It has been a busy week. Exams, a school trip to Belgium, dinner out for Grandad’s birthday, SATS week at the primary school – and this is just the kids. The boys kept enthusing about how peaceful the house was last weekend without their sister, although when she returned from the battlefields trip she said that they both kept messaging her! The student engineer is half way through his end of year exams – this means only 5 more to go. He keeps telling us how hard done by he is as all his mates only have 2 or 3, and all of his are maths – well, yes son, you are studying engineering!
For me it has been a week of catching up with friends, one whom I hadn’t seen for several years. The other is a nursing friend – we started at the hospice on the same day and have since shared the same neurosurgeon for our backs and now the same physio for our different, but equally odd conditions! She for an ankle injury, me for my shoulders. I wonder if it says something about nurses of a certain age and the wear and tear on our bodies?!
I personally find catching up with old friends a mixed blessing when living with chronic problems. On the one hand it can serve as a stark reminder of just how much said issues have impacted on life in the intervening years. I remember a couple of years back when I went out with some ante natal friends for dinner – I think that I had undergone my first spinal fusion and had recently started using a walking stick (pink & sparkly!) – and one of the other “girls” kept saying to me that she couldn’t believe it and by the time we left the restaurant, she had become so upset by my condition that she was in tears. I comforted her and told her not to upset herself! My friend whom I hadn’t seen until last week has been through some horrendous health issues herself, yet she immediately said she could see that I have deteriorated. Yes my physical condition has worsened, yet I haven’t experienced a potentially fatal condition – but my friend contacted me the next day to say that I am an inspiration to her for the way in which I have coped. We have both undergone major life changes due to very different illnesses, both debilitating in their own ways. My friend, if you are reading you know who you are – and you are the one who is inspirational to me!
On the other hand, I was told three days on the trot this week that I am looking so much brighter and more like the old me. It seems odd when actually my mobility has been considerably worse this week and a dislocation of my right hip has left me with excruciating joint pain. But my nurse friend immediately asked if I felt different for stopping some of the drugs – she recognised that the difference was in my head! The clearing of the brain fog…….she suffered terribly when on pregabalin and knows only too well the inability to concentrate, the feelings of drowsiness and disconnection from the world. Whilst I am still taking 600mg pregabalin, I do feel that my memory is returning since stopping the opiates and combine this with some weight loss, hey presto….Duncan says he is getting his wife back. Hmmm, not sure if that is a compliment or not……
What else has happened this week? My change in profession – or now lack of – was brought home to me for International Nurses’ Day and Dying Matters awareness week. But Duncan has taken the next step in a new direction this week as his hand made, bespoke audio speakers have gone to be reviewed by a hifi magazine. He says it feels like sending his baby off – the thought of someone else disliking your creation before it has even really taken shape is scary. We managed an evening out for the National Theatre Live encore screening of Arthur Miller’s A View from the Bridge. It was absolutely fantastic – Mark Strong and Nicola Walker headed a great cast, and the set was brilliant in its simplicity – spoilt only by two things. The length, as I had failed to check in advance as any good disabled, pain ridden diva would do – only to find that there was no interval, and the fact that we were sharing the cinema with a group of 16 year old boys obviously studying Miller for GCSE. Not sure which was worse….finding myself stuck in a very long performance, or sharing said performance with 16 year old school boys!
Finally, Eurovision! That American got my vote – wait a minute, Justin Timberlake wasn’t a contestant. So the Ukraine win with a cheerful song about ethnic cleansing and I wait for the 17 year old to return from a Eurovision gathering. Enjoy your weekend!
It can’t have escaped your notice that it is the anniversary of William Shakespeare’s death, 400 years to be precise. So in a small act of homage to the good bard prepare for a smattering of literature!
“What greater punishment is there
than life when you’ve lost everything
that made it worth living?”
Romeo & Juliet
Some days it feels like this doesn’t it? What is the point in getting out of bed when your once ordinary life is now disappearing? Of course angst ridden teenagers always have the monopoly upon the unfairness of life, just remember Harry Enfield’s “It’s not fair!” Kevin, and particularly on getting out of bed. The student engineer and lovely girl certainly fall into the latter group! If the uni exams next week have questions about sleep and bed, he will be on his way to a first with no problem. This might be the time to share that he is actually “revising” really hard on the beach in Barcelona right now – some student life!!
Chronic conditions aren’t going anywhere. They have a nasty knack of rearing up just in time for that long awaited trip, but rarely taking a holiday when their wearer most needs some respite. Sometimes pain, physical or mental, does feel like a punishment – to me anyway! I don’t believe that there are many of us who are so selfless that we have never had that really bad day when we bemoan “why me?”. But I suppose the greater question is “well why not me?” because in Kevin’s words life is not fair. So on the good days I must focus on the things that do still make life worth living, so that on the bad days I can catch a glimmer that all is not lost.
“Virtue? A fig! ‘Tis in ourselves that we are thus or thus. Our bodies are our gardens, to the which our wills are gardeners. So that if we will plant nettles or sow lettuce, set hyssop and weed up thyme, supply it with one gender of herbs or distract it with many—either to have it sterile with idleness, or manured with industry—why, the power and corrigible authority of this lies in our wills.”
Othello Act 1, Scene 3
Was Iago right? Am I really in charge? A Twitter quote today said something similar
I quite like the idea of my will power being the gardener and that this gardener can nurture new growth through good and bad weather. This means that I can choose how I care for myself, that the seeds that I choose to sow and cultivate will shape me.
As someone with several chronic conditions I have lost things that made life worth living. Independence, mobility, waking up without pain, spontaneity, feeling carefree. But we all lose precious things throughout our lives, whether suffering an illness or not, as life constantly evolves and changes. As the gardener, I must learn to appreciate the new blooms as they appear in my garden; to take one day at a time whether thunderclouds gather or the sun shines; to tend and care for this sometimes failing garden in order to appreciate the “rich and productive” things that do still make life worth living. Coffee with friends, a child’s excitement, a partner’s touch, a faithful pet, favourite meal, or the days when the sun shines.
So as we celebrate the Bard, remember fellow spoonies that rather than viewing life as a punishment because of what we have lost, look to the future with Shakespeare for “What we are is up to us”.
… or at least I hope it will. Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter. Today, continues in this […]
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.
But she doesn’t like what the selfie culture is bringing out in her friends. The obsession with posing in crop tops and layers of makeup. So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends. She doesn’t find this easy and 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.
Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image. There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter. Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves. How times have changed! The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.
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??
Chronic pain and back surgeries have robbed me of my independence. This is probably my most prized possession that I have unwillingly lost. It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning. The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body. A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total. I have never struggled with my weight, even after babies, but this has been so tough. Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did. I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease. I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems. But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing. I miss my able body. The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one! I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process. I miss my able body.
Yet I know I’m still one of the lucky ones. There is always someone worse off than you, isn’t there? So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes…..by measuring them with a piece of A4 paper!! Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!