Forum posts to 'Forums'

Skype meetings?

Jay — Sat, 31 Mar 2012 16:50:31 +0100

I was chatting today with Amy about perhaps getting involved with the committee, but given that meetings are involved that won't work for me. As we chatted, however, I suggested that some of our socials and/or some of the committee meetings be held using Skype which is free and has a conference call function.

I appreciate that wouldn't work for those of us who struggle using computers, but it would be an added option for those like myself who long for more contact with other people who have M.E., but can't handle the physical meetings (much as I'd love to be able to).

What do folks think?

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

CL — Fri, 16 Mar 2012 09:56:23 +0000

Hi Sarah
I enjoyed reading your comments just now and realise that doing this reading group online makes the discussion rather unusual because of the time lapse. You have brought up points that really resonate with me, but which I didn't notice properly at the time - namely my irritation with the relationship between the older man and young girl. I feel you put your finger on it .... it was very 60's, amazingly idealised, very pre-feminism. It reminded me of all the stereotypes I'd fought against in the 70's.

Other parts of the story have escaped me entirely. I can't at all remember what the connection was between the two stories and that feels like a word on the tip of my tongue - its a memory that I really want to retrieve. Mostly because I had guessed it when I was reading the story and found the connection very satisfying.

Anyway - does anyone fancy the idea of starting another book? I bought the Jeanette Winterson 'Why be happy when you could be normal?' What a title! It may be hard to live up to ......

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

Sarah — Thu, 15 Mar 2012 18:19:01 +0000

There are two stories in this book, and until right at the end it is hard to see what connection there can possibly be between them. I found that rather irritating, as as soon as I got into one story she would switch to the other. Actually I found the somewhat idealised love affair between the young woman and the older man in the sports car very irritating for quite some time! It felt very 60's, which it was of course!
I agree the story about the woman who has given just given birth and feels so peculiar was much the most interesting. The way that she couldn't remember what had happened, and felt in terrible pain but didn't ask anyone to help her was incredibly moving. I could have read a whole book about her.
When the two stories came together at the end it was very moving, but it took rather too long to get there for me.

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Acupuncture talk this Saturday - Lancaster

AdminJo — Fri, 02 Mar 2012 09:54:50 +0000

Just a quick reminder that Andreas Feyler from Dacrelands Clinic is coming to give us a talk this Saturday 3rd March at the Friend's Meeting House - 2pm.
Jo

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Depression

Rachel — Tue, 21 Feb 2012 21:27:28 +0000

Does any one else suffer from depression cause of their CFS/ME? Does anyone have problems with the side affects of their antidepressants?
I struggling on mine at the moment. My dr makes sure I increase very slowly and no on top dose I feel better on it depression wise but struggling with the side affects which is annoying. Got another tablet to help with the side affects but not helped. So now have to go back to dr to see what dr can do annoyingly.
Sorry just moaning and ranting really.
X x

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diets

Rachel — Tue, 21 Feb 2012 21:17:47 +0000

I have gone down the nutrition route to see if it helps me. I've been on a wheat, gluten, dairy and egg free diet now for over a year and taking supplements. How do you really know it is helping or if you are very slowly hopefully improving or your doing ok by other things things?
Is anyone else trying diets and supplements to see if it helps?
Thanks
Rachel

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Re: Voices from the Shadows DVD

BaskingLizard — Tue, 14 Feb 2012 11:11:29 +0000

Thanks, Amy.

Thanks for recommending 'I Remember Me' on youtube too. Planning to watch some of it today

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Re: Voices from the Shadows DVD

Rachel — Mon, 13 Feb 2012 17:30:16 +0000

Amy
Who do we need to let know if we want to view it at home? Would also be good to watch together if can.
I hope health prossions know about it to watch.
Rachel

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Re: Voices from the Shadows DVD

Wilma — Mon, 13 Feb 2012 17:23:08 +0000

Hi both,
I recently watched the dvd which we've now got for the group...it is indeed very sad. It concentrates on people who are bedbound and to me seems like an extremely important documentary for health professionals to see. I think in order to show it at the Gregson Cinema we have to get the more expensive version (25 pounds i think) which we can certainly put before the committee meeting next week. The other version can be lent out to private individuals though so I'll pass it on to Jo to send out to people.
There's a good American documentary which I've watched on You Tube called "I remember me" too, which i'm not sure if we can get hold of or not...will look into it...
Amy x

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recipe sharing

Wilma — Tue, 07 Feb 2012 20:20:13 +0000

Hi All,
I asked Jo to put this thread on here so that we can share recipes that are stomach friendly, especially for those of us on special diets...I'm not on one at the mo, but over the years, with much trial and error I've found a few nice as well as free from wheat, yeast, sugar etc etc recipes....
I'll kick off (as soon as I can find the book) with a recipe from The Whale Tail (in Lancaster) for a very tasty vegi pate....
Please feel free to share any recipes too,
Amy

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Re: Acceptance

Wilma — Mon, 06 Feb 2012 13:04:51 +0000

Aww, thanks for your kind words, Rachel. hmmm, being kind to yourself doesn't always come easily does it? I can't believe after all this time i somehow think it's my fault, and it's my responsibility to "get myself better". But I'm working on letting go of this not-very-helpful way of thinking.

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Re: Acceptance

Rachel — Sun, 05 Feb 2012 12:15:33 +0000

Acceptance is hard, and i find it comes and goes. Its about being happy in what you can do, rather thinking about what you could do, realising how far you have come with the illness, not over planning your time as its going to set you up just to fail, having support around you helps. I do find after a while I fight all this as I get fed up with it all, but to realise it does help me. Having people to talk to for support on bad days.
I think over all its being good to yourself.
Always here if you need to chat
Hugs x x

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Re: Whole Woman

Wilma — Sat, 04 Feb 2012 18:33:32 +0000

Hiya Basking Lizard (love that name!)
I will look out for the book Whole Woman. I tried to read The Female Eunuch a couple of years ago, but to be honest, I found the language and some of the concepts were so old fashioned that it put me off finishing it. I like Germaine Greer as a person (having seen her on tv a few times-though why did she have to do Big Brother?!) and find her interesting so want to read more of her stuff. Cheers for the recommendation!
Amy

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Re: Voices from the Shadows DVD

BaskingLizard — Sat, 04 Feb 2012 17:57:36 +0000

Hi all

I emailed Jo about it, so it might be an idea if you two email or call her too to show that we're interested in seeing it. It's quite a tearjerker, I've heard.

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Re: Voices from the Shadows DVD

Rachel — Sat, 04 Feb 2012 17:36:43 +0000

I've don't know of anyone who's watch it but suppose to be good. I would love to see the dvd either as a group or borrow a copy to watch at home

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Re: Voices from the Shadows DVD

Wilma — Sat, 04 Feb 2012 17:25:01 +0000

Hiya
I've just ordered the dvd for home use for the group. Has anyone seen it yet? I think it's a good idea to get it to show at the Gregson sometime. I think we have to pay something like 25 quid for a special dvd with public viewing rights-but that should be fine go get it if we think it's a good one and there's enough interest.
Amy

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Acceptance

Wilma — Sat, 04 Feb 2012 17:17:16 +0000

Hi All,
Well, I've just arrived at the 10 year point of living with this illness, and realise that i have spent alot of time and energy over the years trying very hard (too hard?) to get better. So, I wanted to give my brain-and my pocket- a rest, and start trying to accept my condition. What I wanted to ask was, how do you accept being ill? Is it a process? I don't want to spend all my time fighting against "what is" anymore. I have skim read a book called "Loving what is", but wanted to kill the author by the end! Any non homicide inducing ideas out there?!
Amy

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Re: Pacing

Wilma — Sat, 04 Feb 2012 17:10:38 +0000

Hi Cazzy,
My fella who has ME too has just started the NHS "pragmatic rehabilitation" treatment at the Queen Victoria Hospital in Morecambe and they gave him a couple of good booklets on pacing. Also, Action for ME will have info on it that you could print out or ask them to send you.
We're hoping to run a "Tools for living with ME" course through the group in April, and will have a couple of sessions on pacing in there too. Hope that's of some use!
Best wishes
Amy

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Re: Hi

Jan — Mon, 30 Jan 2012 15:32:59 +0000

I'm looking forward to going to some socials (saving my pennies up to go) as I don't get out very much these days.
Talking with people that live with this illness will be so refreshing...no having to explain myself
Hopefully I'll see you there soon

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Re: Hi

Rachel — Mon, 30 Jan 2012 15:20:54 +0000

Hope to see you at some of the socials and at the kendal cafe socials soon. Always here if you need to chat and you can find great support from this group

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Re: Hi

Jan — Mon, 30 Jan 2012 15:16:07 +0000

Hi Rachel, thank you

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Re: Hi

Rachel — Mon, 30 Jan 2012 15:10:51 +0000

Welcome

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Re: Hi

Jan — Mon, 30 Jan 2012 15:04:50 +0000

Hi everyone
My name is Janice & I'm from 'sunny' Kendal.

I'm so pleased to find a local group at last, & looking forward to chatting with you all

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Non-fiction

BaskingLizard — Fri, 27 Jan 2012 12:31:53 +0000

Does anyone else find reading non-fiction easier than reading fiction?

I think it's to do with following a plot with many characters and because a lot of us have working and short term memory problems, this can be problematic.

I think I have a preference for non-fiction now and enjoy books on politics, health and feminist issues. Any suggestions for a good introduction to other areas of non-fiction would be welcome.

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Re: Voices from the Shadows DVD

Rachel — Fri, 27 Jan 2012 12:28:01 +0000

Oh ok. That would be good suggesting it to her to get for next time.

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Whole Woman

BaskingLizard — Fri, 27 Jan 2012 12:26:00 +0000

I'm not sure if this section is to discuss books we are reading that are not the selected books but I thought I'd just say a few words about a book I am enjoying.

I'm reading Whole Woman by Germaine Greer. Some of you may groan and she's not everybody's cup of tea but I think all women should read at least one good book on feminist thinking before they judge.

So far, I have found it to be the sort of book where you keep nodding in agreement. In fact, I want to shout, yes, fairly frequently. I just wish this message came out of the mainstream more often but it's like the subjects are taboo. You get brief discussions in debates but they're frequently portrayed as 'feminist' or 'alternative' when really, they are valid points to be made about women (and men) in society.

Anyway, I haven't got very far as reading for any length of time isn't easy and has a knock on effect but I'd like to hear from anyone who's read any other books on women's issue's.

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Re: Pacing

BaskingLizard — Fri, 27 Jan 2012 12:14:06 +0000

There might be something in the group's library. I'm not sure who runs the library now but contact Jo, the coordinator and she should point you in the right direction.

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Re: Voices from the Shadows DVD

BaskingLizard — Fri, 27 Jan 2012 12:10:18 +0000

Hi Rachel
It's out now, I think and it's not too expensive as it's meant to be given out to health professionals and people who don't know what ME is. There's isn't enough time to get the dvd for the MBMEG cinema day as it's on 4th Feb but maybe for the next one. Will suggest it to Jo.

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Re: Pacing

Rachel — Fri, 27 Jan 2012 11:29:13 +0000

The only material i have for pacing is what i have recently got off my CFS specialist. Have you seen the CFS specialist?

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Re: Voices from the Shadows DVD

Rachel — Fri, 27 Jan 2012 11:16:42 +0000

I agree it looks like a good idea to watch this, will it be out in time for our next visit to gregson cinema?

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Pacing

Cazzy — Sun, 15 Jan 2012 15:29:29 +0000

Has anyone got any good materials on pacing or where I can get hold of some. I want to get a physical copy of something rather than searching online as I find reading online a bit hard.

Thanks

Cazzy

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Voices from the Shadows DVD

BaskingLizard — Sun, 15 Jan 2012 13:08:50 +0000

When this is available, it might be a good idea to arrange a screening at the Gregson or somewhere similar for one of the MBMEG meetings or cinema night:

http://voicesfromtheshadowsfilm.co.uk/

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Re: Food Hospital on ME

Rachel — Fri, 13 Jan 2012 10:37:44 +0000

In my opinion to suddlendly get better by eating properly she most not really got it, which makes then all people with ME can get better eating regular meals which isnt true, eating regularly helping everyone function in life!

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Food Hospital on ME

CL — Wed, 14 Dec 2011 10:38:16 +0000

Did anyone else see this item on telly last night. I was thoroughly disappointed. And concerned a bit about how little time was given.

What did people think?

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

Jay — Tue, 13 Dec 2011 16:06:08 +0000

Same for me. I nearly gave up back near the beginning, but then was really glad I stuck with it. Only problem now is, I've fogotton it (I read a lot of books), so I'll have to refresh my memory if we ever get to a point of discussing it.

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

CL — Tue, 13 Dec 2011 12:49:07 +0000

Thanks Jay, let's see what happens.

Well, I have now read this book and have enjoyed it. Though the enjoyment was a little bit patchy. There were parts where I got pretty bored and wanted to skip bits. Was glad I didn't as I would have lost some important snippets of information/clues about the emerging story.

Towards the end I couldn't read it fast enough ...

I am hoping that someone else is busy doing the same so we can have a natter. I don't want to say too much in case I spoil the story for others

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Re: A poem

Wilma — Mon, 05 Dec 2011 12:53:50 +0000

Thanks for sharing your poem, Jay. I think we can all relate to what you've written. Will try to find the poem I wrote ages ago (believe me, I'm no Shakespeare!) to put on here too x

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

Jay — Fri, 02 Dec 2011 19:41:51 +0000

Hi Chira,

Erm, no, unfortunately ... I completely forgot. I'll try to remember next time I'm at the local library in Halton.

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Re: Hi

Jay — Fri, 02 Dec 2011 19:38:46 +0000

Happy Birthday, Chira \o/

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Re: A poem

Jay — Fri, 02 Dec 2011 19:37:39 +0000

Thanks, CL. Look forward to reading yours

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Re: Maggie O'Farrell, 'The Hand which first held Mine'

CL — Fri, 02 Dec 2011 12:45:27 +0000

Hi - this is Chira, just checking in to the reading group, to say hello to Jay and anyone else who has a look.

I have started reading the Maggie O'Farrell book, and am finding some things in it that I really love .... like the descriptions of the character who is drifting around her home in a state of tiredness and confusion. It rings a lot of bells.

I bought the book on amazon, second hand for about £2. There is a possibility that, as we get going as a group, we can use an online audio book service called 'Listening books'. We need to see whether the demand is there for people who find it hard to read, as I do usually.

The same could apply to the library as you suggest Jay. I am not sure about the range or availability of books that they have on offer. Did you manage to find out?

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Re: Hi

Rachel — Fri, 02 Dec 2011 12:23:19 +0000

Happy birthday Chira, have a great day, hope you are able to have a few drinks tonight

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Re: Hi

CL — Fri, 02 Dec 2011 12:15:38 +0000

I am Chira, but have put CL as my name on here - don't know why and wish I had thought of something more original.

I live in Lancaster and am hoping that the virtual reading group we have started may soon be buzzing ... if you are interested in joining in, do please whizz over to the reading group page where I am at last going to post

(I don't know why I am using such energetic words ... maybe I am a bit excited it's my birthday today and I am still in bed in the hope that I may be well enough to enjoy a few drinks tonight!!!!!!!!!!!!!!)

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Re: A poem

CL — Fri, 02 Dec 2011 11:57:22 +0000

Thank you ..... your poem is very moving Jay. And it doesn't look like you have lost your touch!

I was struck by the poetry in the newsletter too. Reminds me we did some writing about this in the writing group the other week, looking at who we used to be and who we are now. Sad stuff but very good to share. I might dig mine out, try and turn it into a poem then type it out for this forum

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Re: Hi

laylah — Tue, 29 Nov 2011 00:36:12 +0000

Hi, Paula here

I don't live in the Morecambe area yet, but I'm getting my housing application together. Don't hold your breath 'til I join you there though - I have severe chemical sensitivity so meeting my housing needs is like - well, finding the proverbial needle in a haystack (lol). But nothing venture, nothing gain. Meanwhile hope to get to know some of you and share with you any useful snippets of information I've gleaned along the way.

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A poem

Jay — Fri, 25 Nov 2011 16:02:37 +0000

Well, writing poems certainly can't be considered a hobby for me given that I last wrote one in my teens. Until, that is, I was inspired by the poems in this month's newsletter to try one about M.E. and me. Here it is:

Hello M.E.

Vibrant, charming, intelligent.
Extremely fit, goes to the gymn every day,
you know.
Dresses with style, always something unique.
Doesn’t look her age;
at least ten years younger.
Competent, confident, charismatic.
Very well-organised. Independent to a
T.
Loves to walk, talk, dance, cycle, swim, work-out.

These are the things they used to say,
before.
And now?
They don’t say anything much, but I can see
in their eyes,
and in my mirror,
and I know in my heart,
that much of that is lost.

Now people don’t recognise me,
walk right by without a glance.
Looking ten years older, these days.
Clothes boring and easy-wear.
Mind grinding to a halt, permanently
fogged, befuddled.
No more work-outs, no more swims,
no more dancing.

Goodbye to charisma, intellect and
youthful looks.
Goodbye vibrancy, fierce independence,
organised life.
Goodbye to most of the things that
made me me,
Hello M.E.

Feel free to move to another part of the forum if there's one which is more appropriate.

Maybe other people will be inspired and share their poetry/writing here?

Regards,
Jay

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Maggie O'Farrell, 'The Hand which first held Mine'

Jay — Thu, 24 Nov 2011 19:23:23 +0000

Hi,

This is the book Chira and I have chosen as our first book for the book club. Well, Chira chose it, and I agreed

The idea is that anyone interested will get a copy, maybe from the library, and we'll read it, then discuss here on the forum.

Actually, it occurs to me that we might be able to register with the library as a book club, and then they can provide the books for us. I'll talk to my local librarian about this possibility, and how it might work.

Happy Reading!

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Re: Hi

Jay — Thu, 24 Nov 2011 19:07:42 +0000

Hi everyone,

I'm, Jay. I live in Halton, near Lancaster, am an active member of the facebook group, and made it to one social in Lancaster. Also tried to start a social group in Halton, but organising it proved beyond my capabilities at the moment.

Feeling very inspired just now by the poetry in the recent round robin, and want to try doing a poem of my own (first time since a teenager).

Very stressed at present because my DLA review resulted in a decision which completely disallowed both rates, so I'm drafting a letter of disagreement with the decision. Hate all that because it makes me feel very overwhelmed by my illnesses (M.E., chronic anxiety and depression, IBS, and Asperger's - that last three pre-dating the M.E.).

Anyhow, pleased that there is a forum and looking forward to interacting with more group members here.

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Re: Hi

Rachel — Thu, 24 Nov 2011 10:40:05 +0000

Hi
I'm Rachel, I live in Natland.
I think this forum is a great idea.
x

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Re: Hi

Wilma — Wed, 26 Oct 2011 22:01:59 +0100

Hello,
I'm Amy (under my school nickname of Wilma-took the nickname thing a bit literally!) I'm on the committee for the ME group and live in Lancaster. I hope this will be a great place to share things, both good (is there anything good?!) and bad about living with ME, and about life in general. Since so many of us don't get out that often I think it will be really useful.
Hope to see you soon on here!
Amy

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