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FSH awareness – Oh I am so aware


Today is #WorldFSHDay …. I am one of the 2,000+ that has this condition. It dictates everything everyday and every night. There is no treatment, no management and no cure. Also there is little support, understanding or assistance from the people and organisations designed to do otherwise. It’s not photogenic, it’s not compassionate, it’s not escapable.

I pull no punches.  There is nothing remotely comfortable about the constant struggle to just exist.

Since it’s noticeable onset when I was 4 FSH has slowly robbed me of all my achievements, my purpose, my abilities and my pleasures. I can no longer work, drive, or play piano; be spontaneous, be independent, be principal in choices. Things I can do have a strict time limit otherwise there are consequences of energy and strength.  I can only go anywhere, do anything I want, if and when someone else is available.

What are you wearing today? Did you choose it? All my clothes are dictated by FSH, right the way down to my panties and bra. I never choose something because I like it.  Let’s move on to food, what made you decide on your lunch today? Something tasty? Did your decision depend on whether you can lift it to your mouth, or whether you can easily swallow it after chewing, mine did. 

Spend a moment considering this, try making a cuppa without bending your knees, hips, back, standing on tip toes, without reaching higher than your shoulders, using only your thumb and first finger to hold anything. That is the level of concentration and unsteadiness I live everyday, doing everything, anything.

A bad day is when it takes 3-4 attempts to get stood up from the three only places in the world I can (my bed, my toilet and my sofa spot), a struggle is when it takes 5-8 attempts, if it takes more than 8 don’t ask. My reward for the effort? To do it all over again and again and again, after all how many times a day do you stand from sitting?

It is a one way street, once a muscle set degenerates, there is no recovering it, it’s set to get worse. Tomorrow could be the day my muscles no longer support me, the next day could be the day I experience breathing difficulties, the day after that could be the day that……..you don’t want to know. Then again it could be next week, month, year, just one day.

Right now I am having to figure a solution about my desk. I cannot get up from the chair, but I do not know whether I can use a chair that rises. I have to find a local company that has such a chair that they can bring to my abode for me to try insitu. Then I have to decide whether it is worth the £3,500 ($4,500) expenditure, (plus service and maintenance costs).  Did you notice that paragraph said ‘I’? That’s because my needs cannot be met by the standard, limited catalogue of equipment available via my Occupational Health team.

Hey ho, must go, I need a pee and to make the journey productive I’ll put my mug and plate on the chair I use as a frame and hopefully get them as far as the kitchen.

Ain’t life fun!

 
7 Comments

Posted by on June 20, 2017 in General, Life

 

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The Play That Goes Wrong


The Comley Polytechnic Am Dram group ‘attempt’ to stage the acclaimed murder mystery, the leaders directorial debut (pronounced day-boo) “The Murder At Haversham Manor” set in the 1920’s. They are excited to bring this to the stage as  their limited cast and tight budgets have somewhat hampered their past productions of James And The Peach, Snow White and a few Tall Broad Fellows, and Cat.  However not everything goes to script!

The fun starts before the start, as the auditorium is filling the stage hands are asking if anyone has seen a dog, a springer spaniel with brown ears called Winston. On stage there is a door that won’t stay closed, every time someone closes, slams it, pushes and holds it closed, it slowly opens, of course at the start of the first act it sticks resolutely shut. The mantle shelf keeps falling down and an audience member is enlisted to hold it while a stagehand gets enthusiastic with sticky tape.

From beginning to end there are numerous mishaps of physical, verbal, set and props. But stoically the play must go on. The split second timing of stunts and interaction is incredible. The whole audience were in fits and waves of laughter throughout, I am sure we drowned out the Take That gig at the football stadium. The dexterity of positioning, the glamorous fiancé of the murdered Lord, the flamboyant over acting of the lord’s Brother in Law, the faithful butler who had the difficult words written on his hand or cuff which he mispronounced (morose, as mo-rose, cyanide as Ki-an-idd, philanthropist as Philand-rope etc). The slap stick antics of trying to move the corpse onto the stretcher, or when trying haul the unconscious fiancé through the window makes you wonder why they are not covered to bruises or marks because dumbies are not used in place. 

Valiantly battling on as the stage collapses around them, we reach the denouement, the Police Inspector did it.

This absolutely is the most hilarious entertainment I’ve ever seen. I’d go again, tonight, to see it and strongly recommend you do too. To this, or any other Mischief Comedy productions, Peter Pan Goes Wrong and The Bank Robbery That Goes Wrong.  But take hankies, or a hand towel, you will be crying with laughter!

 
4 Comments

Posted by on June 16, 2017 in Life, Review

 

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Death, Destruction & Drivel 


I make no apology for the next paragraph.

I have no interest, in fact I do not want to know anything about destructive perpetrators. I am not interested where they were born, to what parents, I am not interested in where they went to school or dropped out of university, I am not interested in the countries they visited or their family members. I am only interested in hearing one of two things, the perpetrator is dead or the perpetrators are arrested. End of. Nuff said. Anything more gives credence and advertising to groups who do not deserve my ear.

Now onto other things.

Hearing about the cowardly actions of an individual could not do anything but shock, hearing how young children and teens were fair game targets is disgusting, hearing the heroic endeavours of trained professionals, entrepid volunteers, and selfless strangers was endearing and touching. 

When there is an attack on a community, it takes that community to come together and fight back with kindness, whether a church/mosque/temple/tabernacle opens it doors for shelter, whether it is hard working taxi drivers who turn off the meter and drive people home safely, whether it is a homeless beggar who cradles a dying lady so she’s not alone, to reaffirm that there are strands of humanity around us in this busy, stressful, enclosing, faced paced times.

As for the media, stop trying so hard to be the first, find the worst, to criticise and condemn, you are swaying opinion, blackening good deeds, generalising those to be feared, and generally repeating the same thing over and over to fill the hours of broadcast.  Only on tv are crimes investigated, forensic tests done and results analysed and the bad guys questioned into a confession in around 45 minutes.

 
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Posted by on May 25, 2017 in In The News, Life

 

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Operation Cosy Cats


I’ve started a new project. Something to make purposeful use of my yarn stash of double-knit yarn.  Cats Protection are asking for knitted or crocheted blankets sizing 12×18 inches for the homeless kitties to use and take with them to their forever home.  That’s a size I can handle. So I have begun this elongated granny square using two strands of different coloured dk yarn (khaki and meadow) hopefully I will reach the required size before the 200g balls come to an end but if they do I can always edge in black.  My midnight brain is already creating other alternative patterns to try with my stash. There is a fabulous yarn shop near me and they often have sales of odd balls, I could make use of those without much financial outlay.  It’s giving me a lovely feeling of philanthropic warmth.

So my aim is to try and finish a blanket every two months and have four finished by Christmas. 

 
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Posted by on May 19, 2017 in General, Pets, Projects

 

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Listless Listeria 


Has it already been over a month? (Yeap) You sure it’s not been a couple of weeks? (Nope) Guess I should revisit my to do list then? (Yeap) ….. Hmm, this is not going to be pretty.

  • Work on the web site – phase one done, phase two being mulled over.
  • Carry on with crochet project – tedious brick wall hit, stuck.
  • Try and keep things tidier – that never lasted.
  • Research Greenwich trip – tickets bought, all ready.
  • Clear and tidy desk + draws – wellllll, should do better.
  • Chase up Neuro Consultants Letter – hmm, not even started.

Okay the web work was a big job (pages of alterations, additions and amendments), phase two is reworking the photo section. Another big job as the new photo albums need adding, each separate photo needs resizing, often © marking, as well as captioning.

Desk work has a new problem, I cannot get up from the seat. I’ve been tentatively googling disabled office chairs as I’d like one to raise me to the standing position, but they are pricey and I need to try insitu, see what other issues it throws up. Then I could spend a lot more productive and play time at my computer rather than the iPad.

I’m slightly side tracked by sourcing a mobile beautician who can come and scrub the be-heck out of my tootsies, make them happy. 

Must dash – the late evening sun shine is across my feet causing my eyes to close and mind to wander.

 
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Posted by on May 11, 2017 in General, Life, Projects, Website

 

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Running Wild

Last night Big Sis and I went to see this amazing play, an adaptation of Michael Morpergo’s 2009 novel about the Boxing Day Tsunami in Indonesia in 2004.  Lily Macready was riding Oona the 12-year old elephant along the beach, but she was behaving awkwardly, wanting to turn away from the flat calm waters, her flight or fight senses took hold and she took off deep into the rainforest as the devastating wave hit the shores taking the lives of many and destroying countless buildings.  The story details how Lily learns to understand Oona and how this majestic animal protects and guides her young charge. Stumbling into the dark dangerous world of greedy gun wielding animal hunters and bullying farmers burning the forest to plant plams to make the highly profitable palm oil (used in many products from soap and shampoo to cooking oils and convenience foods). Eventually stumbling into an animal sanctuary, sunburnt, shot, dehydrated and exhausted and being reunited with her Grandma.

I was not prepared for the play to be so dark and violent in places, something which noticeably upset the young children in the audience. The plot brought attention to the environmental plight of the region, the global zealous need for commodities and the cruel lengths the ruthless go to exploiting that market. 

Oona the elephant is mesmerising, her puppeteers seemingly effortlessly bring life to this charismatic character. The orangutans were lively, cheeky and the babies (being hunted to be sold as pets) were utterly mischievous. Even the tiny details as the fire flies were completely believable. There was a palpable gasp from the audience as the tiger was carried into the hunters camp, dead, valuable as a skin, a trophy, medicine, even though earlier we had seen the same tiger attempting to attack Lily and Oona. 

I would have liked Oona’s trumpet call to be a little louder, as compared to the volume and depth of the orangutans and forest noises it was almost overpowered. Also, we did not really get a sense of time Lily was missing, whether it was a couple of days or a couple of weeks.  But none the less it was a very engaging performance.

After coming home I took a look online to see if I could find out a bit more, and ended up confusing myself further. I thought the story was based on a true life event, although there was a story of a child being taken into the forest on the back of an elephant, Michael Morpergo’s book tells the tale of a boy called Billy, yet the play is a girl called Lily.  There was very little information about what Lily had experienced, or whether she stayed in Indonesia or returned to the UK, whether her father had died prior to the holiday and whether her Mother was killed in the Tsunami, key elements in the plot.

Never the less, I would recommend going to see the performance.

 
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Posted by on April 27, 2017 in Books, Life, people, Review

 

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Granny & Death & Terry & Me


It began by chance, a book sent in error from a club, a blurb that struck a chord, that became a twenty year trek through the wit, the word play, the entendres, the sideways swipe, the unobvious parody, the literal and the Literal musings of a man’s meanderings of a fantasy land. I have no idea why Sir Terry caught my imagination, whether there’s enough reality in the fantasy to hold a ring of truth or I was just entertained.

When two of his books, Wyrd Sisters and Soul Music were made into an animated series, I practically wore the VHS out watching them over and over, the colourful characters firmly in my mind I could see and hear them as I read and reread the books. The dulcet tones of Tony Robinson reading the audiobooks often accompanied sleepless nights.  Later when tomes like Hogwatch, Going Postal and The Colour of Magic were filmed, they were top of my birthday/Christmas lists, staying close to the story, capturing much of the books comedic quality without tipping over into absurdity. 

Every one of the forty-one works has had its own flavour, often parodying cliches of religion, science, mythology, folklore, business acumen, dynasties and continents or authors like Shakespeare, Tolkein, Dicken’s and Potter.  A few of his notable characters have burrowed and set up home in my psyche, Granny Weatherwax and Death being the primary.  I can loose hours perusing numerous quotes or mini scenes. Such as (in exaggerated witchy hag voice), “When shall we three meet again”, “I can do next Tuesday” replies Nanny Ogg in her West Country tone; or “On nights such as this, witches are abroad.  Well, not actually abroad. They don’t like the food and you can’t trust the water and the shamans always hog the deckchairs.” In this time of election decisions I’m reminded of Ankh-Morpork’s take on democracy, “Ankh-Morpork had dallied with many forms of government and had ended up with that form of democracy known as One Man, One Vote. The Patrician was the Man; he had the Vote.”

With the death of Sir Terry and the publication of The Shepherd’s Crown, the final novel, something had an end. I delayed reading the book as I wasn’t ready to say good bye to this comforting friend. Last week I took up the book and began. The first few chapters were pure Pratchett even if the content was the death of my favourite character, but after that the book felt disjointed and unpolished. After the epilogue Sir T’s PA Rob added a letter, he told of their working methods and how books came together, but with the last book there had not been the time to fully work on the drafts, although often the final draft had to be crowbarred from his hands as Sir T was ever quite totally ready to say it was complete and done. It’s well known that this is not his finest, but it is his last and maybe demonstrates that despite his failing mental faculties he was determined to write to the end and not leave us hanging.

Farewell Sir T, Granny and all. 

 
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Posted by on April 22, 2017 in Books, people, Review

 

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