i think i will start a diary but there is a definite slope to the hill

I have decided that I will write a journal, after all lots of famous people have written journals, look at Samuel Pepys although I promise I will not write in code or bury Parmesan cheese in the garden.  I don't know what to call my diary, my nephew Kev who drives the tractor and is not to be confused with my other nephew Kev who owns a motorcycle or Kev who has a sewing machine thinks I should call it "Much-Spondying-in-the-Marsh Manual" but I said that sounds vulgar and I am a refined genteel lady not given to reading or writing manuals.  I do love history, there is so much of it around, I feel I could read a history book a week if it wasn't for all the dates and the appalling people who seem to pop up in the story.  I said as much to that dear historian Michael Wood who came to our village trying to find the right place for his history series. We offered him our village, after all we have a perfectly preserved ducking stool next to the duck pond, although we don't agree with drowning witches. Sharon from the leisure centre volunteered to be tipped into the water, she teaches swimming to seniors so she is used to putting her face in water, we have a renovated bear baiting ring - I know it is used as a sand play pit by the toddlers club but we could have taken the sand away and borrowed a bear from the nature reserve down the road but dear Michael Wood felt somehow we didn't quite fit his series. Having thought about all this history I think I will call my journal "The Musings of a Refined Country Woman Who is Now a Permanent Resident of Much-Spondying-in-the-Marsh".  There is a lot to write about; my neighbours although I don't like to dwell upon the afflicted and all the events of our busy village but now I have decided upon a name I don't know what to write next.  I do know that with the changing of the seasons we Much-Spondyians must keep warm and not sit in draughts as that won't help the bones and the aches and pains will start in earnest. Kev says he likes the title of the journal so that's all set, now I will just bath the dog and then pop out to the duck pond to feed the ducks and think about history, I don't know where to start.

there's a lot of people having a spot of bother

The National Ankylosing Spondylitis Society or NASS is the name of the charity which supports Spondylitis sufferers and other forms of the disease as it comes in many flavours. 

According to their website there are 200,000 inhabitants of "Much-Spondying-in-the-Marsh" and you can join NASS for an annual subscription of £20.00 or £14.00 if you are a pensioner or on benefits. Living here in our pretty little village is of course free and relatives can visit at any time bringing gifts and news from the outside world.

I have only just got back from a visit to our duck pond where I was feeding the local swans, ducks and a couple of geese so I haven't had time to read all their information yet.  After I have given the dog a bath I will get round to it.

I've run into a little spot of trouble

What is Spondylitis?

It is the name given to a group of chronic, long lasting diseases.  There is no cure.  In simple terms it is an inflammation of the spine and joints.  There are several different kinds of spondylitis. 

It can produce inflammatory arthritis of the spine and other joints and inflammation of the ligaments where they attach to the bone.

I had never heard about any of this until I became extremely ill with multiple bloodclots on the lung and the x-rays taken for my chest and back at the hospital showed I had spondylitis.  Yes, I suffered from extreme back ache, swollen ankles, knees and wrists and bouts of exhaustion but I led an extremely busy, stressful, career driven life and I put these symptoms down to stress and long hours making money.  

When I was first diagnosed I could walk without a walking stick, worked full time, travelled around the world, did my gardening and thought I would never have to change the way I lived.  Boy, was I wrong.

A physiotherapist gave me a booklet and said don't bother reading the book just do the exercises.  Of course I read the book which was pretty depressing and I did the exercises which only made the pain and swelling worse.  So, I started to do my own research and tried to find information which I could use.  I found that in Western Australia they had developed gentle exercises - bending and stretching exercises which you do standing under a hot shower to ease the muscles.  I slowly do 5 knee bends, 5 stretches and 5 turns to each side every morning in the shower and that has helped me but don't overdo the exercise because this can make the symptoms worse.

I had been diagnosed with the disease in my fifties.  Suddenly I was sixty years old and everything I had planned to do in what I jokingly called "The Roman Spring of Mrs. Stone" part of my life was blown apart.  I had taken a course to teach English as a foreign language and my plan was that when I gave up work when I was seventy I would go travelling around Europe on a bicycle teaching English as I went.

Now, I can't walk without the aid of a walking stick, can't stand for more than 2 minutes without experiencing extreme back pain and my legs swell up like a baby elephant's legs and my knee joints are so swollen I can't bend my legs to walk. 

Another symptom had reared its ugly head in my late forties but I hadn't realised it was a part of the disease.  I developed an intense sensitivity to light and my sight began to need glasses more frequently.  The Eye Unit at the hospital could not find any reason for my problems and after doing every test they could think of they left it to me to deal with the problem.  I solved the light sensitivity by wearing dark glasses whenever I left the house, even in the middle of winter.  Eventually, I had to give up my job because of my health problems.

Crippled, going blind, no job, no future.  What do you do?

Let's write a book: I began work on what became "Days of Thrift" in November 2010. I wanted to write a book offering help and insight into how to cope with the economic, physical and emotional struggle you face when you lose your job, take a pay cut, lose your home, have to face the harsh times our country is going through.  I wrote what I hope is a sensible, ethical book that provides real help to the jobless, the homeless, the people without hope.  I live in 2011, the start of the twenty first century.  I do not want to regress ninety years to 1920, the start of the last century for my standard of living and I do not want to go back to 1940, seventy years ago for a role model of how to live.  We can do better than that, it doesn't have to be this way.

Wrists swollen, spasms in your arms, eyesight failing?  Let’s write another book.  When I knew my eyesight was failing I bought a software package for my computer called “Dragon” where you gave dictation to the computer.  When you start using the package it has to get used to your voice and for some reason it typed “artistic yetis” instead of the phrase I had spoken.  I looked at the phrase and I loved it, how wonderful, what kind of yetis were these, where did they live, what did they do, why did they do it?

The yetis came to life with stories for children.  Zog, named after King Zog of Albania is the oldest Yeti, he has 3 siblings Sickert, Picasso and Virginia Woolf.  They chose these names because no one could pronounce their Yeti names.  After seeing a documentary about restaurants in England they took a boat to Bristol and opened their café called “The Artistic Yetis Café”.

In the first story I made fun of that first chapter in Dan Brown’s “Da Vinci Code” where he posits statements which are completely, historically documented truth and builds his fiction into them and I have used that format for the start of each story, trying to find the silliest, most obscure facts I can to interest the reader.  I don’t know if they are any good but I enjoyed writing them and so far I have written 10 stories.  When I have written 12 I will find a publisher and illustrator.

I decided it was not enough to find help for myself and my spondylitis, in America there is a website called “Spondiville” which is a support group for sufferers.  The American name, so archetypally American small town stuck in my mind. I had tried to find information that made sense, which you can use to help yourself and it had been a struggle even to find out if there was a charity or group that gave help let alone clear information about the disease.  Although I have very little expertise I set up a blog to be a support for sufferers and called it the very English name “Much-Spondying-in-the-Marsh” the title came from the old radio comedy show “Much-Binding-in-the Marsh” where everyone seems to have run into a “little spot of trouble”. 

Each blog I write will try to give information about treatment and if anyone who reads this has any regimes which work for them, any tips, recipes or ideas please send me an e-mail linda1926@live.co.uk