I'm Susanna, and my mum is Ellie - Ellie10 on here, some of you have already spoken to her and she's really appreciative of the advice and kind words she's received on here so first off I'd like to say thanks to everyone for that.
I'm just wondering what I can do to help her out. I don't have fibromyalgia, but I myself suffer from depression which has only gotten worse since she got her diagnosis. It's pretty shameful to admit and I'm annoyed at myself for the way I've reacted - a pretty childish denial that anything's wrong, really, 'cause my mum has always been the strong one in our family, the glue that keeps us all together and I find myself terrified of the idea that that's going to change.
I can't seem to find any information online about things I can do to help her, other than things relating to her pain which she already has covered, and it isn't easy for her to ask for help sometimes, as I said, she was always the strong one, the supermum, who done everything and never asked for help... I just want to know things I can do for her to make her life a bit easier and relieve her stress. Any help would be really appreciated, guys, thanks.
Hi Suzzanna , Iam 56 and my son is 30 and he as never seen me poorly and then the last 6 months with fibro as been awfull for me , he just cant believe his mum as all these pains and e blocks it out , I suppose thats his way of copng . It would be nice however if i got a cuddle from him now and again . My hubby however is the oppisite and his so understanding and supportive and even comes on gp visits when he can . It must be hard for you as well but just give mum a hug and tell her you are there for her xxx
Thanks so much for this, it's really helpful. It's hard a lot of the time because mum has always been really on top of things and she used to be almost... offended if someone else done the work. So it kind of just got to a point where it was just her. Now, obviously, that can't happen. I want to be there for her and help her without her feeling like I'm taking over, haha. This was really helpful, thanks so much.
the best way to help your mum is just hug her softly and tell her you love her strength!! stress is a major factor for me and i always find it so overwelming when i come back from doctors to find him cleaning. he's 17, and he asks me how im doing.Just knowing you want to help her is wonderful but sometimes words are the most effective.
same here,Im 55 never been ill until this hit, Susanna just be there when your mum needs you, even if its only for a cuddle, she may like fine and can do things one day and then not the next, she s not pretending, thats the nature of this illness,My 13 yr old daughter is my carer she s had her assesment by both social services and barnardos, that may be something you might try yourself,its a very hard illness to understand , even we dont understand it
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Thanks so much for this good answer. It's a hard thing to deal with, like you say, cause it's hard to understand. Sounds like you have a really great daughter, I hope I can be like her too. She's an inspiration, especially since she's five years younger than me, haha! Thanks again xx
we laugh together we find humour helps us, when I forget names for things, when I fall over, shes got a wicked sense of homour, one thing though dont forget yourself, talking to other carers my help. Olivias going away for 3 days with barnardos in august with other young carers to give her a break, and give her time to talk about what a pain I am[lol]
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Yeah, my mum and I have a really good laugh together most of the time (except lately, cause I've been a pain in the bum, haha). She sounds really great, that's some good advice, thanks so much. (: xx
your 18 your entitled to be a pain in the bum, theyd be some thing wrong if you werent, your mum must be very proud of you , you sound like a brilliant daughter, youve taken the time to find out how to help her, but please dont forget about yourself, you need to nurture yourself, to continue to help your mum, good luck to you both xxxx
Hi susanna, Ellie10(mum) here, thanks for this, i love you very much and as Lally said i am very proud of you, the best thing you could do to help me is live your life and stop worrying about me. love Ellie10(mum) p.s if you could tidy your room some time soon would be nice too LOL
I'll never stop worrying bout ya, just like you wont stop worrying 'bout me. Love you too Hope you enjoy the dinner I'm buying us because I'm totally the bestest daughter in the whole world... lol! xxx
and clean your room [lol] now if only I could get my 2 daughters and 2 sons to do that theyd be perfect
wow, it is lovely to read this post. I am 20 myself and I am so scared of when I have children how will I cope, will my children be helpful or turn a blind eye. my sister who is 2 years younger than me has helped a lot over the years, I was always the one to be doing more, and my mum moved out for a short period and i took over. but when i was 16 I had a flare up and ever since I've needed a lot more help. my advice would be try to make her feel as normal as possible, my friends are great at this but not my boyfriend lol. tell her she's beautiful or suggest doing her hair or things like that so she feels she can still look after her appearance, maybe its just me but that to me is when i can tell the difference between me and normal.people, I'm the one with wet left to so what it wants hair. as well as everything which is suggested, taking some slack. but speak to her, knowigg you care with really help.
I'm sure you don't need to worry about how any future children will react to your fibro. I think if they grow up with it, it will be easier for them, as they will know much better how to cope with it. For older kids, like me, it's witnessing a big change in a parent and then learning how to deal with that. Thanks so much for your advice, I really appreciate it (: xx
Hey Penny, thanks for your reply. Dinner was lovely, hehe (: I've read a few books on fibro now, and looked into it a LOT online, haha. Research and finding information is one thing I am good at, lol.
Thanks so much for your message again. (: xx
Hi Susanna,
I was getting a bit misty reading your thread I'm a very young, fit 42 year old project manager in telecoms, ex Royal Marine and generally like living life full thottle, with a 20 year old daughter and an 18 year old son.... oh hang on.. the second part is right about my kids but the first bit should now read "42 year old absent from his job for about 10 months now, very depressed, trying to get the balance of meds right still, have complications with bad neck (putting it mildly) and struggle to look after myself without the help from my partner, can no longer drive my Lotus so had to buy something really comfy so that I can get about (on days I can drive anyways).... I'm not bleating (today lol) but I just wanted to tell you that the support and encouragement I get from my daughter can make the difference of whether my chin is above my shoulders or not! She lives about 45 mins away now as she is at uni, but you know what... just a phone call or even just a quick visit in between the times we have more time, really cheer me up
I guess my message to you would be to remember that EVERY little that you do helps. I would thoroughly recommend googling "spoon theory" as that is a great way to help others (it helped me to explain things to peeps too) understand exactly what it is like managing this condition... another one to Look up is "Letter to Normals" on Fibro Action... there are lots of great things on there to help, not just you, but your mum too.
One more thing: you will find that a lot, if not most, FMS sufferers are the type of go-getting, high-energy, enabling/helping others all the time peeps just like your mum sounds. I say this as one of those types because...and here comes the rub.... letting go of that lifestyle is sooo tough mentally... I mean your mind doesn't stop thinking the same way immediately. I am still grappling with myself to find some way of gaining acceptance... only once you have that can you really start to improve yourself by managing your condition better.
Sorry this turned out to be a bit of an essay... one way I help myself, especially in the morning when I'm such a veg from the drugs for at least a couple of hours, is to go through my email and see if there is anything I have gleaned from my own personal experience and research into FMS that might help others with their questions. At least that way I can still be a little bit helpful/useful
Take good care of yourself and I hope your mum finds it easier to gain acceptance than I have, that way she'll feel better asking for your help
Kind regard
Peachy x
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Hey Peachy, thanks for your message. Sorry to hear you're not having the greatest time with it all at the moment.
I read about the spoon theory, thanks for that suggestion, it was really interesting and a good way to think of it, from the point of view of someone without fibro.
Yeah, I think that that is definitely what my mum is struggling with the most; the realisation that she needs to slow down, she can't push herself the way she used to anymore. She still tries, though... hahaha.
Thanks so much again, hope things start to look better for you soon. (: xx
My mum also suffers with fibro. As a starting point don't take any bad moods to heart, its often not meant... unless your being a mucky pup. Also, try and always be positive around her, as it helps lighten their mood
Thanks so much for this. That's definitely great advice. I think it is a learned thing, not taking others bad moods to heart, but I'm getting there, haha. I'll try not to be a mucky pup, haha! Thanks so much <3 xxx
aw this thread did make me smile and misty eyed,I have an 18yr old who lives with her boyfriend and a 6yr old who is my little carer.the eldest I'm sure is in denial and stays away pretty much as she says she can't cope with seeing me this ill ,when as a child I was like a possessed woman cramming as much fun into life as I could,now I can't remember a time when the youngest hasn't seen me ill and life is cruel sometimes,I just wish the older one could see that when she;s about with me and her little sis my mood lifts and the stress goes but as soon as she goes home I have a flare up,so unfair on my littlest one ,I just want the same energy for her I used to have for the biggest,I feel guilty that her life is different because of me but something inside of me says no-way lol.I understand and want my girls to have the best in life and go places ,I feel sometimes I'm forgoten and left out as I can't move much .the best thing my daughter could do to help me is talk to me and say mum i love you,as i'm still the same inside as I was i'm just not mobile.It's nice to see that someone your age can come and ask what can help and I want to post it on my f.b. for my daughter but right now it's me and the little one and god bless her she keeps me sane and gives me the strength to carry on for her as why should she miss out because of fm.
Hey lovely, I'm so sorry to hear about how your daughter has reacted to your fibro. My mum was exactly the same, superwoman, haha.. It is hard to come to terms with, and I understand what your daughter is probably thinking right now. It's a childish sort of "If I pretend it isn't happening, then it's not" sort of idea... I really hope you can get it sorted out with her. I'd hate to lose the relationship I have with my mum over her not being well, and I'm sure she would too. If there's anything I can do to help, let me know.. Maybe talking to someone her own age with a mum going through the same thing would help her, but obviously, you know her better than I. Thanks for your message, big hugs (: xx
Hi Susanna thanks for your reply,it brings a lump to my throat and i'm sure i'm not the only one who is going through this,I try and be stong and be the happy go lucky person I was and your thread just got me.I do my best to keep up relations with my daughter and we've had a tough 7yrs but slowly getting better,it's just this last bit.I like coming on this site cause it makes you realise you're not on your own,you and your mum sound like you've got it sorted and I wish you both best I'm sure in time I'll get it sorted too.I'm just trying to find out what support can be given to young carers and young people who have disabled parents,so fingers crossed and thankyou again for your kind words it made me smile and thats a great feeling
wow I have to say this whole thread has made me very emotional. now I apologise for the fact that i will sound patronising as you are not much younger than me, and infact sound wiser than me but you should be proud of yourself and I'm sure your mum is. you sound like a very caring young woman who has a great about of respect for others. your response to our comments is so mature and heart-warming. I mean I'm sure you aren't always an angel at home and you shouldn't be lol, but carry on as you are and you will make a fine woman, wife and mother some day. as much as you make a fine daughter right now.
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