Is there a designated group anywhere for rela... - Pain Concern

Pain Concern
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Is there a designated group anywhere for relatives of Chronic Pain sufferers?

Bananas5
Bananas5
16 Replies

Anyone who lives with and or cares for a chronic pain sufferer knows just how hard it can be. There are carers groups and foruns for all sorts of disabilities but I am looking for this specific group.

Pat x

16 Replies
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Hi Paton, I don't know of any. Not much of an answer, but at least a reply. Great idea though. Only my elderly terminal mother realises just how much pain I'm in, don't think my siblings and son actually understand the trauma we go through.

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Bananas5

Thanks for taking the time - as I thought.

Went to my then GP about 10 years ago cos I couldn't cope. She put me on 'happy pills' and sent me to a psychiatrist. Not the help I needed.

Lovely young chap and we spent 5 weeks chatting. At the end he thanked me as I had taught him so much!

So a positive resut but for the wrong person.

Pat x

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julie99

Hi. I think you are right in wanting such a specific group-to educate the "non-believers in pain" and support those who understand and empathise but, like all carers, need support for themselves. If one doesn't exist, would you be well enough to set one up? I don't

know how you would do it, but the admin here may be able to guide you. Or ask any other forum, perhaps? I wish I was well enough to help you because I think it would be

so helpful. :)

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Bananas5
Bananas5
in reply to julie99

Always well just can't see!

I did find a sort of group for familes etc but no input from them.

It is all aspects of livinf, caring when needed and helping a chronic pain sufferer. From not telling themm to 'pull themselves together' when they are depressed to coping with verbal abise when they are in so much pain.

Happy to start one if you think it could help but clueless as to how!

I can ask myy team if you could find someone who may know how to set one up.

Thanks

pat x

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julie99

Hi Pat. I've just Googled "setting up a forum" and there is lots guidance......and for free ones. You said "just can't see" so I don't know how you deal with Google. I'm afraid I can't look into it further for you-my vertigo is already starting up having looked at the screen so much already! Perhaps someone else on here can investigate further for you? Best of luck :) Julie xx

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Bananas5

Oh I have a wonderful talking computer lovingly known as 'Jane'!

See what i can find but would always appreciate advice or help from sighted members.

Where there's a will there's a way.

pat x

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superannie

Hi I subscribe to the Yours magazine which is published every two weeks and is on sale in the shops. There is a group called Carers in Touch that they run and reading the articles, looks to be very popular. Have you tried going on your local council website? Just been re reading your post and I think some magazines are available in audio form? Good luck, Ann

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Bananas5

Thanks Anne

Carers In Touch sounds like blind people?

I avoid them!

It was just an idea for those of us who live with chronic pain sufferers to swap help. I am involved with Carers UK and Carerwatch but wanted something unique to us.

Certainly I will find out about your magazine but mostly I can manage better with 'Jane'.

Pat x

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Hidden
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Hello

Bob here

I suppose if you are over the golden age you can trot along to AGE CONCERN, they have daily groups. You can use the WRVS bus to pick you up and drop you off.

Some of the councils have day groups as well.

One of the things that is now more possible is an alarm that councils used it works on your telephone line you have a responder around your neck. Also councils here put a key lock on your front door so they can get in if there is an incident One of the ways they did it in the past was meals on wheels that used to check what was going on, sadly this now does not happen.

Now I suppose we will have too sell up and go into flats for the aged, where help is avaIable on a daily basis, some of these take in people that are younger than 60.

So there are ways, would you want to take them

BOB

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Bananas5

Sorry I don't understand your answer!I am well under the golden age as is my husband.

I am looking for a way to bring together carers and relatives of chronic pain sufferers. the thought of sitting in a day centre was not what I had in mind.

A group, on line or forum all with the same common cause. There are many special groups for cncer, MS, blind people but not those who care for someone with CP.

Thanks for suggestions anyway. No one is going to put my husband in any care home - not while I'm around. Just very hard at imes as it is for any carer.

Pat x

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pinknosedcat

I just want to say I think you are very enlightened asking for help. My partner and carer thinks he can cope with it all himself despite my encouragement to find support. What you are doing is great and makes me think there needs to be some sort of nationwide coordinated chronic pain advisory centre, for sufferers, carers and any interested observer. Now there's a thought...

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welshnut

Hi Pat

We have local carers support groups but nothing specially for cp........ lol cp also stands for corporal punishment I found out quite by accident in a cross purpose conversation but that is for another post.

I think you have to keep looking and maybe ask the pain clinic to put a poster asking if other carers would like to arrange an informal coffee morning or chat. Failing that you have us...... daunting I know but we are here and always willing to give you a boost when you need it.

nutty

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Hidden
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Hi Paton,

Not sure if you're still interested, however, we have set up Pain Concern Carer Community, a forum for young people aged 16-25 who care for family or friends with chronic pain. The forum is also for people who were young carers. Please visit our webiste for more information about the forum painconcern.org.uk/how-we-h...

Please get in touch if you have any questions.

Pain Concern.

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Bananas5

Thanks for this but I am a wee bit too old! Would be interested but no experience of being a young carer.

Pat x

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louiseamos
louiseamos
in reply to Bananas5

Paton..no there's carers for adults .....there OK.depending were live..trips..meetings..chat groups etc..oh best bit do like treats for lady's massage stuff at nice places ..depends were live..and stuff..has its charity thing..my lass GOS young carers.. Its stopped were was has running out of money..I went volunteer ing packing bags at super market..?for young ones ..was hard work..packing bags all day..but did it..has they been good with my lass.go in school to talk to heror go for coffee...?

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chairbasedIns1

It is worth getting in touch with your local Carers Assn or centre who could point you in the right direction or carersuk.org They have a national helpline 0808 808 7777 which I think is 10am to 4pm, also. Often it helps to talk to unpaid Carers like yourself who have some points in common, if not exactly the same thing.

Bridget

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