Telephone: 07977831792 E-mail: fibromedway@yahoo



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Telephone: 07977831792 E-mail: fibromedway@yahoo.co.uk

Website: fibrosupportmedway.btck.co.uk

[insert date] ISSUE 69[insert issue no.]

Next Meeting: Thursday 25th September 2014 at St Stephen’s Church Hall, Maidstone Road, Chatham, ME4 6JE. 1.00pm to 3.00pm

Speaker – September meeting – Magnetic Jewellery

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MEETING DATES FOR 2014

September 25th November 27th

FUNDS UPDATE

A funds update will be provided on the next newsletter due to holidays.

FACEBOOK PAGE

The facebook page is now live and called Medway Fibromyalgia Support Group. A couple of people joined following the July meeting but we think it will become a valuable source for people in between meetings. We are also thinking about arranging in catch ups in between the usual bi-monthly meetings through the facebook page when numbers increase. Any suggestions as to what people would like from the facebook page please see either Pat or Susan.

ASDA – CHOSEN BY YOU….GIVEN BY US SCHEME

Thank you to everyone who had been putting tokens in the box. We came 2nd overall with the Ecmo machine winning, which is a very worthy cause. We were presented our cheque of £50 at the July meeting which has been cashed and will be used towards that cost of the new leaflets, pens and stress balls.

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MARGARET & RON

Margaret & Ron returned as the speakers for the July meeting. We asked Margaret to do a write up for the newsletter for those of you who could not attend the meeting.

Written by Margaret Robson

It has been two years since we were here, and life has changed radically for us.

When I set up the Medway Support Group I had no intention of setting up or running a support group, but somehow one thing led onto another, as you can read on the website and I found myself doing just that. In 2004 we had grown to about 200 members and our income was such that it was necessary to become a Registered Charity. We were accepted in July 2004. This, apart from the recognition it gave us, also meant that it was easier to raise funds for the Group. We had many successes of funding bids, including three large amounts over three years from the now defunct Grassroots Government-run funding source, a Medway Council Grant, a large amount from the Candis Magazine funding source, and donations from various banks. We also had large amounts raised for us by various people who supported our aims.

A few years after starting the Group, Ron was able to take early retirement to help me, and this enabled the group to do more and to expand. He took on the role of Public Relations and also was able to read and digest all the many consultation documents that we were sent by the NHS and Medway Council for us to comment on and respond to. We also attended many consultation meetings so that we could put forward the views of people with Fibromyalgia and raise the profile of the condition.

We enjoyed every minute of the ten years we ran the Group, despite the fact that it was hard work and became like a full-time job for us, living, eating and breathing Fibromyalgia. I was also the Regional Co-ordinator for Kent for many years and set up six other Groups in Kent that are still up and running.

We had always wanted to live in Eastbourne. I had been going there for at least 40 years to visit and later care for a Great Aunt. So we did know the place really well. We often said, if only we could live here. Well, as the ten years of running the Charity was approaching, the chance to move came along. We were very fortunate to find exactly what we wanted in a very short time – an apartment overlooking the waterway, with a balcony, just around the corner from the main marina and within three minutes walk of an out of town shopping centre. We really have never looked back. We made so many friends really quickly and we cannot believe how many people we know in just 2 years. There is just so much to do and see here. I can thoroughly recommend it!

Of course I still have Fibro, but what has helped is the pace of life that is so much slower. Everyone is really friendly. People have this idea that Eastbourne is full of elderly people but that is not true. The average age is the mid forties. One of the advantages is that everything is on the flat, and there are so many places to walk, such as the three mile long promenade, and all the walkways around the harbours and marinas where we live. A great advantage of living in a thriving seaside town is the number of coffee shops so our walks always include a coffee stop (or peppermint tea for me).

People really do have time for you in Eastbourne. Shop assistants are friendly and the whole way of life is stress free. This is not to say that Fibromyalgia goes away, but that the symptoms are not aggravated, and this makes it easier to cope.

We do still get called upon to give out information and support to those with Fibromyalgia. We don’t go seeking it. In fact we made a conscious decision not to get involved in a Fibromyalgia Group in Eastbourne. However, it seems that people with Fibromyalgia do come into our line of vision from time to time and we give them information to help them.

All in all Eastbourne has been a great move for us. People have asked if we wish we had done it sooner, but I have no hesitation in saying that, no, the time wasn’t right, and I don’t regret the time that we spent running this charity as it was an honour for us to do so.

COMMITTEE MEMBERS

So that you can all recognise the committee members at the meetings we will all be wearing our new T shirts. If you have any questions regarding the group or are able to help with distributing the new leaflets please come and see us.

CONTACT DETAILS CHANGE

The new contact numbers for the group is 07977831792 which is operated by Margaret Randerson. This number is available for anyone who has or cares for those with Fibro and who need to talk about their concerns or get advice on accessing information.

LIBRARY BOOKS & DVDs

Books & DVDs about Fibromyalgia are available for loan at each meeting. Margaret Randerson is happy to deliver and collect within a reasonable distance in Medway. Margaret can be contacted on the Group’s mobile number as above.

Please ensure that you return all Library items at the next meeting after they have been borrowed as others may be waiting for them. If you are unable to do this please contact the Librarian.

WHEELCHAIR LOAN

We have 2 wheelchairs to loan out to members. Please call the group phone number 07977831792 to book.

YOUR GROUP, YOUR VOICE

Your Fibromyalgia Support Group Medway Committee wants to hear from members about what YOU would like to do at meetings, which aspects of the support group are most important to you, which subjects and speakers you are most interested in. We are just as interested in hearing from those who prefer not to, or are unable to attend meetings, as this will help in producing Newsletters and other materials that give you what you need from YOUR support group. Please let us know by emailing on fibromedway@yahoo.co.uk, speaking to one of the committee members at the next meeting, or contacting us on the group telephone 07977831792.

USEFUL CONTACTS

NORTH KENT GROUP

Contact Philomena (Phyl): 0844 887 2348

E-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Contact: Julie Amos: 0844 887 2442

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Jean Spain: 01795 471324

Email: sittingbourne_sheppeyfibrosupportgroup@live.co.uk

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NEWSLETTER

The inclusion of articles and features in this newsletter does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given in this newsletter, should always be discussed with a medical professional. The Group/Association cannot be held responsible for omission and/or errors.

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