It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer. I can’t write about them yet – they aren’t just mine to tell. But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever. Chronic pain is flaring and spiralling. Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.
I am sorry to have missed Monday Magic yesterday. This poem that I found by Patricia Grantham seems appropriate!
I was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist. Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS. But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head. You know, when your head is too heavy for your neck. I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!
It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled with pressure in my fingers and found myself much slower at writing than my contemporaries. For all of us aches and pains are just normal everyday.
er a period of years she developed her own very distinctive style – the gallery described it as Marmite, as people either love her work or hate it – and her work started to be noticed by art critics. Today she has exhibited in a top London gallery, her art sells for thousands and she is a leading figure in the Royal Institute of watercolour painters. Just think, this all started with what was effectively art therapy!
But we mustn’t feel or be made to feel the lesser for failing to overcome our situations or to
My beautiful daughter stood up and gave a talk with this title at the end of last week. Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!). What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog. No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.
initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened. Hopefully it made them think for just a few minutes.
Today I think about the impact of hidden illness on body image and self esteem. The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted. On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list. Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure. Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often. To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!! But writing seriously, my own self worth has shifted significantly. I no longer feel like the person that I was supposed to be. Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??
So nice to see them actually getting on. In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress. We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo. It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike. That was one very long trek and never has Waterloo bridge felt so endless – it took 45 minutes to get me across the bridge alone! A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.
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