The code is something that I encourage all pain warriors to read. Let it empower you to keep fighting!
Source: The Pain Warrior Code
The code is something that I encourage all pain warriors to read. Let it empower you to keep fighting!
Source: The Pain Warrior Code
When people think of grief they often think of death, they don’t think about grieving over other significant losses. Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.
The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance. Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next. This is no longer thought to be true. It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.
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I have been convinced after years of refusing, to finally join Facebook. It has always been something that I have left to the kids, occasionally looking through their friends pics and being accused of stalking! But having found myself on social media whilst on the receiving end of a pain flare, I inadvertently joined several “chronic” groups through Duncan’s account. He rarely uses it, so imagine his surprise when he started getting very regular updates over the last couple of days every time a blogger was posted on Chronic Illness bloggers!
So I have linked my blog to a Facebook page – Pain Pals Blog – as well as my twitter feed, and would really appreciate it if you would follow the links and “like” the page for me. I have really enjoyed starting to be involved in the spoonie and chronic community and hope to grow my blog & page for and to support friends.
Thanks, everyone – all suggestions gratefully received.
Whilst we have been having fun and games here, the lovely girl has spent a couple of days with my brother & his family. Or to be more accurate her 5 year old cousin who absolutely adores her and my sister in law who enjoys having a girlie to talk makeup, hair and eyebrows.
None of my kids think of themselves as young carers, and one of them was horrified when a concerned teacher made a referral. I’m glad that they recognise that there are children out there who do have to take a lot more responsibility for caring for a sick or disabled parent/sibling. So often these youngsters slip under the radar. It is important that all our young carers are able to access the few specialist groups available to them (even if they don’t think they need them!!) – see action for children; young carer; babble.
So check out a few pics of the lovely girl enjoying time out from caring for mum to play with her cousin in the spring sunshine.
#chronic pain #chronic illness
Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can. Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on. So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem. Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said. Do you think he did? Eventually I received a text with one word……MORPHINE! What does that mean, Olly??
My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak. Allegedly the most acute pain and akin only to labour. When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it. Oliver expressed his concern by reading his book! The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder. A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!
My news is that I’m a week off the opiates. HURRAY! I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year. Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on? The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write. The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects. But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese. I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth. This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want to.
My GP was surprised when I told her my news this morning. She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going. It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet. But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter. Good riddance brain fog!
… 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 […]
We all have losses and sometimes more than we can handle. We are pushed, stepped on, put down and more. We hit bottom and do bad things or merely are not there. Well hopefully you helped yourself or took a helping handing. If you haven’t yet, start. Take baby steps. Sure, we missed a mind […]
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!!
Two nights ago we attended the KGS friends Entrepreneur careers evening and were privileged to hear the most amazing young man speak. He was part of a panel featuring the cofounder of Hotel Chocolat, half of the entertainment PR firm DawBell who represent the likes of Paul McCartney, Gary Barlow & James Corden, Sophie Cornish MBE cofounder of notonthehighstreet.com and Jez Cartwright, performance coach to top professional sports teams. But this panel of high flyers could not hope to compete.
Leaving school at 18, Alexander McLean decided to take a gap year before studying law at university. But no travels around the world for this young man, instead he wanted to work with a hospice in Uganda. During his time with the palliative care team, he was to come across patients who would change the direction of his own life. These were mainly young men who were dying, but the difference marking them out from other patients was that they were prisoners. As such they received little or no care, in much the same way as the homeless man found dying in a local market – no family or money equals no care or dignity. I’m not sure either of my boys or many others aged just 18 would be able to do what he did next. Purchased a wash bowl, soap, sheets and cared for the homeless man, advocating for him with the medics for 5 days until his death. He watched his naked body piled upon that of a dead woman and listened as told that they would be interred in a paupers grave. He then donned a suit, took a letter of introdution and visited the chief of prisons to ask to visit the hospital wing. The Ugandans were probably bemused by this well spoken, educated British boy.
He was horrifed by the hospital wing – dirty, broken windows, no furniture, no bedding and rarely any staff. Many of the prisoners had never even been to trial, never had legal representation and the most common reason for the 18 year olds being incarcerated was underage sex. Astonishing in the 21st century. Alexander returned to England, raised £5000, returned to Uganda and purchased sheets, blankets and paint. He then approached local hotels for mattresses and returned to the prison where he and friends refurbished the hospital wing. His time spent working with palliative care teams had shown him that everyone deserves care and dignity, a worth placed upon their being. This was applicable to the staff too – once the wing was a better place to work, the staff turned up and took pride in their work, whilst the death rate dropped dramatically. Remember this was achieved by a boy on his gap year!
Alexander went on to study law and was even awarded a prestigious training place as a barrister in Lincolns Inn. But he continued to visit Africa and saw the potential for change within a corrupt system. What did Nelson Mandela say? “It is said that no one truly knows a nation until one has been inside its jails. A nation should not be judged by how it treats its highest citizens, but its lowest ones” This was the birth of the African Prisons Project African Prisons Project which today runs across Africa, giving education and care from death row to prisoners on remand to the prison guards. Many are training in law and are able to help themselves and their fellow inmates, such as the murderer whose “victim” was found alive and well after 12 years but it took a further 6 years to release him. Or Susan, the battered wife who found herself on death row after she stood up to and killed her husband. With Alexander’s encouragment, she studied law by correspondence with the University of London, represented herself at appeal and had her sentence reduced from the death sentence to years in jail. She currently writes pleas for fellow prisoners and when a top African judge presented her with her qualification, she was told to apply to become a judge when she leaves prison.
Alexander speaks with such clarity, compassion and passion; yet his articulate, gentle manner is so self deprecating that he deflects any achievement away from himself. Tedx you tube video I spoke with him and on learning that I had been a palliative care nurse, he went on to tell me how much he values everything palliative care professionals do and thanked me. HE thanked ME!! Crazy and certainly not justified when I consider everything that this extraordinary young man has achieved to date – he really should be recognised and honoured. Queen’s birthday honours list maybe……
Alexander working alongside prisoners
I can so empathise with this post that I had to repost it here!
I have a core pain that has stuck around for the last 5 years. It feels like a bruise inside L/5-S/1. It is so deep. The cause of pain doesn’t show up on an x-ray, but the MRI shows several p…
Life With Chronic Illness
Nicola J Ogston
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