What the ……!

Although I only got diagnosed a week ago, it is obvious that I’ve had MS for about fifteen years, it is just that in the past few months it has grown into an embuggerance.  This week has been a learning curve and, oh boy, have  I’ve learnt a lot.

Did you know MS is like pregnancy?

Stop gasping and giggling and stay with me… when you are pregnant and it is becoming obvious, friends, acquaintances and complete strangers will comment on your condition and amongst them will be the DOOMSAYER. This person will either themselves have been in labour for a hundred and fifty hours and suffered the agonies of the damned or they will be closely related to someone who has. Naturally this tale of unrelenting torture will inspired the first time mother with wonderful, soothing confidence and ensure she will look forward eagerly to her own labour.

As my child bearing days are far behind me (and BTW, I shoved babies out with no problem at all), I thought I would be free from the DOOMSAYER, but I was so, so wrong. Just as in pregnancy, they will know another person with MS and they have been confined to a wheelchair for years, they are blind, unable to swallow and suffering terribly in equally vile circumstances and for some reason they are always years younger than me! I’m not sure why being younger is such a vital detail, but apparently it is.

Why do this? Why with solemn expressions of deep concern do some feel the need to frighten the living daylights out of the vulnerable and gullible? I’m immune to this rubbish, I’ve done my research and while, as any soldier will tell you no plan survives the first encounter with the enemy, he will also tell you no intellgence work is every wasted. I’m prepared and I know that Mr and Mrs Doomsayer adore embellishing, if they can add extra beads, some glitter and a ribbon, they are as happy as pigs in muck!

The other interesting thing I have found is ignorance. You would have though after “The West Wing” and other programmes, most people would have a nodding acquaintance with the condition, but again, the scales of preconceived ideas have fallen from my eyes, at least one person has patted me gently on the arm and hoped I will be better soon!!!!!  I’m expecting a “get well” card and will be disappointed if it doesn’t come.

On a more positive note, I feel surprisingly well. I put this down to my having stopped fighting. I’ve stopped trying to do thing the way I used to do things and begun to do them the way I can do them. I’ve stopped trying to walk as I used to and slowed to the pace my body likes, surprisingly I can go further slowly than I could when I was trying to be normal. If I’m tired I don’t fight it, I rest and don’t feel so wrecked as a result and if I’m in pain I throw painkillers down my throat like sweeties and don’t give a damn about possible side effects.

Soon I am off for a long MRI and an appointment with the neurologist. I have made a list of questions ( research, research, research) and with the answers I hope I will be armed and ready for the campaign ahead. One thing I do know is that I will carry on writing and quilting for as long as I possibly can. I’ve got a Mrs Lillicrop story on the boil, two books telling me they would like to be written and someone said they will hit me with a heavy object if I don’t write a sequel to “The Tattooed Tribes”, plus I need to produce at least two excellent quilts for exhibition in 2020.

“Second star on the right and straight on until morning” people 🙂

 

 

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Hurrah, Hurrah MS

Weird title I know, but bear with me.

The first thing you need to know about me is that I have the self worth of a house brick. The reasons for it are ancient and boring, but my default position on almost everything is “its my fault.”  So when I started to have trouble walking I put it down to spending way to much time at a computer screen….so it was my fault. When I started to get blurred vision, again it was too long looking at a screen, so it was my fault.

I’ve always been a big girl, dieting was a series of yo-yo events (although I have now found one that works and stays working), but I am overweight and as all the doctors and the media tell us, being overweight is the cause of many problems. So my increasing dependence on walking sticks, the pain in my legs, the burning sensations and the inability to raise one of my feet was my weight, my lack of moral fibre made me fat so all of that was my fault!

Then my bladder got to be a problem, but I’ve had two babies and everyone knows natural childbirth can bugger up the water works if you don’t do your pelvic exercises afterwards. Obviously I hadn’t done them enough, so equally obviously all this was, as usual, my fault.

Why, you ask, didn’t you take all this to your doctor? Because they might look at me with pitying contempt, then they would sigh and give me another diet sheet and tell me I needed more physiotherapy despite the amount I’ve done over the years. Obviously I’d not done enough or done it properly and who do we think is at fault for that. I couldn’t face hearing someone with knowledge confirming everything, all the time I stayed away, shoved pain killers down my throat and shut myself in the downstairs cloakroom to cry, the safer I was from the accusatory finger, the sad shaking of the head and the unspoken “what the hell did you expect, you stupid woman!”

At this point I must add a point and a confession…the point is that about fifteen years ago I started having a problem with my right eye…only the right. I had an MRI and was diagnosed with optical neuritis. I lost thirty percent of my field of vision and ended up red/green colour blind in that eye, but that was all…no-one said anything else, no specialist or GP said anything about it, but I googled it and found a reference to it being a possible symptom of multiple sclerosis, but I had no other symptoms, so put it down as “one of those things.” I’m not a believer in the benefits of Dr Google, I think you can put in what you think is wrong with you and a common virus can come up as Ebola and scare the daylights out of you, so I don’t do it. .

Now the confession, despite what I just said, in the last few months I have been putting in what is wrong with me and the same answer has kept coming up

I think I can hear a number of you muttering “oh, for god’s sake!” at this point and, dear reader, you would not be alone, the person screaming “for god’s sake, woman!” the loudest is the wonderful man I’ve been married to for more years than I will admit here, but and its a big but as far as I’m concerned , that little voice inside me which is repeating its mantra of “don’t be silly, you know its not that, its all your fault, if you had sat on a better chair, if you had blinked more, if you had lost weight, if you had done the exercises etc etc

However, his screaming finally got louder than the bloody voice in my head and he got me to the doctor and yesterday we got the result.

I have MS.

I sat in the surgery and couldn’t stop crying, not because I’ve got MS, that is what Terry Pratchett called “an embuggerance”, but because none of it is my fault, NONE of it, there is nothing I have done which caused this and I need feel no guilt. I cry for joy and I think my doctor is going to add this to her “days for my memories” as she said, it isn’t often you tell someone they have MS and they are delighted.

I know for a lot of people this news would be devastating, but I’m not young and my children are long since grown up and are not dependent on me, so it is no more than the afore said embuggerance. I know there will be difficulties , but my husband is looking forward to a blue badge and me being in a wheelchair, so we go in the direction he wants to go and I’m not wandering off somewhere and I have my eye on a snazzy mobility scooter which I will use to plough a path through town.

I have MS, hurrah!

 

 

In Flanders Fields

One hundred years ago in Sunday the guns fell silent.

They say there is hardly a family in Britain, France or Germany which did not have at least one casualty of war, be it a close relative or  more distant one. My grandfather lost a dearly loved brother at Arras and my grandmother lost her eldest brother in The Somme. Neither of them has a known grave, the mud took them and they are what Brooke called “some part of a foreign field”

But they are not forgotten, every year I plant my poppy crosses in the turf at our local memorial and I write their names on each back of each one…Sidney Raymond Harris and John Henry Lester.

How long will they be remembered?

I don’t know, it is not as if their names will be fresh remembered to the ending of the world, to paraphrase Shakespeare, but as long as I live and my children and maybe my grandchildren, I like to think that every 11th November, someone who shares their lost genes will plant a little cross with a red poppy in their name.

Was their sacrifice worth it? Did it solve anything? Who knows, it is probably still to soon to say, but when their country thought it would and asked them to go and be soldiers, they went. If we recognise anything it should be that sense of duty and we should be grateful to them and all the others who went with them.

 

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The Occult Detective Quarterly

Hi everyone, sorry I haven’t been around for a while, but here we are again.

There are in this wicked old world some publications with the most delicious names, but few can match the delightfully named “Occult Detective Quarterly”.  This journal makes no attempt to hide its content, it does exactly what it says on the cover.

To quote its own web site

OCCULT DETECTIVE QUARTERLY MAGAZINE is devoted to those intrepid investigators who investigate the weird, exotic and bizarre. These are the people who explore the darkness, both within and beyond, often to their own peril and the expense of their very lives and sanity.”

As some of you know, when not writing scific/fantasy novels packed with soldiers and young heroes of dubious morality, I like to indulge in writing short stories of the weird and wild and wicked, some of you will remember the man who had sex with his garden pond and the one about the mushrooms.

If you also feel the need to have fingers crawl up your spine and to check behind the curtains every time a draft makes them move, I’m sure the contents of the quarterly will be just the thing to interfere with your sleep pattern.

If you are interested, may I direct you to John Linwood Grant’s excellent blog where he talks about the OCD and about his beloved long dogs (lurchers). There are links to were to obtain copies of The ODQ as well.

greydogtales.com

 

So far I’ve not had the honour of being published in the journal, but I am to have the privilege of being part of their first anthology.

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There I am, first on the list 🙂

I’ve mentioned before my occult detective, Mrs Lillicrop, and this will be her first outing. I hope it won’t be her last. The story is set in the 1930s and Mrs. Lillicrop may or may not be, a war widow. She lives in Chelsea and it is important to note that she doesn’t knit.

 

 

 

Running in the Family

My great grandfather, Alfred Harris was a story teller. He was very good at it, and while never sinking as low as fabrication (unlike his great granddaughter) , he could take a small nugget of fact and spin it like a politician with an election to win. These stories have become Harris family legends, believed implicitly by several generations and handed down as “hand on heart, it’s true as I live and breathe” truths, never to be questioned.

I’m a story teller. I make no pretensions to literature, I know what I am, a spinner and a weaver of whimsy, one step away from the old men and women who sat by the fire in the cave and told tales to keep the night away and stop the kids making a nuisance of themselves. Over the years I’ve sat in warm kitchens and back parlours and listened as the old people drank tea, smoked endless cigarettes and remembered. I’ve heard all Alfred’s stories told by his children and his grandchildren and I’ve given up on the “pinch of salt” where they are concerned and substituted a fist full instead.

Having said that, I have to give Alfred his due, he may have being stretching the truth until it pinged, but sometimes, there was a grain of truth in what he said, a much abused grain, but it was there. Like how the family once lived in Jerusalem…he was right, we did once live in an area of a small Surrey town which was colloquially and ironically know as “Jerusalem” on account of its undesirable reputation. This part of the tale was, of course, omitted and the impression of sand, heat and holiness allowed to grow and grow. I swear there were times when I could smell the gefilte fish and hear the muezzin call from The Dome of the Rock.

The one about us being descended from Spanish Gypsies makes me very suspicious, but one the other hand, genealogical research as proved a direct ancestor was born at sea in about 1800. There is no more information so far, but I wouldn’t be surprised if it turns out  Spain is involved some where. I have strong doubts about the gypsies, if there is anything in it, it will probably involve a cargo of something very dull and a delayed voyage.

One of the other favourite family stories was how a Harris, back in the good old days, fought Tom Cribb, the famous bare knuckle boxer whose fight with Molineaux is a legend in pugilistic circles and familiar to any reader of Georgette Heyer.  My grandfather, Alfred’s youngest son, was very fond of this one and would tell it the second boxing was mentioned.

Pinch of salt? Please…pass the cruet.

However, on my genealogical travels down the branches of the family tree, I discovered that Alfred’s mother-in-law (deceased long, long before he met her daughter) was the child of a stonemason and came from a little town in Herefordshire called Fownhope.

One day in 2009 The Military Historian and I happened to be on our way to somewhere in Wales the long way round and we chanced to see a sign pointing to Fownhope and on the spur of the moment we decided to go and have a look.

It is a charming village and has two pubs, The New Inn and The Green Man. We decided to have lunch in The Green Man and on the wall is a large notice telling all about a former resident of the town and the pub …wait for this…was a former famous bare knuckle fighter called, not Tom Cribb, but Tom Winter. Not only that, but later research showed my ancestor lived in the old mews behind the pub and had several brothers. What are the chances of a couple of small boys not taking the opportunity to beg for a chance to spar with the great man?

Look Tom Winter up, my long ago ancestors didn’t get to take a swing at Tom Cribb, but he did.

The story of fighting with a famous boxer had obviously been told to Alfred’s wife by her mother and she in turn told it to her husband and great-grandfather couldn’t resist adopting and embellishing the story and making it a Harris legend.

Is there a moral to all this? Well yes, a couple – the first being don’t take family stories as gospel. I hear a lot of them at genealogical fairs, all too often preceded by the words “you’ll be interested in this”, which, believe me is very rarely the case and I can’t help wondering just how much truth there is in them. Are they “Jerusalem” stories or is there some truth underneath?

The other thing, and this is the one I like best, is never let a good tale go untold.  After all, there’s Granny’s Crown Derby Tea Service to be explained, and the day Aunt Grace’s husband came looking for her with the gun, and who exactly was George Clement Smith?

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