About the Wellies Network (no longer active)

by AMG on Tue 15 Jul 2008 01:14 BST

The Wellies Network so far consists of 75 people in different parts of the UK. The aim of the network is to share support and experience between people who are on the road to recovery from CFS/ME, around issues such as, for instance:

- living with one foot in the well-world and one foot in the ill-world (and how lonely that can feel)

- the stress and financial implications of making the transition back into work/a more active way of life

- getting out of the "benefits trap"

- whether or not to be 'out' about the illness, especially at work

- being proactive and creative at finding the things that help you to work around your limitations

- working out how to have a social life again, particularly if you've moved to a different part of the country as a result of the ME

- taking on sustainable commitments - as far as possible avoiding the boom & bust/crash & burn approach, and letting go of things you find you can't sustain

- how to avoid recreating any patterns that contributed to getting ill in the first place

- dealing with setbacks - the stress of letting people down, and the fear that the ME’s back for good

How it works

1. Do pass on the details to anyone else you know who may be interested, or post an article about the network in your local support group newsletter. The more people who join, the more we can all help each other.

2. Joining: To be a Wellie, there's no specific requirement in terms of "percentage wellness" or anything of that kind. The basic rule of thumb is that if you're somewhere on the road to recovery and want to connect with people about issues that raises, then you're a Wellie. To join simply e-mail me (Anne-Marie, the network co-ordinator) atnetwork@wellies.me.uk . It's also useful to know what part of the country you live in.

3. Emailing Questions to the network: e-mail me your queries, network@wellies.me.uk , and I will forward them to everyone in the network (blind copied) so people can share their experience with you.

4. Emailing Replies: If you're replying to someone's question by e-mail, and are happy for your reply to be posted on the website, then Reply All to send a copy to me, so I can add it to the site.

5. We very much welcome your stories about how you managed or are managing your recovery, and the issues around dealing with setbacks. But queries on specific symptoms and treatments will not be circulated or put on the website as there are a lot of other resources out there for issues relating to illness, rather than recovery ... though we can forward them on to the Interaction E-mail Noticeboard for you if you like.

6. Website: Most of the questions, and the replies from network members, will be added to the website as a growing resource for others (though sensitive or personal material will not be published). All items will be posted anonymously unless you specifically ask for your name/contact details to be added.

7. You can also post messages and comments direct to the website on any item on here, but you need to register for a reader account first, and then e-mail me (network@wellies.me.uk) when you've done so, so I can set the access permissions. For those who aren't so technically inclined, it may be simplest just to send them to me (network@wellies.me.uk) to forward to the network. And it's worth bearing in mind that you'll probably get more responses to a message that goes round by e-mail.

8. The site has a number of topic areas on the left-hand sidebar - please let me know if you think there's anything missing.

9. Get-Togethers: there are often get-togethers being arranged in the London area (see the Get Togethers topic area on the left-hand sidebar for details). We are looking at the possibility of setting them up in other parts of the country. Why not host one yourself? it generally just involves inviting people to join you for a cuppa in a cafe, though you're welcome to suggest something more adventurous.

10. Recovery Talks: this network grew out of a discussion at an event set up by the North London ME Network, where 4 people well on the road to recovery talked about their experiences. If your local support group would like to set up this type of event we can e-mail the network to see if anyone would be interested in speaking at it.

To get the ball rolling, why not send a question/issue to network@wellies.me.uk?

Anne-Marie, Wellies Network Co-Ordinator

The Geographic Cure?

I seem to have a fairly major relapse every year for the whole of April and

May, which makes it extremely hard to hold down my job and it's all a bit
miserable. And then when June arrives things generally improve quite
quickly. I'm fairly sure this is down to a tree pollen allergy, combined
with the noxious effects of living in London. Certainly when I had a
weekend away by the seaside this year I immediately felt much better.

So now I'm trying to plan for next year, instead of being blindsided by it
yet again. I've tried things like quercitin and homeopathic hayfever cures,
but nothing helps that much. So I'm wondering about trying to live
somewhere else, preferably with good sea air, for April and May. I may
need to spend at least a day or so in London each week (not least to manage
my staff at work) but if I'm having most of my time away from London at
least my battered immune system will get a chance to recover.

Has anyone tried living elsewhere for part of the year? Any practical tips
for dos and don'ts? Did it help, or was it really stressful being out of
your home environment? Any suggestions for how to do it fairly cheaply?

Voluntary Work offered in South London

hi

I am running an allotments group in south london and could really do with some typing done and filing dataprocessing. If you know about websites we need that upgrading.

You may be anywhere and it be far too far away ... but let me know if interested,

Helen

To contact Helen please e-mail network@wellies.me.uk and your e-mail will be forwarded

Any Wellies in Reading or nearby areas?

I'm a Wellie who has moved from Derbyshire to Reading to start an Msc at the university there and am looking to meet other recovering ME'ers in Reading or from nearby areas that are in easy bus or train ride from Reading. I'd also be interested if anyone organises a meet in Reading or parts of London that are easy to get to from Paddington.

Thanks
Jon Moore

To contact Jon please e-mail network@wellies.me.uk and your reply will be forwarded to him

Want to have your say about Chronic Fatigue Syndrome / M.E?

I have had CFS for 4 years and have worked hard to get better. Now I am improving I wish to pass on information about the strategies that I have used as I found very little available and have been asked to write a book for friends and families of sufferers that will help to explain the condition and suggest ways people can help their loved ones. It is for part of a series of books covering a variety of illnesses including cancer, depression and diabetes and will be on sale in major shops so will hopefully reach a lot of people.

I want to include a wide spectrum of experiences and produce something that is useful to anyone with CFS/ME so I am asking if anyone wants to contribute and have their say. More information and details of how to contribute are below.

Sincerely,
Elizabeth Turp

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Want to have your say about Chronic Fatigue Syndrome / M.E?

I am doing some research into what the friends and families of people with M.E. can do to help them. This will form part of a book being published by Manchester University Press to be sold in major shops, and has the aim of improving the quality of life of both sufferers and their loved ones. I have the condition myself and am now making a good recovery, and want to pass on the information I have learned.

As you will know, there are not many books available about M.E, and it is difficult to explain to others how it feels. The book will describe the physical, emotional and practical effects, and offer tips on what friends and family can do. As this is different for everyone I am hoping to gather a range of opinions and ideas so that readers can pick what fits their situation best.

If you would like to contribute your experience and expertise, please write as little or as much as what you wish about what you would like people to do (or would have liked them to do at different points in your illness) via email at: lizahturp@hotmail.co.uk.

Please include your name, age and severity of illness if you wish to.

Some of the areas the book will cover are: physical symptoms; emotional effects; social; financial; work; domestic; family; community; mobility; leisure; other medical conditions; lifestyle; relationships; treatment / management; self-help; sleep problems; pacing; nutrition; relaxation.

Thanking you in anticipation,
Elizabeth Turp.

Volunteering Opportunities - www.do-it.org.uk

There is a super website called www.do-it.org.uk which has loads of volunteering opportunities on it and is easy to use. Free too. I have used it several times.

Relocating

Does anyone have experience of relocating out of a city to recover? I'm
faced with yet another noisy Bristol flat and have to move again, so am
thinking maybe I should move nearer my parents in Dorset while I'm at it.
But there's less chance of a social life there/interesting voluntary work
for when I'm able. My social life has seriously dwindled since leaving work
about 18 months ago, and I find I'm actually relishing my old folks' company
because they're people who know me! But I do realise it's probably best not
to hang out with them too much and need to mix and mingle with new people
too. Can anyone share their experience of doing something similar (moving
to the country) and managing to keep the social side active?

Many thanks
Johanna