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Archive for December, 2012

one year on

A little over a year ago I decided to follow the advice given in a book as to how to treat my arthritis without drugs.  In this post I declare my intention of trying this practice for a full year as there are no quick fixes.  I am pleased to report that although I have not stuck tightly to all the aspects of the regime I have been fully consistent with many of them, and I have adapted others in the light of new information gleaned along the way.

An important point to note is that I was lucky enough to be able to try this experiment since I wasn’t really on any serious medication to have to give up.  In fact all my life I have done my best to avoid taking up offers of drugs so compared to many other people with Stills Disease or similar related conditions I have only taken relatively small or infrequent prescriptions of drugs such as cortisone, prednisolone, methotrexate and celebrex.  The one drug which I have relied on heavily through six decades is aspirin.  I count myself fortunate to some extent that the modern drugs now offered to patients just weren’t available during my younger years.  Nowadays current thinking and practice is to treat the onset of Stills Disease agressively with drugs to prevent joint damage.  I certainly have suffered joint damage, and in the end lost the sight in one eye on account of my Stills Disease, but apart from that I have been fortunate to have lived a relatively healthy and productive life into my sixties.  I was a schoolteacher (albeit part-time) for more than twenty years) and I have been blessed with a healthy son and two grandchildren.

When I was younger, a student facing my first major operation on my knee, I used to explain to people about the cause being my ‘arthritis’ and I used to always maintain, “at least it doesn’t kill you”.  Sadly I was wrong in this belief.  When I was growing up in the fifties and sixties I was aware that I’d had a diagnosis of Stills Disease as an infant and that the condition was related to Rheumatoid Arthritis but I wasn’t often or hardly aware much of the time of symptoms other than those that more related to osteo-arthritis.  It was all the same to me, in my mind I was just more susceptible to ‘wear-and-tear’ damage.

Only very recently as a result of interaction via the internet have I come to understand the full scope and awful potential of Stills Disease.  About a year ago I made a friend online via Stills Disease.  Her name was Laura and she wrote an erudite and highly informative blog about the Disease and the personal progress of her illness.   Earlier this month the terrible news of her death reached the Stills community and this awful sudden ending of such a young and beautiful life has shocked me to the core.   Hopefully her blog will stand in perpetuity as a useful source to others and a legacy to Laura.  A memorial site for her has been created here.

Laura had tried just about every drug available and yet they couldn’t save her!  I, on the other hand, have tried very few and yet I’ve lived to become a pensioner.  It does make me wonder whether they have got it wrong and more research should be done into less agressive forms of treatment, more natural therapies and diet, for example.  To me it makes more sense to nurture the body’s good cells to better help them resist the rogue destructive ones.

So I shall be sticking to my current diet/lifestyle in the hope of further or at least continuing improvement.  Today we went swimming.  The disabled changing facilities were in use so I had to manage on my own in the women’s changing room.  A year ago no way could I have managed this.   I do have a few concerns right now, one being swollen ankles.  These have occurred before, but usually I can get rid of them with better application to my diet and exercise.  Exercise is what I have been missing out on this last month, mainly due to the ongoing abysmal dark and wet weather.  I am unable to potter around in the garden because of the mud and fear of slipping, and the damp doesn’t help my old bones.  Visits to the swimming pool have been lacking due to other seasonal priorities, but are firmly back on the agenda for the new year.

I also have two more new ‘weapons’ in my  armoury against Stills, both oriental in essence.  I have been adopted as a recipient of long distance healing by a friend in Japan.  I am grateful for this and keep an open mind.  And on Thursday I am going for an initial session of the Chinese massage technique, Tuin Na.  This came about as a result of reading this page and me then finding a local practioner.  So I go forward into the New Year with thankfulness and optimism.

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How many photos do you have of yourself with your friends as a teenager? Nowadays I guess, on account of digital cameras and the internet, the answer for today’s teenagers is in the  hundreds, if not thousands!  Yet back in the fifties when I was experiencing my teenage years few of us thought to take photographs when we were out and about having fun.  Back then we did have  cameras  but a film would last us a long time inside a camera before being taken out and taken in to the chemists to be processed.  And as often as not many of the resulting photos proved to be a disappointment, usually due to operator error.

So when I saw the facebook competition currently being run by Arthritis Reasearch  I wondered what appropriate pictures, if any, that I might have to enable me to enter.  The chance of winning this competition appealed because I have wanted to revisit London for some time now but for various reasons it has proved too complicated and difficult.  The website entices, “Win a stay at a top London Marriott Hotel followed by afternoon tea at the Goring Hotel and a professional photo shoot”, so I thought I’d have a go.

Since the photos from my teenage years are few and far between I knew there was a limited choice.  The following picture of me and my friend Sue at Christmas time is a favourite, partly because I remember loving my dress so much at the time.

susan&trishxmas

But seasonal as the pic is right now at this particular moment in time it would be a bit odd to recreate in spring or summer for the purposes of the photo shoot.  So I needed something different.  The competition requires a picture of the contestant as a teenager having fun with up to five friends.  That narrowed the choice down to just two photos that I could recall having available.  The terms and conditions of the competition require getting consent from each of the other people in the picture;  that left me with just  one of the two photos fitting the criteria, since in the picture shown below I never knew the names of some people, let alone whether they are even still alive today!

268603_108880455871810_2316104_n

There do exist a few other photos from my actual teenage years, but the ones I can currently locate tend to be of me alone….here’s one of my favourites, taken during a Saturday morning art class for school pupils held at Leeds Art College:

Satmornartclass_edited-1

Another small set are ‘somewhere safe’ which I have yet to discover, and they were taken with a group of friends in a student house in New Malden near Kingston-upon-Thames during the week that the Beatles’ “Sgt. Pepper” album came out, so I would technically still have been a teenager,  that being five months away from my 20th birthday.  These though, even if I could lay my hands on them, would be of no use for the competition since again I have lost touch with the once- very-close friends within them.  I wonder how many teenagers or relatively young people reading this now could accurately guess which friends from now they will carry with them through to their mid-sixties?  I have been fortunate to have a  number of good friends throughout my life, some much closer than others.  One doesn’t imagine losing touch with any of them but it does happen, maybe less so nowadays thanks to the internet.

In the end there was really only one picture properly suitable for submission as an entry for this competition.  Here it is.

Brid1961

I am the one on the left in the picture. This was only about a year after I was released back into the community from the Marguerite Hepton Orthopaedic Hospital and having to after being confined to bed for almost a full year.  I was on holiday at the seaside resort of Bridlington for the week with Sue’s family and we three girls spent most days on the beach.  This photo was snapped by one of the photographers on the promenade one day as we were on our way there.  I don’t remember how much we paid for it but I am glad we have it as a memento of that time.  We used to make a lot of our own clothes in those days.  A yard and a half of fabric or even a lesser remnant from one of the stalls in Leeds market would make a simple skirt.  Gingham was the fashion of that particular moment in time and,  if I remember correctly, Sue’s skirt was pink and white and mine was mauve and white.

Anyway, back to the competition.  When I took the decision to enter I read  the terms and conditions pertaining to submitting an entry, the main one being getting the approval of the other people in the picture.  I rang Sue and was assured that both herself and her sister were up for it.  What I didn’t actually find to read through until several days later was the detail of what is included in the prize, or more importantly, what isn’t.  The prizewinner’s party have to pay for their own travel.  For us in the north of the UK this is potentially quite an expense.   Economical travel to London is possible but depends on booking well in advance, and having time to spare.  Unless travelling by car (more about that option later) arrival destination points in London are basically either Kings Cross station or Victoria coach station.

The hotel accomodation provided is at Twickenham.  To get into London from there requires a ten minute walk to Twickenham station, more than I could manage, and a twenty minute journey to Waterloo.  I’m not quite sure how far away from the Goring Hotel that actually is but it would necessitate travel by taxi for me to avail myself of the free afternoon tea.  And then we’d have to make a return trip of course.    You can see how the costs are mounting up.

Transport from the Marriott hotel IS provided to the studio however for the photoshoot, but there is no mention of when this would be.  I’m imagining it would most likely be in the morning, with the afternoon then free for the Goring experience.  But I’m rubbish in the early mornings, and presumably the competition organisers expect the winners to have arrived in Twickenham for their overnight stay the previous day.  This is fine, but after a morning photoshoot and afternoon tea at the Goring I would be in no fit state to cope with economy travel all the way back up north!  It would be far too long and tiring a day for me.  Also it would necessitate either returning to Twickenham to collect overnight luggage before travelling on to catch either a coach or a train from wherever, or carrying this with us to our afternoon tea.  I at least would need to pay for a second night at the Marriott or another more conveniently located hotel prior to making my return journey home.

Even were we to make the journey down south by car, if one of my friends were willing and able to drive, most of the travel problems already identified would still apply.  And last but not least, I haven’t been anywhere for the past few years without my carer, my husband.  I would be reluctant to travel and be away from home  with just my friend for support.  Although we are old friends I feel that the responsibility would be a bit of an imposition, therefore I would be better able to enjoy the experience if my husband could accompany me.  This would also then necessitate the additional cost  for his accomodation.

Originally the competition was due to have finished by now but the closing date has been extended until 4th January.  I’m still voting for myself each day because part of me would really like to win, despite all the practical and financial problems I have just identified.   Quite a few online friends seem to have voted for me too, but only they know who they are, apart from those who have declared their votes via facebook comments.  To read all the competition terms you have to click on the ‘submit an entry’ link and scroll down to the bottom.  Here it becomes apparent that the entry with the largest number of votes is not necessarily the winner, so I’m still in with a chance, if you’d like to vote for me

I have written this post about the competition to explain how it is for many of us who have and live with arthritis in one of its many forms.  I long to be able to visit London, mainly to go to art exhibitions,  museums or music events, but for all the reasons above it just isn’t possible.  I thought that the prize in this competition would  be an ideal treat should I be lucky enough to win, especially since it is being run by Arthritis Research UK presumably  for people who have arthritis, but perhaps the organisers haven’t thought sufficiently about the various ‘equal opportunities’ issues faced by all of the potential entrants?

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