Author Archives: A night in with Nelly

About A night in with Nelly

I work with people who have a dementia. I am mother to Jesse, currently in Vienna and Rebecca who lives here. I have five grandchildren. I am an avid writer and have had a number of journalistic articles and two bookettes published. I believe in breathing, smiling and swimming in the ocean. :)

Medication time.

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As many of you know by now, it`s not a secret, the young chap I wrote about in a previous blog is my grandson.

https://anightinwithnelly.wordpress.com/2018/09/02/mental-health-services-in-birmingham-are-woefully-lacking/

Since that time, he has returned to live at home.

From when he was first sectioned nearly four months ago, he has had a whole conglomerate of anti-psychotic drugs and mood enhancers, none of which have really improved his mood very much at all although he does have some better days from time to time. Drugs he has been prescribed and occasionally made to take without his consent include Risperidone, Depakote, Haloperidol which incidentally, he was given too high a dose of and this resulted in him being “wired” and unable to properly relax or sleep for about five days, Procyclidine, Lorazepam, Olanzapine, Propranolol, the list goes on. In spite of his family suggesting he is lucid and wishes to engage in talking therapies, so far our suggestions have not been accepted as a good way to go by the team “supporting” his recovery. They say that he is unable to attend talking therapies while he is being medicated.

Catch 22.

Our dear boy struggles a great deal with his condition. The anti-pyschotic medication sedates him to the point where he feels immobilised and despairing of ever getting better. He is fortunate though and tells us that some of the young people he met in hospital have no-one, no family loving them and helping them as they try to get through it. I can only imagine how lonely and isolating an experience this must be.

Last Wednesday, he was taken off the current anti-psychotic and also Lorazepam, which is a strong sedative, for a period of five days to “see how he would cope.” He has suffered withdrawal from Lorazepam, which is a highly addictive drug as well as whatever his brain is experiencing as it wakes up from the last round of anti-psychotics. He is managing with PRN medication (as and when needed) mostly Depakote which stops him from sleeping and Propranolol which is an anti-anxiety drug. He takes them in a fairly haphazard fashion and his greatest desire is not to take them at all. Unfortunately, he is still ill and becomes very anxious and `pacey` without them.

I fail to see how this treatment resembles anything like a recovery or as one of the women I supported some years ago recently said to me, “I got better IN SPITE OF mental health services, not because of.”  She is in her mid-sixties and has spent several years of her life in hospitals under a Section 3. It doesn’t bode well does it.  I hope one day we will be able to look back as a family on this time and laugh and say, “fuck me that was shit wasn`t it!”

The problem with mental health issues is that they don`t show and people can mask their symptoms sometimes for years living in a kind of hell and with no support or anyone to talk to. The effects and impact that mental health breakdown has on individuals and families is major and the episode my grandson experienced and is trying very hard to recover from, has fractured us as a family. We`ve cried, we`ve sometimes laughed at his idiosyncratic behaviours, we`ve disagreed with one another and argued, we have gradually concluded that heavy drugs do not really help, certainly not in his case. They contain the issue, they do not heal. We are hopeful that natural therapies, diet in particular; talking therapies, patience, innovative distraction ideas and plain old love, will get him through this.

If anyone reading my blog can make any suggestions as to a way forward, then do please feel free to comment. I`ll warmly respond to all comments.

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Mental Health services in Birmingham are woefully lacking.

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I`​d like to tell you about a young​ adult of 23. who I know.  Recently, he has been significantly troubled by a lack of clarity, balance and joy in his life. Over time he has become seriously off kilter, depressed and like many young people, disillusioned with life, the universe and everything. He tried to purge himself of his morose thoughts by commencing various diets such as gluten free, low carb`, low protein etc. or by not eating at all. He sometimes binged and then vomited. Over time he lost quite a lot weight and became very pale and withdrawn and further down the line, he was clearly very unwell.  Eventually he became delusional and paranoid, he started to hear voices, he believed he was being pursued by people who wanted to harm him, he thought everyone was talking about him.

A recent global study evidenced that 72% of people who experience psychotic episodes have a single experience. https://www.nationalelfservice.net/mental-health/psychosis/psychotic-experiences-how-common-are-they-and-how-can-we-predict-their-onset-course-and-consequences/

In the UK, it is generally recognised that about 50 percent of young people who have a psychotic episode will not have a further episode throughout the remainder of their lives. We do not understand why, or what triggers these events and there are many schools of thought as to why they happen relating to hormones, inherited likelihood, diet, stress, street drugs, head injury as a child and imbalances of chemicals which affect the way the brain behaves, amongst other factors.

One night this young person finally hit his crisis point and had to be taken to A and E. The event was inevitable really since he had managed to hide or “mask” his symptoms and cope alone possibly for several years. After much persuasion at A and E, his parents finally got agreement for their son to have a psychiatric assessment. By now he was utterly exhausted by the thoughts that constantly harangued him and even he had some insight that he was unwell. He was kept waiting 18 hours to be assessed by which time he had become so agitated that in the early hours of the morning he ran away from the hospital. The police became involved. He was found in the city centre by his father and the police helped him to a nearby secure unit where he would be properly assessed. He was placed under Section 2 of the Mental Health Act which meant he could be detained for up to 28 days for a full assessment. His parents were relieved to know that their son would be safe and that they would be able to get their first decent night`s sleep for some days. After just five days the section was lifted and the family received an excited call from their son saying that he was coming home.

The family went into shock. They could not see how an authentic assessment could possibly have taken place in such a short period of time. During visits, their child still seemed rambling and delusional, they were terribly worried. After much to-ing and fro-ing, they finally spoke to a consultant. He said, “I spent an hour with your son today, he was rational, articulate, he made plenty of eye contact, he was not agitated, I cannot in all conscience keep him sectioned.”

The family were concerned that returning home would be a further “trigger”. They spent two days in negotiation with mental health services while their son remained on the ward and finally it was agreed that he would go to a half-way house for a period of respite. Here he would allegedly be supported by a psychiatric team, keeping an eye on his med`s and his moods until he was able to leave and live independently.

The half way house was pleasant enough but not in a great part of the city. His father negotiated with a mental health housing charity to move him to a shared house nearer to various relatives and in a much nicer area that he was familiar with. For a few days the arrangement went well however, the young man was not always compliant with his medication and the view of the house manager was that his mood was becoming flat and deflated. He had become quite rude which is unlike him and so it was decided that he would have an assessment by the Community Psychiatric Team. He waited all day for the assessment team to arrive and no-one turned up.

At 10.30pm the following night, he was woken up and taken from his bed to be sectioned again on a Section 2. His family could not see how on earth a social worker and two doctors can possibly have made an accurate assessment of him in, it appears, no time at all. He was driven to a unit in another county and arrived after 11pm where it was noted that he was “extremely angry.” This is hardly surprising; we would expect any person to be angry if treated in this way. It is shocking and disgraceful.

The following morning he was still angry, thumping walls and slamming doors. The response to this was to restrain him, in other words, pin him down while Lorazapam was administered via an injection, against his will. This is an unacceptable and archaic way to treat someone. It is 2018 and we would hope that in these more enlightened times, staff would be trained in creative ways of assisting people who are upset but apparently not. The ward manager told his family that staff “could not handle” his anger and so it was recommended he be moved yet again to a high security ward about thirty miles away.

Since being at the unit and in fact since the original section took place five weeks ago, at no time has he received any treatment other than being drugged with Olanzapine and other medications that have a tranquilising effect. He is not being treated he is being contained and his family are deeply concerned about this and very unhappy. It was their hope when he was clearly unwell, that he would receive proactive help and support. He hasn`t. Every-one has simply been reacting around him. Their increasing concern is that he will develop an addiction to the current medication and will then have to endure withdrawal symptoms when he is deemed well enough to reduce or cease the dosage.

In spite of this, he is now making small progress towards recovery and feeling better. He has had some anger issues on the secure unit and again we would suggest that this is entirely to be expected.

His family would like to understand if there is a medical reason why talking therapies and psychological support has not yet commenced? Does he meet the criteria to be kept on a section? He does not pose a threat of injury to himself and in twenty- three years he has never hit another person. He may well have made threats on the ward, but they are empty threats born of frustration at being constantly drugged and although I do not condone his bad behaviour, I can understand it. Does he have a mental health disorder? As far as I am aware, he has not yet been diagnosed.

The family is aware that their involvement is crucial to their son`s recovery. They would like him to be released so that he is free to come and go and spend quality time with them.

The family believes that many of the recommendations in the Mental Health Code of Practice have already been contravened. Four overarching principles are:

  1. Least restrictive option and maximising independence Where it is possible to treat a patient safely and lawfully without detaining them under the Act, the patient should not be detained. Wherever possible a patient’s independence should be encouraged and supported with a focus on promoting recovery wherever possible.
  2. Empowerment and involvement Patients should be fully involved in decisions about care, support and treatment. The views of families, carers and others, if appropriate, should be fully considered when taking decisions. Where decisions are taken which are contradictory to views expressed, professionals should explain the reasons for this.
  3. Respect and dignity Patients, their families and carers should be treated with respect and dignity and listened to by professionals.
  4. Purpose and effectiveness Decisions about care and treatment should be appropriate to the patient, with clear therapeutic aims, promote recovery and should be performed to current national guidelines and/or current, available best practice guidelines.

It is their intention as a family to put forward their complaints and concerns to the appropriate authority in the strongest way available to them.

Their son will attend his tribunal this week to appeal to have the section lifted. Should the panel make the decision that his section cannot be lifted at this time, then they will appeal again. They would like to ask how are our mental health services intending to help their son recover because after this experience, they are naturally finding it difficult to believe that they will.

One final point, I hate to sound ageist but I question how appropriate is it to appoint nurses who are barely out of school, to comment to tribunal panel and make life changing recommendations on such complex matters?

The old girls` reunion.

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When I was a girl, I attended King Edwards V1 Camp Hill School for girls. The school was once situated just a few minutes from Birmingham city centre but in 1958, it was relocated to a new build in Vicarage Road in Kings Heath. Yesterday the girls` school celebrated its 60th anniversary and I decided to go for old time`s sake. I wasn`t quite sure what to expect but when I arrived the place was already buzzing with about 200 old gals turning up to see what changes had taken place over the decades, many of them using zimmer frames, walking sticks and wheelchairs as their mode of transport.

In the assembly hall, the impressive sliding doors that used to open up every morning while we took our seats, had gone and been replaced by solid walls. Echoes of `Friday Songs` rang in my head and memories of the sixth form girls up on the balcony singing `Ring Out Ye Crystal Spheres` and all of us assembled singing `The Night Song` as a round from The Little Sweep, came flooding in to my mind. Our music teacher Miss Flowers would be on the stage in one of her enormous variety of home-made dresses, every one created from an identical pattern to show off her rather curvaceous figure, swinging her baton and stamping her kitten heeled foot on the parquet flooring.

We eventually sat down for a dinner which was served to us in the old dining hall by ladies who looked like Mrs. Overall, after which  I had a good old explore. The gym and changing rooms area hadn`t altered much. I recalled the gym teacher Miss Howard who some girls loved but I loathed, reading a letter I had written excusing me from hockey because of period pains.  I would tell any lie to get out of hockey.  She examined it and said,  “Are you sure your mother wrote this Helen?”  and I responded with all the haughtiness that I could muster, “Are you insinuating that my mother is a liar Miss Howard?”  Oh the cheek of me!

King Edwards was and remains, a terribly privileged place to be. In those days we had to sit the Eleven Plus exam and if your marks were high enough it secured your scholarship which is what happened in my case. My father who was a socialist was horrified, my mother, always a true blue, was over the moon. I think she was proud because King Edwards boasted at the time that their pupils represented the top two percent of the country`s intellects, the crème de la creme. However I struggled there for all kinds of reasons and at dinner I sat opposite a woman who had also struggled. Our parents had never been wealthy, the majority of King Edwards` pupils that I went to school with came from wealthy to extremely wealthy backgrounds. We shared how we had never really fitted in and how the uniform cost our parents an arm and a leg. I never went on school trips abroad, it would have been impossible for my mother and father to find the money.  I always felt on the outside and I could not wait to leave.

I was thought of as a bit of a rebel and I think this was because I often questioned the teachers and challenged their views, something that was not encouraged at King Edwards in those days of pupil subservience.  In spite of this, I made some good friends there, two of whom have been my lifelong friends so if I can take anything from school, that would be the most valuable thing for me. Many of the teachers did not like me, I still don`t really understand why. Perhaps some of them were jealous, I was pretty and popular with the boys who were schooled next door, I was vocal and I liked to entertain my schoolfriends by being amusing (no change there then.)  Perhaps I made them feel ancient.  I especially loathed Miss crump the art teacher who was a midget with cropped ginger hair. It was a mutual loathing.  She wore tweed jackets and skirts with woollen ankle socks and brogues and always smelt of old fags. She wrote notes on packets of Park Drive, she was vile and she always marked me down in art, even though I was very good at pencil sketching particularly. She described me as lazy which I am not and she said so frequently to the art class. I was so happy when I finally got a new and handsome art teacher, what was his name?  He had a beard and he was lovely and in my fourth year my Crump days were finally over!

For any of my old pals reading this, you may recall Miss Lacy (geography) who had an enormous tumour in her stomach, she looked permanently nine months pregnant and initially would not have it removed as she was a Christian Scientist.  I am reliably informed in the end, Miss Lacy underwent the knife so that must have been quite an operation.

Miss Howard (sports) developed bone cancer and lost her battle for life. When I found out in my adulthood I regretted how horrible I had been to her as a kid. Especially at shower time after sports when I always refused to take my kit off in front of her and only ever washed my feet as Miss Howard was reputed to be a lesbian and as a result, many of us judgmental and extremely naïve young girls, kept a wide berth. Poor Miss Howard!  I would probably like her now.

Mr. Letch who used to sit on the desk and write on the board with his feet because he had no hands, moved to become Lord Mayor down on the south coast somewhere.

Miss Miller, the terribly upper class and scarily intimidating head mistress who spoke with a plum in her mouth, retired and was replaced by Miss Manderville who was the exact opposite apparently and was incredibly loved from all the accounts I heard yesterday. There were also many tales of raising money for the swimming pool. The penny races up the school drive and other fund-raising activities went on for years. I left the year it was being built and went there to swim a few times after I had left school, but it was a disappointing pool, very small after all that effort.

I left the reunion during the after-dinner speeches. I was getting to the point where I remembered all the reasons why I was so unhappy at grammar school and why I left the moment I was legally allowed to. I looked around the assembly hall at the audience gathered there yesterday. The entire audience was white and I would hazard most of the women there were quite well off judging from the designer dresses and handbags evident all over the shop.  I am happy to report that from walking around the corridors it is also very evident from photographs everywhere that the school now reflects the diversity of Birmingham`s BAME communities but I wonder how it supports those pupils who do not come from wealthy backgrounds and how it makes them feel included and valued.

Oh! The old stagnant pond is still there at the front of the school. As I drove away I recalled us being instructed to get a water snail for a biology lesson and I brought mine in and placed it in clean tap water where, during the course of the lesson the poor thing died. The teacher spoke to me as though I were the most imbecilic person she had ever met because I had not understood that this major change to the snail`s environment would finish it off.

So! Cheers King Edwards. My time there taught me to broaden my view of the world and eventually took my politics to the left. It made me realise that you can be as intelligent as Pythagoras however, this does not necessarily mean you have emotional intelligence. Most of all it has taught me how important inclusion is, it would be a sad, dull and deprived world without it.

So take that and shove it up your jacksy Donald.

Gardening is GOOD for you!

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When I got home from work on Friday a letter was waiting for me. I could see straight away it was an NHS letter, the blue franking on the front of the envelope, the letter I had been waiting for and dreading, the appointment for my yearly check-up, year two following treatment for breast cancer.

The chances of the return of the kind of cancer that I had are highest in the first three years, and then the risk drops down quite significantly. If I make it to five years then the chances of it returning are lower than that of all the other types of breast cancer.

So on Friday night, fear paid me a visit.

Fear is a horrible thing. In my case I panic and start to think about the ways in which I might become ill and die at any moment soon. Fear makes me feel sick, it makes me tearful, fear makes me angry and it makes me want to drink a lot and blot it all out. So on Friday night that is exactly what I did.

When I woke up on Saturday morning I thought, “This is no good, I can`t be ruled by fear and spend my time worrying about something that might never happen……” so I told fear to fuck off.  I decided to tackle my garden which as some of you know, resembles a miniature jungle at the moment. I worked hard from 1pm and did not stop until tea time.  An entire wheelie bin packed with weeds and brambles later and after a long period of neglect the front garden is once again looking pretty.

Front garden

I can see the individual plants, I am so pleased, they were being choked by brambles, the lawn was two feet high. By the end of the day, I was so stiff I was hobbling around like an old aged pensioner – oh hang on a minute, I am an old aged pensioner hah! But fear had left me, hurrah!

Today I am starting on the back garden, it is a mammoth undertaking as it is about sixty feet long. A few years ago, a well-meaning neighbour had most of it chipped for me. She hoped it would cut down on maintenance but unfortunately the weeds have grown through the poor quality liner and now the grass is about four feet high. Bind weed chokes many of the plants in the border, it is a huge task yet one which I shall embrace with joy and pleasure. I have my gardening mojo back and I have a plan.

As for fear, well when fear buggered off, fear left something behind.  Fear left hope, positivity and delight in the things that matter to me most like nature and nurture and love.

While we are on the subject of love; my friend Carol Hands who lives across the water in America, is ailing at the moment. Carol writes some of the most awe inspiring, intelligent and truly beautiful blogs here that I have ever read.  Her blog page is called “Voices from the margins.” I have shared many of them, Carol is a poet, an academic and a propagator of peace and balance in these difficult times. Carol if you read this, I know you are in pain. My love is bouncing over the ocean to find its way to you, accompanied by hope and positivity.

Happy Sunday.

I need a Pongo-meter!

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I recently attended a dementia café at a venue not far from where I live. My talk was to carers and was about the work of the charity who currently employ me as an advisor to people who have dementia.  My presentation was in full swing and we had been debating all of the different gadgets that can be purchased to make life a little easier for people with dementia such as speaking clocks, front door sensors which will remind you to pick up your keys, mobile phones with GPS trackers, for if you become lost outside and so on.

This particular venue is a lovely old building in a very swanky part of town, so all those attending were extremely well off. Some spoke in clipped accents similar to Hyacinth Bucket or sibilantly, like Joyce Grenfell and were all jolly, jolly nice women.  I mean that, they are really lovely women.

One of the ladies listening asked me (and you have to imagine an upper class English accent)  “Has anyone designed a Pongo-meter yet?”  and I said, “A pongo what?  I`m sorry?”

“A Pongo-meter,” she responded, “I will need one when I am older to measure the levels of ammonia in the air.”  She went on to explain that her greatest fear when she is old is that she will become incontinent and that her home will smell.  She is worried that she will be so immersed in her own pong, she will lose awareness of the fact that she needs to take a shower or change the sheets.  She suggested that when the levels were high enough, the Pongo-meter could be designed to speak and say something like, “ Mrs. So and So, you need to take a shower.”

I responded that I thought her idea an excellent one yet fraught with potential problems…….

For it all depends upon whether or not the individual with the dementia can remember A) what a shower is and B) where the shower is situated………

Back to the drawing board!

Take a look at this. The work of Anne Nicholls.

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My dear friend Annie, has a forthcoming exhibition at the Artrix, here is some information about her work……….

Invisible: A New Look at M.E.

This exhibition of art and poetry by Anne Nicholls runs from 4th April to 20th May at the Artrix, Bromsgrove, Worcs., B60 1GN. It illustrates some aspects of Myalgic Encephalopathy/Chronic Fatigue Syndrome as experienced by Anne and many of her fellow sufferers. This frequently misunderstood condition is painful and debilitating. Many sufferers are permanently bedridden and often have to spend their lives in a darkened room. Some can’t even tolerate noise to the point where they can’t take part in conversations. Around a quarter of a million sufferers in the UK have had their lives hijacked by ME. Others, like Anne, are only 40% disabled.

Accessing appropriate medical care is challenging. Luckily last year campaigners managed to persuade parliament to take it seriously. The NHS will hopefully stop telling sufferers it’s all in the mind and if they just got off their arses and bucked their ideas up they’d be fine.

Anne also has the support of the ME Association, The Salus Fatigue Foundation, Professor Paul Moss and Dr Rick Dunn of the University of Birmingham. Dr Sarah Myhill, who wrote the wonderful book “Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis” (2nd Edition) also offers her endorsement. Dr Myhill’s phrase Mitochondria not Hypochondria sums it up. As momentum gathers, the exhibition is receiving increasing encouragement.

For the employers, colleagues, families, friends and carers of those who are sick of scepticism on top of illness this is a great opportunity to understand what it’s like. And for sufferers, it’s a way of explaining how they feel.

Anne 1

After all, a picture paints a thousand words………   below is an example of Anne`s work.

Anne 2

 

Unfair sentencing for sex offences #metoo

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Very recently a young actor called Bruno Langley who is well known in the UK for his role as Todd Grimshaw in Coronation Street, was convicted in court of sexual assault. Bruno did not go to jail for his crimes, instead he received a twelve month Community Service Order, a £250 fine which will be paid to each of the two young women whose breasts and crotch he grabbed while off his face on alcohol, a twelve week “rehabilitation course”, a twelve week police curfew, a twelve week tag and he will be on the sex offenders` register for the next five years. He will almost certainly never work as an actor again; his promising career is ended. I commented at the time that I felt quite sorry for him. Several of my friends agreed with me and some did not, it`s the way of the world but I`d like to clarify, why I made that comment.

None of Bruno Langley`s behaviour is acceptable, he was clearly extremely drunk when these events unfurled and he has since admitted that he has a serious alcohol problem for which he is now receiving treatment. Bruno also explained to the court that he has some mental health issues as a result of unresolved conflict in his earlier life so I imagine he self- medicated with drink. This obviously doesn`t mitigate what he did but it in some way explains what happened and why the lines for him, became blurred.   It isn`t the sentencing per se that makes me feel sorry for him, the unacceptability of his behaviour is not in dispute. It`s the severity of the sentencing he received that troubles me, for an offence that I consider trivial in comparison to many other levels of sexual assault from which the greatest percentage of perpetrators walk away acquitted unless they are black, in which case they are far more likely to be sentenced to a prison term.

It seems to me that in the current climate of #metoo, Bruno Langley has been pilloried for his crimes, while men like Trump, Weinstein, Branston and countless hundreds of others are never going to wind up in court because of what they allegedly did. They are far too wealthy to have to undergo the experience of such humiliation, they can quietly settle the matter out of court should the likelihood ever rear its embarrassing head and from the safety of their palatial homes, they can most likely continue to behave in the way that the press reports they do. It`s all wrong, it`s a disgrace and it`s bloody unfair. So that is why I feel sorry for Bruno Langley.  It seems to me he has been scapegoated and because of the current climate the decision of the judge was a legal expedient.

Perhaps it is Mr.Langley`s​ karma, perhaps he will go on in his life and achieve something magnificent to attain for his crimes, I do hope so and I hope he will be given a second chance. His remorse in court was said by the judge to be absolutely genuine. As for the two young woman who took him all the way to court when in my opinion the issue could have been resolved far more helpfully for all parties out of court, I imagine in hindsight they wish they had never pursued the matter into the public domain and it is my opinion that they haven`t done women any favours. I bet I am right.

#metoo

Going round the sciatica bend……

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It`s no fun having sciatica. It really bloody hurts, it feels like two gnarled old men have cut a long incision into the back of your thigh, dug in their fingers to take hold of your ham strings and then both are proceeding to pull mightily, in opposite directions like a ham string tug of war. The resulting pain sends what feels like electric shocks shooting down my buttocks and onwards towards my knees making every step a mini torture. It`s vile and relentless. I can`t stand up straight and so I walk along in a stoop, like a really old lady which is slightly less painful. My GP sent me to a physiotherapist who gave me a whole set of exercises to do which are in practice, Iyengar yoga. I find that they do help but only after you are able to get over that initial pain barrier so that you can actually carry the exercises out!

Sciatica is so awful, some women describe it as being on a par, painwise, with childbirth and I would agree with that. So I have to take a shed load of painkillers to numb it. I have tried Co-codemol (puts me to sleep) Naproxen (didn`t have any effect) and Ibuprofen which works but only if I take enough to knock out the whole of Birmingham. My GP recently offered me Tramadol but this is what the web says about Tramadol….

Tramadol is used to treat moderate to severe pain. … Fatal side effects can occur if you use tramadol with alcohol, or with other drugs that cause drowsiness or slow your breathing. … Tramadol can interact with many other drugs and cause dangerous side effects or death.

Death is a bit of a bothersome side effect, so I think I`ll stick to a G & T in the evening thank you very much, it works really well for me. Yes it`s no fun having sciatica.

Meanwhile, when in the park retrieving my dog`s ball (that is the singular readers) which he hardly ever brings back to me, I have devised the sciatica knee bend, done with a straight back I can even rise up again afterwards. I sit down to peel vegetables, I enjoy piping hot baths and I spend my weekend break pottering which is lovely. So I`m very lucky really, it could be a lot worse.  Life is good.

I am an anarchist!

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As many of my readers know, I am employed with the Alzheimer`s Society as a Dementia Support kind of a person and as such, I get to visit lots of the various workshops we put on for our service users and their carers. One of the more popular ones is called “Singing for the Brain.” The local group near where I work in Solihull often entertains as many as fifty people and the facilitator arrives with his guitar and strums us through about an hour`s worth of songs from the mid nineteen hundreds upwards, through the century. We still sing It`s a Long Way to Tipperary” and “Roll Out the Barrel” occasionally interspersed with “Yellow Submarine, Rhinestone Cowboy and When I`m 64.”  Songs of their eras.  Everyone is linked together by bunting, which is passed around the circle as our strummer sings hello to each participant by their first name. It`s a really successful, sociable occasion and it helps people to feel they are still part of their community, even if they are quite far along the path of dementia.

I was pondering, how will the Singing for the Brain groups change and adapt as we move further into the 21st Century?

I find it hard to imagine a whole group of OAP`s singing “Smack my Bitch Up” or “Anarchy in the UK,” but it is a possibility. Personally I shall be singing, “Georgia On My Mind, California and whole mix of Sarah Bareilles, especially “Gravity,” which I love.

What will you be singing if you develop dementia?

Globally, dementia is one of the world`s biggest killers and we currently have 850,000 people diagnosed in the UK. It is so prevalent that many people think it is a natural part of ageing but it isn`t. It is a disease that kills the brain and it can be a devastating illness, which is why groups like Singing for the Brain are so important in making life more bearable for people with dementia, their families and carers. It is still possible to have a life when you are diagnosed with dementia.

On the 21st of September, it is World Dementia Day. You can help by ringing your local branch of Alzheimer`s Society which is present all over the globe, and becoming a Dementia Friend.

Together we can and we will, create a world without dementia. The number to ring if you are in the UK is:

0300 222 1122

It`s free.

 

 

We`re all doomed I tell you, doomed!

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I`ve had the past week off as annual leave. It`s just as well really because I have some further, unexpected tests and scans to get through relating to my breast cancer or breast banana as I like to refer to it.  Just when you thought etc. etc……

My book

I was due to visit a cousin in Ireland this week but another time cuz, too much on my mind at the mo`.

The holiday at home has afforded me some much-needed time to reflect on my mortality and possible demise, which may be earlier than I anticipated even a year ago although obviously I hope not.  When I was given the news that the banana may have migrated to my other breast, at first I sank into the Slough of Despond but eventually I find, my mind habituates to even bad news, the most morose of thoughts and emotions lessen and in doing so, they become more manageable and life goes on.

I have been reflecting on my life and whether I have any regrets. I have a few, but then again…..

I regret sending Fred Ryland a valentine`s card which read “Roses are red, violets are blue, cabbages stink and so do you.“  Mostly though, being of the nature that believes everything happens for a reason, I regret nothing and I remain an optimist.  I find the main problem with having an optimistic nature is that optimists really believe they can help people become better human beings and are genuinely surprised when we realise yet again and far too late in the day, we cannot.  Hey ho, I digress.

One of the things that living with banana has given me is a really chilled out attitude to the things that don`t really matter which I have discovered is almost everything. Take this morning for example, I have eaten a piece of toast and butter spread liberally with salad cream with a fried egg on top.   Accompanying this feast, I then chomped down an extremely large piece of gorgonzola cheese, two big chilli olives and a bowl of baked beans with at least a desert spoon of Lidl tomato ketchup stirred in.   To finish it all off I took my daily supply of paracetamol, mega doses of magnesium, vitamin D3, cod liver oil, devil`s claw and curcumin supplements.  I fluctuate wildly between eating healthily and not touching alcohol, to downing a bottle of wine and smoking five fags in each hand all at once.  Do I care how much I am abusing my digestive and bodily systems? Not a jot, I`m going to die anyway. Oh come on!  It`s the only thing we can be really sure of and as my sister Sue`s wife said to me the day my sister died, “I knew she was going to die, I just didn`t think it would be today.”  (“It`s a good day to die today,” Dustin Hoffman in Little Big Man.)

I don’t want a funeral. I`ve been to three recently and another one on Monday of next week. They have all been sad and that is absolutely fine of course but I don`t want sad, I want a happy affair.  The only funeral I have ever attended which was an affair involving lots of laughter and celebration was that of a dear friend and colleague Debbie Lees. Hers was a humanist funeral that really spoke of her, it was great.  So after I die, I`d like some kind death person to come and remove my body please and cremate me and may my family and friends have a big party, get drunk, take illegal substances if that is their bag and have a laugh remembering the me who I am.  And I don`t want any hymns sung, I`d rather you sang “Is that all there is?” and “Cabaret” and “You`ll never walk alone” and “The sun has got his hat on,” at the top of your voices and send my ashes off in the form of a firework. Hah!

So there you are, I don`t have anything to leave anybody, if there is one thing I learned from my Buddhist studies, it`s that material things do not matter.  I was about to write something mean and unpleasant here about clinging to wealth and belongings and about hypocrisy but my mother Bess suddenly materialised across the table from where I`m sitting and drumming her fingers on the wood, tut tutted at me and said, “Now, now Helen…..” so I won`t. She died 23 years ago and she is never far away. Thanks mum, you taught me there is a time and a place for everything and most of all you passed on to me your irreverent sense of humour which showed me how to laugh at life`s adversities.  I`ve enjoyed a lot of laughter in my life, you can`t beat it.

So, more tests over the next two weeks and the results at the end of the month, meanwhile, where did I put my baccy?

th