Fibromyalgia Action UK

Sick of life, people and family

I have been feeling really positive about my FM.

But after tonight it has completely gone!!!

On my Facebook tonight I asked for ideas on fund raising:-

What I didn't no is fund raising is a very bad idea, I have been told by my auntie and uncle that fund raising is a SCAM. Then my uncle goes and puts on his Facebook wall for everyone to see saying that 'Susan Gough s fund raising is a scam for her own means'. I lost it and told him to "shut the [ Edited by Admin to remove offensive word] up that he nos nothing about what I wanted to raise the money for and that his[ Edited by Admin to remove offensive word] ignorance shows that! So [ Edited by Admin to remove offensive word] off

I soon got a message off his wife my auntie to apologise or that's me and her through. I have apologised and now I feel like crap. Cause I can't do my dream :'( and I have spent the last hour crying.

So I have been told to save for the hand-cycle bike which will take me forever I only get £168.00 DLA.

I have had verbal abuse from my cousin, and I have been very lucky he hasn't done anything else like;-

Put my windows out

Hit me (waiting for that to happen).

I thought he can talk calling me:-

[ Edited by Admin to remove offensive word] creep

[ Edited by Admin to remove offensive word]


That I should respect my family

I'm a [ Edited by Admin to remove offensive word] disgrace

Which humoured me slightly coming from someone who gets done for drink driving and prosetion of a class A drug!

Though I'm very emotional as every time I have tried to speak to my sister and dad about how I'm feeling about my FM they say I'm just disabling myself but I can see me doing more for myself, physically and mentally. But I must be very wrong.

I have been house bound today as I was out yesterday and it looks like normal daily jobs are becoming to much for me. But no1 in my family understands that the last conversation I had with my auntie was:-

You r very lucky that's all u got official he is very defensive towards us and u weren't thinking when u stuck that on fb and it is a scam because if its not am putting one on for my extension l would love to have but know l can't ask people to fund it, (auntie)

It's not a scam really it's not!!

24 Replies

Oh my God that's so out of order. Would it still be possible/safe for you to do the fund raising without them knowing?

By fund raising you're also raising awareness of Fibromyalgia.

I rwally wish you lots of luck, I hope you get the funds and get the help and support from those that are supposed to be there for you.

Sending a big hug.

Becky x


My friend is going to see if her work can fund raise for me :)


I realise you have a really bad day but please try and remember to scale down the amount of swearing you use we know where you are coming from and you dont kneed to do it. I am afraid the site is quite strict on swearing.

Your fundraising need not be out of the window you either need to apply to a registered charity for help for example the Rotary sometimes give money to worthy causes who need help to live their lives normally.

Another way is through the church or indeed by contacting WRVS for help! These are just some suggestions but dont fall out with every one life for fibromites is hard enough with out battling with relatives. Stress increases our pain.

Has the hand cycle bike been prescribed or do you just want it? Surely is prescribed by health official they will help you get one.

If you need assistance get in touch xgins


Sorry for the swearing, my friend works for action on hearing loss and is going to contact them to see if they can help


As far as swearing goes I don't see the problem as it get bleeped out anyway! Jees like she doesn't have enough people telling her she's doing something wrong!!!

Your aunt and uncle sound awful. Try and look forward to the day you can move out and leave this lot and live with people who care about you and want to help.

Hang in there about the bike. If you can't get one yet then try something like swimming for exercise and use buses to get around.

Sorry if my post isn't helpful but it's important to believe in yourself and family are not always able to be kind or supportive. Just a fact of life. Good luck.

Xx J.

PS. There are lots of ways to do fundraising so if the bike dream doesn't happen right now, use your energy to find a network of people to help fullfill the dreams. Some things ESP important ones take time :-)



Hi did you mean to send me a message as I haven't received anything :) xx


I did - I don't know why it hasn't displayed :-(

It said - I despair :-(

I'm at a loss as to what to say to you - life is too short for regrets - don't lower yourself to the level of horrible people :-)

Take care :-)

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Ah right thanks :) no I'm not my sister had a go out them to for being so nasty :) I'm now in pain with my left leg :( xx


Thanks J!

I thought it was okay beeping it out, maybe some people on here are more sensitive then others :)

I showed my friend this website and she is going to see if she can't help with some fund raising.

I'm so tired from last night as I had a flare up off all of the things that were said, but after I removed my uncle from my Facebook I found out he put that is he not surprised my dad wanted me out the house, I did not see that but however my sister did and said that wasn't a nice thing to say and what do you expect me to reply with when you winde me up.

Going to seriously look into a wheelchair as I have just been volunteering and doing a simple task of clearing leaflets up caused severe pain in my back.

But I have 1 thing to look forward to and I'm slowly counting down the days for my holiday 6 days to go

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Six days, five days, four days, etc. wooo!! :-) xx


Yes until I go to turkey :) super excited xx


I genuinely think Facebook is a bad thing. Yes, I did join up once but immediately discovered I had virtually laid open access for them to my address book. There are no limits or manners there, and I think if you are already stressed out health-wise incidents such as that you've described will make things 10 times worse. Needless to say, I cancelled it double-quick.

I'm sorry for what happened to you, you didn't need or deserve that.



Hi thanks for your message.

Facebook isn't all bad as you can block some people access on parts of your profile. If you leave it wide open then yes people will see things that are private.

However I do use it to keep in contact with family members


I am so sorry you have so much to deal with. I dont have any family support other than my little granddaughter's mum. Dont take the bait...I know it's not easy and swearing gets it out of your system. Just quietly leave the room or end the phone call or online messaging. Say, 'I'm not going to argue with you. If you walked a mile in my shoes, then you might be more understanding'. I'm spiritual and it's taken me a long time to be patient and forgiving. Dont add to their negativity, Susan.

Love and hugs

From Barbara

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Hi Barbara,

Thanks :)

I'm also very spiritual and it contact with my mam and family all the time. :)


if i where you and wanted to do fun raising i would go to a registered charity and do it this way that way no one can say anything


Yeah that's what I'm doing thanks x


What a disgusting family you have!!! totally out of order to betray you like that and not be supportive of their so called loved one! utter hatred. I'd have nothing further to do with them if it was me. I feel sorry for you!


Yeah apparently I'm horrible. I'm not bothered xx


Every thing that has been said on the posts all I can say is I will send all the love I can to you . And to let you know that you are not o your own , I know a small bit of what you are going through and it is hard but we are all here for you

sending love <3 and soft hugs to you from us all be strong


Thanks Kath that means a lot




We have also,been turned down for all help to make life easier lol the bathroom has also been a major issue for me. We have just had to buy a walk in bath which was from eBay £450. Now the plumber has come and because the bath will sit 6 inches proud of the window sill we have to move a toilet etc meaning the cost is now going up and we have to find it. Life is tough but we have to save up now and we all have to find the money to make our life easier.

I know it's tough but Facebook can be unsuitable and leaves you open to negative comments which are hurtful to you.

There is a place I'm told were we can apply for a hardship grant or loan so might be worth trying the social services for more advice.

We have just had to buy a wheel,chair and got a great deal,on eBay so keep looking for things they might come along.

Hope you soon feel a little less angry it won't help your health.

Love Dianne x


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