- North West Lupus Group

Issue 73
Edited by Val Wilson
Sponsored by :
North West Lupus Committee
Chunterings from the Chair
The London Marathon
Walking & Running for Lupus
Food for thought
Chester & Ulverston
This and That
LUPUS UK
Page 2
Page 3
Page 4
Page 5
Page 6
Page 7
Page 8
Visit our website:
www.Iupusuk.org.uk
Reg Charity Nos. 1051610, SC039682
National Office:
St James House. Eastern Road,
Romford, Essex, RMl 3NH
Tel: 01708-731251 Fax: 01708-731252
Director: Chris Maker ACIB
Summer 2013
Distributed by Denise Timmis
The Cheshire Coffee & Chat Group
Gardening & Massage
Healing and Soothing
Raise a Laugh
Self Management
Reflection
Fundraising
Jospice
Need to Talk ?
Page 9
Page 10
Page 11
Page 12
Page 13
Page 14
Page 15
Page 16
North West Lupus Group Committee
www.northwestlupus.org.uk
Patron
Lord Hoyle of
Warrington
Chair/Treasurer/
Website Manager
Elaine Holland,
Secretary / Editor
Membership
Secretary
Val Wilson
Awareness Officer
Janice McCann
Runcorn
Scrapbook,
Booking Secretary
Sally Wilcock
Tyldesley
Committee Member
David Price
Denton
Committee
Member
Ann Thompson
Bury
Committee Member
Caroline Morrison-Pinches
Blackburn
Committee
Member
Newsletter
Distribution
Denise Timmis
Sale
Co-opted members:
Julie Chalmers Chester
Sandra Ratcliffe Darwen
Committee Member
Carol Lord
Bury.
AssociateMember
Margaret Beattie
Manchester
2
Chunterings from the Chair
As I write this, the sun is shining and for the first time this year we’ve turned the central heating off and
opened the windows throughout the house. I also managed to spend the afternoon in the garden
yesterday, revamping my hanging baskets and tubs!
At our recent AGM, I officially took up the post of Chair.
Val, Janice and myself are now working as a tripod in the
running of the committee. I would like to thank the
members of the committee, past and present for all their
help, support and hard work. I am looking forward to
taking up this role, along with continuing that of Treasurer and Website manager,
as our group continues to grow. As a committee, we hope to strengthen the
group; continuing with our existing coffee and chat sessions as well as reinstating and creating new ones. We will also continue to spread awareness of
Lupus amongst the medical profession and general public. We are getting contact from the general public,
prospective members and the medical profession through our re-launched website and our presence on
Facebook.
Our AGM was a scaled down affair this year, due to the North West Group
hosting the Lupus UK National AGM and Conference, held in May at the Crowne
Plaza Hotel in Chester. Approximately 200 people attended this event from all
over the country, but the North West Region was represented well! As a group,
we were responsible for hosting the Meet and Greet on the Saturday evening,
providing a gift that represented the region and the entertainment at the conference on the Sunday
afternoon. I would like to thank the Chester Coffee and Chat group who agreed that the proceeds from
their fundraising event in February, which raised around £1500, could be used to cover the cost of these.
There is also enough left over to finance the cost of producing the
next 12 editions of the newsletter!
The next ‘big’ thing for us is the Disability Awareness Day in
Warrington on Sunday 14th July. We will be having a stand at this
event and members of the committee will be present to talk to the
public, and anyone else who is around, to raise awareness of Lupus.
The event is always well attended and our stand is kept busy.
After that we will be preparing for Lupus Awareness Month in
October. I hope you all remembered World Lupus Day on the 10th May
and used the opportunity to spread the word about Lupus using your
stickers that were sent out with News and Views!
Let’s hope that this weather continues and we have a better summer
than last year. I hope you are all remembering to use your suncream!!
Elaine Holland
3
DAD
An Independent
Living Exhibition and
Family Fun Day
FREE !
Sunday July 14th 2013
10am - 5pm
Walton Hall Gardens,
Warrington WA4 6NS
THE LONDON MARATHON
Thank you to those who sponsored Michael Hargreaves in the
2013 London Marathon on April 21st this year.
He finished without injuries this year but his son Simon was not so lucky. A runner in
front of him stopped dead and caused him to injure his leg. He was determined to carry
on but had to call for First Aid to keep him going.
Due to this holding them back their times were
Michael 5hrs 54mins. 25 seconds Simon in 5hrs 42mins. 12 seconds.
Competition for places is very keen but they want to run again next year.
North West Lupus congratulated Michael on his 11 years of running for us,
raising over £25 000.
He was presented with a certificate and a photograph of the presentation was in the
Blackpool Gazette in an article about Michael’s achievements. He has seen his sister
Lynne live with Lupus since she was 7 years old.
When Lynne was diagnosed her parents weren’t actually told she had Lupus until twelve
years later. It was regarded as too complicated to talk about !
To date she has had 46 operations and has suffered from most of the known symptoms
of Lupus.
For those who were at the Lupus UK Conference, it was Lynne who gave me the
telephone contact for ordering the jars of Lupus Rock !
4
WALKING FOR LUPUS IN AUGUST
Please sponsor
David Price
David is aged 70 and served on the North West Committee for 14 years. Until last year he
was the Chair but had to step down because of illness — he is now serving on the
Committee as a Member. Seeing that his health is now on the mend he has decided to
take part in the Wythenshawe 5km Fun Run (but he will be walking). He is taking part in
memory of his wife Frances.
The date of the event is
Sunday 25th August 2013.
Please support him via the Just Giving website www.justgiving.com/David-Price9
RUNNING FOR LUPUS IN SEPTEMBER
THE GREAT NORTH RUN
“On September 15th my brother, Bruce, and I are running the Great North Run, in support of Lupus UK
and in memory of our grandmother, who passed away on 19th May 2013 at the age of 98. It'll be my first
competitive run for five years or so after rupturing a knee ligament, and my brother's first - so we would
be very grateful for your support.
Kenton Wilson
Bruce Wilson
It would be fantastic if you could support our cause - every little bit will help!
https://www.justgiving.com/Kenton-Wilson
http://www.justgiving.com/Bruce-Wilson1
or catch our Mum, Val Wilson, who will have our sponsor forms at her Coffee and Chat Meetings.”
The course is 13 miles (half marathon) starting in Newcastle and ending in South Shields - you can read
more about it at www.greatrun.org
5
An interesting factoid for us:
Ever walk into a room with some purpose in mind, only to
completely forget what that purpose was?
Turns out, doors themselves are to blame for these strange
memory lapses.
Psychologists at the University of Notre Dame have discovered that
passing through a doorway triggers what's known as an event
boundary in the mind, separating one set of thoughts and memories from the next. Your brain files
away the thoughts you had in the previous room and prepares a blank slate for the new locale.
Thank goodness for studies like this. It's not our age, it's that damn door!
Thanks for that one, Kath from Morecambe.
FOOD FOR THOUGHT ?
How long does it take to burn off a snack?
1 digestive biscuits contains 70 calories
which would take a walk of 0.9 miles to burn off.
175ml glass of sparkling wine contains 130 calories
which would take 1.6 miles of walking to burn off.
50g bag of ready salted crisps contains 271 calories
which would take a walk of 3.4 miles to burn off.
Doesn’t bear thinking about, does it?
Best not to snack, I guess,
then you don’t need to do all that walking !
6
Our Chester Coffee and Chat Group
have changed their venue.
Orchard Suites, Ellesmere Port.
11.30 - 2.00 the 1st Saturday of each month
Contact:
JULIE CHALMERS
JANICE MCCANN
via the northwestlupus.org contact page.
Ulverston mum raising awareness of Lupus
A BRAVE woman who has defied her own health problems to help others has been awarded the North
West Evening Mail Bouquet of the Week. Kathy Fare was put forward for recognition by her mum,
Mary Postle, who was inspired by her daughter’s determination not to let Lupus get the better of her.
Kathy was diagnosed around four years ago, having felt ill for several years. Her condition badly affects
her joints, and is also causing problems with her internal organs. In the past 18 months alone, she has
had 12 stays in hospital. The 42-year-old has had to stop work as a physiotherapist, but joined
together with a number of others to set up the Lupus Support South Cumbria group.
The Ulverston mum-of-two said: “It’s made me channel all those frustrations into something positive.
“I’ve met some really strong, courageous, amazing people along the way. We’re a very proactive,
positive group. We have such a laugh, although we’re also there to support each other through the
hard times. At the end of the day, you’ve got to look for the positives. I’ve got a brilliant husband,
brilliant kids, and wonderful friends and family. I live every day at a time, set myself short term goals
and keep pushing myself.”
“I think that’s important – to know that it’s not all doom and gloom. There is life after diagnosis.”
First published Wednesday, 08 May 2013
Published by http://www.nwemail.co.uk
**********
Kathy has worked tirelessly to spread awareness of Lupus and initiated the idea of having coffee and
chat meetings at several locations in South Cumbria. They have a drop-in on the second Friday of
every month at Newbarns School in Barrow, from noon until 1pm.
Kathy and other members of the group also busy themselves with hand made crafts which are popular
fundraisers. Their most recent coffee morning raised £100 for Lupus UK.
7
THANK YOU ALL for working so hard in your corner of the North West Region of Lupus UK
THIS AND THAT
DISCLAIMER: MEMBERS PLEASE BE AWARE THAT THE INFORMATION FOUND IN THIS NEWSLETTER IS NOT AT THE
RECOMMENDATION OF THE COMMITTEE OR NATIONAL OFFICE. WE SIMPLY PASS ON IDEAS SENT IN. WE DO NOT
SAMPLE PRODUCTS,TREATMENTS ETC. MENTIONED ON OUR PAGES.
EDITOR
NW STAR BY POST
If this copy has reached you by post it will have cost over 60p.
If it arrived by email it will have cost nothing
and you get it in colour !
We send out almost 700 copies of the NW Star four times a year.
It would save vital funds if more people were receiving it by email.
If you would like to change from postal delivery to email delivery
please contact Val on [email protected]
THANK YOU TO THE CHESTER GROUP FOR RAISING MONEY WE CAN USE TO SPONSOR THE NW STAR.
HAVE YOU MOVED HOUSE ?
CHANGED YOUR PHONE NUMBER OR YOUR EMAIL ADDRESS ?
Please remember to let NW Lupus know so we can keep in touch
and let Lupus UK know so you will continue to receive their mail, too.
FACEBOOK
Val hasn’t time to look at Facebook, so if you want
to pass news on please use my phone number,
email address
or even send a real letter with a stamp on !
“TO DO” LISTS ARE LIKE RAINBOWS ………
YOU NEVER GET TO THE END !
8
Gardening tips from Cambridge.
Thanks to the Cambridge Newsletter Team for these useful tips.





Recycle egg cartons as seedling starter flats! When its time to plant, just separate the sections with
a knife or scissors and plant directly into the soil. (The cardboard will decompose into your garden.)
Have access to a pond? Use the algae growing on top as a wonderful rich fertiliser for your garden
plants!
Use old tights as tiebacks for your climbing plants. Cut them into
strips and use to tie them to their supports. The material is soft
enough not to damage the plant and quickly disappears into the
foliage.
Never overlook the cut-price plants or seeds at a nursery or garden
centre…… most plants will perk up with a good feed and some TLC.
With old packs of seeds, if you soak them the night
before you sow them you’ll be surprised how many germinate
even if they are beyond their “best before date!”
THINKING ABOUT MASSAGE?
Tread carefully before you try.
Advice from Linda Rumbles, Regional Contact Support for Lupus UK.
Quite a few people with Lupus have a regular massage and reap the benefits.
But our advice is: it is best to be careful.
Firstly if the person is on anticoagulants i.e. warfarin, or has had long term steroid use, then I would
definitely answer no. People on these drugs tend to bruise easily and a massage unless very light will be
uncomfortable.
People with a lot of inflammation will find any pressure on their body unpleasant and also painful.
However, Indian head massage which incorporates a gentle massage around neck and shoulders could be
good because this is done in a sitting position and therefore the pressure is not so harsh.
Reflexology (working on the feet) is also non invasive and gentle.
9
HEALING AND SOOTHING
GOT A VERRUCA ?
Try this from Carol @ Oldham
Soak a piece of cotton wool in cider vinegar
and fasten with masking tape around the place.
If your skin can stand it - use Duck Tape !
Leave as long as you can bear it.
It worked for Carol. No pain no gain !
A range of leaflets covering all aspects of
musculoskeletal conditions are available
by post or as a download from their
website.
email:
[email protected]
website:
www.arthritisresearchuk.org
BIOTENE products are now back on the shelves after being unobtainable for a few months. Ask your
chemist or doctor for : toothpaste, mouth gel, mouthwash, chewing gum. Used by people with dry mouth
problems.
www.biotene.co.uk
or write to:
Consumer Affairs Department, GlaxoSmithKline Consumer Healthcare,
980 Great West Road, Brentford. Middlesex. TW8 9GS
SYLK
are offering a free sample of their lubricating product for that intimate place.
visit www.sylk.co.uk
or use Freepost address: SYLK ltd., FREEPOST, PO Box 1357, Kingston Upon Thames. KT1 9FN for your free
sample.
It can also be bought at the chemist, or obtained by prescription.
What do the following have in common ?
menthol, vanilla, glucose, camphor, ambergris, cholesterol, vinegar, aspirin and testosterone
They are all made from combinations of just three chemical elements - hydrogen, oxygen and carbon.
By adding nitrogen in the appropriate proportion, you could produce TNT, nitroglycerine, cocaine, caffeine,
adrenaline, nylon, thalidomide and morphine.
10
Raise a laugh !
My girlfriend thinks that I’m a stalker. . . .
well, she's not exactly my girlfriend yet.
My wife said to me: "You’re always pushing me around and talking behind my back". I replied, "What do
you expect? You’re in a wheelchair".
The wife has been missing a week now. Police said to prepare for the worst. So I've been to the charity
shop to get all her clothes back.
A friend of mine moved into a new house at the weekend so I took him over a couple of radiators. Just a
little house warming present.
I've just heard the window cleaner shouting and swearing outside my house. I think he's lost his rag.
I went to my allotment last week and found someone had covered it with 2 inches of soil. I went again
yesterday only to find it covered again with another 2 inches of soil. The plot thickens!!!
My son's been asking me for a pet spider for his birthday, so I went to our local pet shop and they were
£70!!! Nuts to this, I thought, I can get one cheaper off the web.
Statistically, 6 out of 7 dwarves are not happy.
I was driving this morning when I saw an RAC van parked up. The driver was sobbing uncontrollably and
looked very miserable. I thought to myself 'that guy's heading for a breakdown'.
Thanks to Central Lancs ME/CFS for these jokes - I sifted out the REALLY AWFUL ones !
LAUGHING IS JOGGING ON THE INSIDE !
A man opened his fridge and looked longingly at a bottle of cool beer. Then he looked down at his little
dog who was sitting next to him with his lead in his mouth. He closed the fridge and took the dog for a
walk.
As he passed by the pub he saw the sign, “no dogs, except for guide dogs” so he walked on.
A few minutes later he came back wearing a pair of dark glasses, walked into the pub and asked for a
beer. The landlord told him no dogs were allowed in his pub. The man said, “He’s my Guide Dog”. The
man looked over the bar at the small Jack Russell and said, “Guide dogs are usually Alsatians or
Labradors.”
Quick thinking, the man said, “What have they given me ?” and the landlord drew him a pint of beer !
11
SELF MANAGEMENT.
What is it?
Penny Darlington at the University Hospital of South Manchester tells us:
Springing into Action - Taking Control
Key Benefits:











Learn better ways to manage your condition day to day
Stay positive
Manage stress
Helpful tips to control your symptoms
Increase your independence
Improve confidence & self esteem
Increase motivation
Manage your medication more effectively
Meet new people
Achieve your goals
Find volunteering activities
Does all this sound familiar ?
It’s the Expert Patients Programme
the only international evidence-based
self-management programme delivered in over 45 countries.
If you live in South Manchester contact Penny Darlington,
[email protected]
In Oldham contact Jill Firth
about their Challenging Arthritis Course [email protected]
In Middleton contact Julie Dawson,
[email protected]
In Central & Eastern Cheshire contact Caroline Warner,
[email protected]
If you live elsewhere
and would like to find if there is a course in your area, look at www.expertpatients.co.uk
type in your postcode and see if anything comes up.
CONTROL YOUR CONDITION, DON’T LET IT CONTROL YOU.
An amazing act to follow:
Pauline Obi, a member in Manchester has had her life affected by Lupus in so many ways. She is now on
dialysis but doesn’t stay at home moping. Her latest idea is to volunteer as an extra for Granada TV and
through that she has met new friends including a journalist who was so impressed by Pauline’s story that
she asked if she could write a blog about her. It was released for World Lupus Day.
Here is the link :
http://lovemymondays.blogspot.co.uk/2013/04/corriecourage-and-kidney-transplant.html?spref=tw
12
REFLECT ON FRIENDS WHO HAVE GONE.
We have heard that Mary Hickson of Garstang
has died from complications following a Heart Attack.
She loved to attend our chatty get-togethers, we shall miss her.
Stephen Smith has told us that £412 was collected in Shelley’s memory.
That amount is a tribute to her popularity and the sadness of her family and friends.
The money was sent directly to LupusUK
We often think of Stephen who is missing her so much.
FEELING SAD ?
FEELING BLUE ?
FEELING LONELY ?
Try to talk to someone about it.
“A problem shared is a problem halved”.
Don’t keep the sadness inside you, it will grow and grow.
See the back page for a good place to start.
13
FUNDRAISING
Thank you so much to all the people below for thinking of Lupus UK.
Every little helps.
A special Thank You to those people who have donated
in memory of a dear one,
so kind of them to think of us at such a sad time.
FUTURE DONATIONS: Where possible, please make out cheques to “North West Lupus Group”, and send to
our Treasurer, Elaine Holland, address on page 2.
£10 per member is retained for our local use in supporting our members in the North West. Any surplus is
donated to Lupus UK.
After the AGM this year, we sent £2000 to National Office. You can see in News and Views how these
monies are apportioned for research, Lupus specialist nurses and towards supporting members.
Sandra Ratcliffe
Crafty Grafters
Young at Heart
Kath Dempster
Breck Club
Beryl Moore
G Barlow & Sons
G Barlow & Sons
C Middleton
J Knowles
Mr & Mrs Broadbent
J Haigh
E Ratcliffe
J McCann
Chester Support Group
The Orchard Suites
N Stokes & H Harrison
K Dempster
D Ward
Mrs Smith
Cheadle Weightwatchers
V Wilson
AGM
National AGM Raffle
E Holland
Waitrose Cheadle Hulme
Lymm & District Lions
Kath Dempster
Donation
Donation
Donation
Fundraising
Fundraising
Fundraising
Donation
Donation
Donation
Donation
Donation
Donation
Donation
Fundraising
Fundraising
Donation
Fundraising
Fundraising
Donation
Donation
Fundraising
Sale of lupus goods
Sale of lupus goods
Fundraising
Donation
Donation
Fundraising
Fundraising
£ 12.50
£ 15.00
£ 50.00
£ 100.00
£ 16.63
£ 500.00
£ 145.61
£ 10.00
£ 10.00
£ 5.00
£ 20.00
£ 20.00
£ 10.00
£ 75.00
£ 1,399.07
£ 100.00
£ 100.00
£ 100.00
£ 5.00
£ 5.00
£ 3.79
£ 30.00
£ 45.00
£ 436.63
£ 3.94
£ 250.00
£ 150.00
£ 170.00
Loose change box
In memory of Doreen Cream
In memory of Doreen Cream
Handmade crafts
Collecting tin
Disco in memory of Maggie Booth
In memory of Margaret McConnell
In memory of Margaret McConnell
In memory of Margaret McConnell
In memory of Margaret McConnell
In memory of Margaret McConnell
In memory of Margaret McConnell
In memory of Margaret McConnell
Auction of Everton football
Chester Support Group Fundraiser
Chester Support Group Fundraiser
Handmade cards & workshop
Handmade crafts
Collecting box
Loose change box
Community matters donation
Fundraiser event
Sale of handmade goods
We have been invited to boost our fundraising by supporting “Jospice”
See next page if you would like to help in this way.
14
15
GOT lupus ?
NEED TO TALK ?
Our telephone contacts are people who have attended a Training Course
on listening skills and have spoken with many other people living with Lupus.
Many contacts can now also be reached by email
The contacts in our region at present are :
Our Telephone Contacts.
Caroline Morrison-Pinches ( Blackburn)
Sally Wilcock (Tyldesley)
Elaine Holland (Stockport)
Val Wilson (Blackpool)
Nasrin Ghayouri (Bury)
Monica Maddocks (Chester)
Isobel Baxter (Whitehaven)
Apologies to Isobel - she was wrongly omitted from the list last time.
Please use the northwestlupus.org websire contact page
or see Lupus UK News and Views Magazine
to locate these telephone numbers.
Please remember these people have Lupus, too, so don’t ring after 9pm
DO THE VERY BEST YOU CAN
TO STAY AS HEALTHY AS YOU CAN.
IT TAKES MUCH MORE THAN JUST THE MEDICATION.
IT’S NICE TO BE IMPORTANT
BUT IT’S IMPORTANT TO BE NICE.
16