I'm Going to Advise NHS Talk Together, anything you'd like me to add?

I've been part of a little pilot scheme for my local NHS TalkTogether team. I was prescribed CBT and the NHS Fisher Price Guide to mental health that they sent me was getting me nowhere. I needed help with pain management and fatigue, not advice like "wash your hair more often" (that's genuine advice from them by the way). But my telephone councellor just happened to be a chap who used to teach courses in coping with Fibromyagia. So instead of the Fisher Price Guide he switched me to the worksheets from his old job. It's really helped me. They are now rolling this out across their team and he's asked if I will come and talk to the staff about living with Fibromyagia and what they, as phone councellors can do to make the process easier, friendlier and on the right level.

I was wondering if anyone had anything they would like to tell them. What would you, as a Fibro suffer receiving support over the telephone, like from them?

xxx

7 Replies

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  • The Only thing I wish is that all NHS staff would know that Fibromyalgia is real and just because we have depression doesn't mean we are imagining we are ill and that the depression is because of pain, etc not the other way around.

    Sorry, having a very, very bad day today.

    Hugs

  • I second that Jilly its been a bug bear of mine for 20 years and its definitely past the time they understood it!!!

    {{{{{Jilly}}}}} fluffie cuddles for you my friend xx

  • Hi Jigwam

    Thank you for sharing this with us all, it is a very interesting post. I think I would like them to be more aware of what Fibromyalgia does to a person, it's symptoms and it's effect on the life of its sufferers. I find it difficult to believe that somebody who has never suffered the way we have can truly understand its complexities. Thank you for asking us!

    Take care

    Ken x

  • Well done jigwam! This could be an enormous help to fellow fibromites. I must second what Jilly says. For a year I had to fight GPs for a diagnosis, who all said I was fatigued & in pain because I was depressed. They couldn't understand that the constant pain, no energy and not being able to stay awake were making me feel useless, helpless and depressed. (Luckily I eventually got diagnosis & help and the depression very rarely raises its ugly head now).

    Thank you for sharing xxx

  • Morning Jigwam

    I agree with the other posts - support and understanding. No minimising of how we feel. I don't know about anybody else but one of the worst things for me about fibro is not being able to make any plans. I never know how I'm gonna be from one day to the next. Planning something in weeks ahead is really hard, even just meeting friends locally for lunch often has to be cancelled. It would be great to have somebody at the end of a phone who understood the impact of that. Cheers and thanks for 'involving' us. Take care. x

  • Thanks jigwam for asking :)

    Aswell as agreeing with 100% with Jilly I also get annoyed at the fact they don't understand how doings certain things such as..............

    ................being in a hurry for instance because we've slept in makes us ill, the stress we feel at the time in10fold because we don't wanna be late and be punished or penalised for it, which in turn leaves us too exhausted and fatigued to do whatever we were running late for in the first place. Then the fatigue grows stronger and the spasms and twitching start, pain and discomfort for a day or two afterwards.............I don't know about anyone else but no wonder we never fell ok :o

    I have used a vague example jigwam but hope you understand me !?!

    Fantastic opportunity thanks for sharing

    sending you warming, healing relaxing fluffies infused with extra energy :)

    :) xxxsianxxx :) Please let me know how it goes I'm interested to hear about it :) xx

  • I tried over the phone type counselling and it stressed me out more than anything. In the end i had to insist that i saw someone face to face.

    I'm sure that the service is a good idea for some.

    If would be good if we could all get the right help we need, we wouldn't need so many counsellors! No disrespect to any of them, I'm sue they, are mostly good ones :) xx

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