new year's resolution becomes clear...and maybe one day I can report that the pain has gone and left me free from it forever...

Stand up straight...

I don't recall being one of those children who slouched. But for sure, I was always a tall and lean child and would often bend my body into uncomfortable-seeming positions to read a book up a tree or hang my head off the end of a bed for no apparent reason. The tallness that I self-consciously struggled with as a teenager did, over the years, become my friend. I'm about 5' 9". Gradually over those early motherhood years I suppose my posture deteriorated; due to having a baby perched on my hip for a few hours a day. But as an adult I can honestly say I was not that aware of my body posture until about a month ago.

I have been seeing an Osteopath recently from whom I learned that I have been adopting poor posture for many, many years, which combined with slouching at a computer or even worse at a laptop,  has contributed the pain I am experiencing. Hmmm. Isn't it a life lesson when we realise that much of the hardship we suffer is in fact self-inflicted?

So I am spending my time now relearning how to stand/sit/walk/run in an attempt to allow my damaged muscles to heal, then to strengthen in the hope this will cease the cycle of pain. At first this seemed like an interesting anthropological experiment but now the enormity of the task is dawning on me! Every waking moment spent with straight spine, shoulders back and taut abdominal muscles...it's exhausting! But at least it is something positive I can do to help the situation.

photograph by Jamie Beck

Meanwhile my husband has this theory that movement is the answer; exercise and getting the body working...it's uncanny, he finds the answer to every life issue in sport! Sport is the answer. For me this is an unnatural shift as for about 30 years I hardly did any sport other than at school. I am therefore embracing my time off to try to use my body; to utilise it. Each day something different. The best so far has been sea swimming and body boarding with the Boos. Really quite exhilarating and lots of smiles!  I think for them the novelty is having a Mummy who is having a go...instead of having a Mummy who stood on the sidelines. I am amazed it's taken me this long to work this out...but long may it last.

Beans to spill?

I am always a bit torn, when writing here, between being brutally honest or scrimping on the details for the sake of privacy. That fine line between drama and truth. You see, I am not entirely sure I know what to say about what has been going on with me lately. It's been a sort of slow movement, gradual and almost imperceptible over a some months; but now that I look at it, I can perceive the build up.

via brown dress with white dots from emerson made

From a blog perspective, I have this slightly uneasy relationship. Some people who read the blog are those who know me in the real world. Mainly they've known me for years and are my trusted friends, to whom I have divulged my blog secret (yes, I write a blog, yep I know it's unusual, yes I do share my thoughts with the world and no, I am not quite sure why, but yes I do love it). For this category of reader, I figure whatever I write here will just be a facet of what they already know. Then there are readers who know me, either because they have stumbled on my secret blog or because my husband, who is inordinately proud of what I 'create' here, tends to furtively show colleagues and acquaintances. This is quite touching but also leaves me with the impression that maybe his boss reads. 'Hi there', if you do, but forgive me if that makes me ever so slightly guarded about what I write. Then there are my blog friends; those who I may never have met but who shower me with empathy and kindness in comments and emails and without whom, frankly, this would be a lot less meaningful. And then there is the great unknown Internet out there, of readers who drop by, revel in all things Lou, and then carry on with their day, unknown to me.

This blog is a personal blueprint of me, which at times is so personal, but forever positioned as this open experiment where I write as if I am chatting over the telephone to one person, but actually the sound vibrations on that phone line can be picked up by thousands of others. This is why so many bloggers expend so much time discussing this point, and yes, when you think about it, it does feel really strange. I try not to think about it too much...

And so to the beans to spill...what's going on with me? An incremental set of circumstances, some medical and some psychological, and some where those two arenas collide. I have an unexplained, undiagnosed pain in my face; a year ago they thought it was tooth ache, but there is nothing wrong with my teeth. I have seen specialists (who were confounded by what it is), I have taken medication (with disastrous side effects and no results), I have googled every pain website there is. The fact remains: I have this pain, it's affecting my life and there appears to be no diagnosis and no treatment. My reaction to this fact veers from acceptance to abject panic at the prospect that I will have this forever. I do however acknowledge that compared to what some people go through medically, this is small fry.

So last week I tried to devise a plan; with some help from various sources to get this sorted. I rely on a discreet little group of friends who get random emails at odd hours saying things like 'you've known me for donkeys years, do I seem different to you?' I am trying to get to the bottom of whether the worry I feel about this pain is actually real.  Is the worry causing the pain? Is the pain causing the worry? So I am going to look at it close up and in the eyes and see if that helps. I have enlisted homeopaths and osteopaths and other people with 'path' in their title. So bear with me...

Meanwhile not blogging for a week was in some ways liberating, in some ways odd, in some ways strangely lonely (what? no comments!). I feel like I have an old friend whom I have not seen for a while and there is much to catch up on. The news and thoughts will filter through in coming days...

via brown dress with white dots