How will I cope?

All your fibromyalgia experiences, questions and answers.

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How will I cope?

Postby shellb » Fri Sep 20, 2013 10:17 pm

I'm really sorry I've not even introduced myself yet but I just can't see an end to all this pain, I have been diagnosed with FM for not even a month over the last 2 years I have been unwell, told it was depression, anxiety, carpal tunnel etc etc in a way I'm please I have a diagnosis but wish it was something treatable (something I think all of you will understand) 3 years ago I was a successful staff nurse working on a trauma ward, then I got pregnant and my daughter is 2 years 5 months and I've never been well since. I've lost my job, I'm parenting alone, My family live 2 hours away and most are estranged I get paranoid that my friends think I'm lazy so I won't ask for help ,I have been refuse ESA some days I can't even lift my child for a hug never mind brush my hair etc etc sorry for this rambling post just needed to get it out please could someone share a there a light however faint thankyou and sorry x
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Re: How will I cope?

Postby deanna dimech » Fri Sep 20, 2013 10:38 pm

Firstly stop fighting the pain, Fibro has to win each time or it will hit you even harder . If you rest when your body tells you to rest you will feel better with in a day or two. Go onto the fibro uk sight and print of what fibro is and show it to all your friends and family and get them on your side , you have shown them already you are hard working I'm sure they don't think you are lazy they don't understand
fibro, But you will need support so if you don't get it from your friends you may need to think about moving back near your family. On fibro uk you will find meeting near you go and meet others with fibro it helps when someone understand how you feel like we do. Once you stop fighting fibro and you are on the right meds for you ,you may be able to go back to work , good luck and we are always here for you Deanna
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Re: How will I cope?

Postby karpep » Fri Sep 20, 2013 11:57 pm

Please don't feel alone, i was diagnosed about 2 months ago, im desperately trying not to let fibro get the better of me but like the post before me says you do have to let it win. once you get your meds right and get to know when to rest it becomes more bearable,i have been so close to giving up. Basically i focus so hard on my job because i need to work to pay bills that when i get home the minute i relax Hello Pain Hello exhaustion, I do feel down and feel im letting people down but i printed the post (one for the non believers) it lists every thing we go through and feel. just type it in to the search bar on here and it will come up. i thank the person who posted it as my family and friends are more understanding.Just listen to your body and rest when you can, stay positive,if your meds are not helping go back to your GP there are multiple meds to try and everyone is different its all about trial and error.Stay strong x
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Re: How will I cope?

Postby FluppyPuffy » Sat Sep 21, 2013 12:08 am

:welcome: to our little sanctuary shell :cow-wave: :cow-wave:

Don't worry about introducing yourself just yet, say Hello when you're in a bit of a better place and feel up to it.

How you're feeling at the moment is something that has been shared by pretty much all of us after we have been told we have FM, so you're not alone with this. Whilst there is the relief that there is finally a name for what you have been experiencing, there is also an overwhelming realisation that follows it that FM is with you for the long haul, which is :yikes: :yikes: :yikes: :yikes: :yikes:

This time will pass, it just can't be rushed or a short cut taken to get thru it. As you find your way thru it, things will start to feel a little lighter and brighter for you. It will be bumpy along the way, but we'll do what we can to support you when you need it :teddy-bear: :teddy-bear: :teddy-bear:

Rather than battling against everything, you need to try and listen to your body and go with what it is telling you. When you need to rest, take a break, when you're doing something, don't push yourself to finish it, just do it for a short period of time, then take a break until you feel ready to carry on again, then start again. It's a bit fiddly and faffy, but if you can get into doing things in this sort of way, then it can help with how you are feeling.

Quite often, we think that we know what people around us are thinking about us and our situation, yet in most cases what we imagine them to be thinking is very far off the mark. So whilst you're thinking that your friends think you are lazy, in reality they may well be thinking nothing of the sort, and could even be thinking the complete opposite. If you were to ask some of them, you could find that they are in fact very worried about you, but just don't know the best way to talk to you about it.

Are you appealing the decision you were given about ESA?? If not, then it might be something to consider doing. Or if it has gone beyond the time period in which you can lodge an appeal, you could look into the possibility of submitting a Change Of Circumstances. There is help available from various groups and organisations if you were to consider doing this.

Think I've waffled at you for enough for tonight :oops: :oops: :oops: Anything you want to know about, don't be afraid to ask. If we can help you with it, we will. And if all else fails we can bring out the super~serious stuff..................................................... [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate]
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: How will I cope?

Postby painprincess1 » Sat Sep 21, 2013 1:15 pm

Hi shellb first off i cant add to much to the good advice u have been giving but i can tell u this .except that's your old life was just that. that u have a new life sure its not what u want but its what u got.get help take help go back to dr and ask for different pills if they ones u have are not working well. there many many they can try u on.lifes not over in fact most of us here have a very rough time when we find out until we learn what we can do and what we cant.untill i had my pill changed 100 times i never get out of bed often, i now have a 16 month old baby i just have to learn to rest when she does.half the fight with this is learning to except you have it and learn how to cope .that's why we all come here. there so many good tips on coping ,there always some u will share to. most of all knowing we can come here and get support from ppl that no how we feel really helps. i know when i cant sleep i no theres lots of ppl out there just like me wide awake .so come here offen `chat shout rant away we always here xxxxxx
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Re: How will I cope?

Postby whoami » Sat Sep 21, 2013 1:32 pm

A big welcome to you!

I agree with what Fluppy has said. I will add this though.....

You owe nobody any explanation. You do not have to justify how you feel.

If you need to explain your illness then as suggested give them something to read. For some people, they think if they read it somehow it has more reality. Now then, you have done your bit and what they do with the info is their problem not yours. Other peoples opinion is none of your business. In other words...they have to deal with their thoughts. sometimes we can make ourselves feel a lot worse by feeling guilty because others don't understand.

Shelb, there are a lot of loving, caring people here who can relate. We will help you along, keep reaching out to us.

Remember, you are not defined by fibro, fibro is not who you are.

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Re: How will I cope?

Postby seamonkey » Mon Sep 23, 2013 9:39 am

Hi Shellb,
I can totally sympathise with you, some days i couldnt let my daughter sit on my knee as it was too painfull. I couldnt pick her up, or even bend down to help dress her, so she stood on the sofa! She thought she was a big girl when i bought her a special hairbrush just for her and encouraged her to do her own hair. My youngest daughter is now 8 and ive asked her and she doesnt remember any of it. To her this was and still is our life. I ahd the same feelings of guilt that i couldnt be a 'normal' mum but we made the best of a bad situation. I never ever told a single friend what was wrong, i had had trouble with my back and they assumed thats what it was so i went along with it. I asked for help from my children, who would pick htings up for me, take the washing up the stairs, anything i couldnt manage that day. Now my eldest is 15 and he is still loving and caring and always asks me how im feeling today. I think if our situation was different then my children would be different and i like them just fine the way they are.

My family live in england im in orkney so the other day i sent them the printed out sheets on fibro, they were stunned. Although they still said its a good job i dont have it badly! Maybe one day they will see me all crumpled up with pain and crying saying even my hair hurts! 2 other friends i have now told, not one of them asked me anything about it or even looked vaguely like they cared. Im thinking now theyre not really my friends! This doesnt mean your friends and family will feel like this, you may be suprized and get all sorts of questions and offers of help but untill you can bring yourself to let people know you wont know. True friends will stick by you and offer support etc.

When my youngest was below 5yrs there is a thing called Homestart which offers help to families who are struggling with anything, i asked for help when i couldnt drive as there was no bus and nearest shop was 17.5miles away. A lovely lady drove me once a week to get the shopping, she pushed the trolly as i couldnt with a weeks worth of food for 6 in it! I know if i had asked she would have done more but that was all i could bring myself to ask for. Is there anything like that in your area?
IVe gone on long enough, use your good/better days to do fun things with your little one. That will be what she remembers.
Take care, you are not alone and as long as your being the best mum you can be, im sure thats enough.xx :-D
Last edited by FluppyPuffy on Mon Sep 23, 2013 9:48 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: How will I cope?

Postby shellb » Tue Sep 24, 2013 9:32 pm

Thanks every body, I'm doing a bit better this week still doing too much but I'll get there thankyou mainly for caring x
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