Family/Friends Nagging?

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Family/Friends Nagging?

Postby jackaddict » Mon Mar 17, 2014 12:58 am

Hi,
I have been lurking in the forum for some time now and have learned some useful information from everyone, but now I have a question. ..

I suffer with ME and Fibro and have been for about 5 years now. I was diagnosed last summer.
The problem I'm having now is everyone keeps trying to make me do things to cure me. For example, laser treatment, special diets and other weird things that are not scientifically proven to help. I really want to be left to my pacing because I know that is all that really helps. Has anyone else experienced this, if so, what did you do?
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Re: Family/Friends Nagging?

Postby Jeany » Mon Mar 17, 2014 9:44 am

Different things work for different people, and we all find our own way. We do need to be open to different things that may help yes, but at the end of the day it is us that knows our own bodies, and what helps and makes us feel better.

It's funny how friends and family think they are experts on these illnesses when the medical professional are still struggling to understand them.

You look after yourself love x x x
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Re: Family/Friends Nagging?

Postby Itsnotinmyhead » Mon Mar 17, 2014 12:29 pm

Hi Jackaddict

Try and be confident in going at your own pace. You have been dealing with this for over five years and I bet still don't know what to do for the best at times. So long as you try and stay positive, find a reason to smile, and hopefully laugh, every day, listen to your body and do what you can when you can and rest when you can't, your body will be more thankful than being bombarded with different things.

Often people want to help, but when there is nothing they can do, they go into overdrive with options and ideas so they feel like they are doing something.

Keep an open mind. If something sounds like its worth a try, your gut instinct will tell you to give it a go. Mostly look after and be gentle with yourself.
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: Family/Friends Nagging?

Postby Charmed » Mon Mar 17, 2014 3:00 pm

Hi Jackaddict,

I was lurking for some time too and yes the information on here is fabulous. Just listening to others and knowing we are all in the same boat seems to help.

I've had people telling me to try this n that, I told them to read this forum so they could understand our lives on a daily basis. I think some poems really nail how we feel, so are good to print off for them. The spoon theory is an excellent way to describe the fatigue.

I find pacing, by listening to my body is the only thing that works for me. Although sometimes I don't :nono: listen and I end up like I am today :bricks:

Cancelled my appointments and my diet [chocolate] for the day. So having a pj day on the couch. It's not ideal, but tomorrows another day xx
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Re: Family/Friends Nagging?

Postby jackaddict » Mon Mar 17, 2014 4:00 pm

Thanks for the replies. :)

One of the problems I face is one of my family friends owns a medical laser company and because of me, has been doing research in to laser treatment for ME and Fibro. I know it helps some people but she keeps handing me diet sheets, links to things that have been dismissed as hokum and I feel bad telling her I know it won't work. I've already lost friends due to an argument over my health. They were convinced my issue was Candida and would not let it drop. This was before my diagnosis. When I told her I was waiting for my doctor, I was rudely informed I wasn't trying hard enough and name calling started. I walked out and never returned.
I don't want a repeat of this scenario so I'm at a loss of what to do.
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Re: Family/Friends Nagging?

Postby littlemac0191 » Mon Mar 17, 2014 4:37 pm

When I was working I was assigned a health nurse through private medical and every month she couldnt understand why I wasnt any better and according to her there was a cure for fibro, she shold know as she was in that field of expertise. she never did tell me how to CURE myself but did suggest I hadnt tried everything to get beter and had I not tried hypnotherapy. That was the last straw I refused to talk to her after that. I list of places I have sought medical treatment is really long, also alternative therapies, even went to see a physchlogist at works suggestion. I was finished from work nearly two years ago because I wasnt well enough to return and was denied medical retirement as they said I hadnt been diagnosed with fibro very long and hadnt tried every avenue to get well from a temporary illness !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Wouldnt have their pension for a million pounds, thanks very much. Feel much better getting that off my chest lol
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Re: Family/Friends Nagging?

Postby SchroedingersCat » Mon Mar 17, 2014 4:59 pm

Temporary illness? Good grief. I blo**dy wish it was temporary, I've been trying to get rid of it for ages, as has everyone else here. First person that EVER tells ME it's all in my head, or that I'm not trying hard enough, or it's temporary, is likely to find out just how much of a punch I still pack despite the muscle loss from fibro.
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Re: Family/Friends Nagging?

Postby FluppyPuffy » Mon Mar 17, 2014 8:44 pm

If this is temporary, then 14 years is a heck of a long time for it to be lurking around, as that's how long I've been temporarily incapacitated :swear1: :swear1: :swear1: :swear1:

jackaddict wrote:One of the problems I face is one of my family friends owns a medical laser company and because of me, has been doing research in to laser treatment for ME and Fibro.

What is the name of this company??? If you don't want to post it on the board, you can send me a private message if you like.
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