Going somewhere ?

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Going somewhere ?

Postby jenniferm202 » Wed Feb 01, 2012 12:51 pm

This morning I was woke up by my mum and a social worker in my room , she told me all sorts of really amazing and good stuff for my future !

- I can go to college and have teacher's & people who know and understand about my condition. I can go hours that suit me
-She will be helping me with DLA witch alot of you's sugessted , so the balls finally rolling !
-She will also help me get a cinema card & a bus pass and those sort of things.
- and whatever things I need in the house - she will be coming to access my situation fully in a later date then I could get a new bed and stair lift and things that I really really need !


I am soooooooo Happy that something is finally happening for me !!! esp the schooling situation ! :mrgreen: :-D :-P
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Re: Going somewhere ?

Postby shazq » Wed Feb 01, 2012 1:16 pm

Glad things are going right
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Re: Going somewhere ?

Postby fliss » Wed Feb 01, 2012 1:45 pm

thats great glad ur gettin the help u need as theres loads of us that dont so its so nice to here someone is gettin sorted well done u xx
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Re: Going somewhere ?

Postby jenniferm202 » Wed Feb 01, 2012 2:02 pm

Thank you xxxx
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Re: Going somewhere ?

Postby denys » Wed Feb 01, 2012 2:17 pm

Glad things are headed in the right direction :-D :-D
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Re: Going somewhere ?

Postby FluppyPuffy » Wed Feb 01, 2012 6:01 pm

Altho I'm not really up to posting much at the moment, when I spotted this from you jennifer, I felt I really had to say something :shock: :shock: :shock:

From your first post five days ago, you said you had no support, people thought you were kidding, and that some doctors had even said you were crazy, standing for longer than 20 mins wasn't possible and that you had horrendous things said to you by various health care professionals.

From you being scared of your mum's reactions from her awful temper and her being on the verge of punching your OT, she's now going to be helping you with things like claiming DLA, seeing what aids might be suitable for you, all of which you have found out today. And you have also got a social worker in to help you!! Is the social worker going to work with your OT to see what will be helpful to you?? For the cinema pass, you'll probably have to wait to see if you are eligible for DLA, and it may only be available to applicants which are in receipt of particular levels of DLA. For a bus pass, you'll probably need something from your GP to explain why it would be of benefit to you. If you do, I hope you won't have the same problem when you went to see about your meds not really helping, and you were greeted with
' what do you want me to do about it' ? in a sarcastic voice.


Another thing that I spotted that I would love to know about is how you've gone from struggling to stand for 20 mins to being able to manage for an hour and a half, esp with you saying that your meds have very little effect. I'm in constant pain, so struggle to manage 5 mins at times, so 20 mins would be an absolute miracle for me to do, let alone how long you've managed :yikes: :yikes: :yikes: I would have thought that you would have started trying to increase the length of time you stand for by a few minutes at a time, only increasing the time when you can manage the previous number of minutes without it causing you unmanageable amounts of pain and discomfort. If you've found some ways to manage this length of time, we'd all love to know how you've managed it as it could help some of us on here, as whenever someone finds something that helps, no matter how small, they tend to share it with the rest of us in the hope that it will also benefit another.

It would be great if you could also share what has happened to get all your other problems on the way to being sorted out so quickly as it would probably be of help to a lot of us on here, who despite having multiple~agency involvement are still having to fight to get even the most basic of help that they so desperately need.

I really can't wait to see what you post, as altho it sounds fantastic what will be happening, the speed at what things have changed around for you, and also for the number of issues that will be addressed together, really are so much faster than I have come across before :shock: :shock: :shock:
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Re: Going somewhere ?

Postby jenniferm202 » Wed Feb 01, 2012 6:59 pm

Right , I am going to be completely honest here , I feel like I am been made out to be lying or exaggerating when I can assure you I am not .
Altho I'm not really up to posting much at the moment, when I spotted this from you jennifer, I felt I really had to say something
what have I said that is so out of order that you want to ask me all these question's that are making me feel like I am lying or been weird ? :yikes:

In my first post I wanted to get everything out , I was desperate for people's advice and thought's. Everything Hasn't just happened,the social worker was not MY social worker she was just a social worker coming in to see my sister's beds as the mattress was to small for the actual bed , the woman knew how ill I was and asked to see my bed , my bed is broken , my mum was only allowed to get one new bed the social worker said I would be better of with it , she then asked my mum to come to the social work department to have a meeting with another social worker to discuss getting one for me , as I desperately need one. Just because my mum has anger issues well not so much anger issue's am sure if someone spoke to someone you loved like an idiot you would react like that after countless let down's and horrible things being said,this doesn't mean she hasn't being doing nothing , but today has been a huge break through as for more than a year I have had NO support from any health pro's or social worker's and barley any answer's or being spoken to like an idiot. You have to cut me a little slack here I am 16 , only 16 and I am dealing with all of this at once , I am not as smart as you are nor experienced as you. There has been countless trips to doctor's , specialist's and so on hoping but then being let down , nothing done.



walking - one day I can wake up and I am on alot of pain , I cant stand up let alone walk. The next day I can wake up and feel less sore and in a better mood and optimistic about trying to walk a while say I can manage 20 min that day.The next day I could be so sore again and not walk for the pain is that bad but the next day I can feel brilliant and have break's between walking for an hour and a half as you know your self FM can be different everyday , hence my change in how long I can walk , someday's I take my wheel chair and al be in it for 10 min then have a little walk my self then back in it oh and in my first post I wrote
cant walk for longer than 20 min (that been the longest) when I sit I'm in lots of pain
I made a spelling mistake I meant to say then I sit but I am still in alot of pain after that I carry on walking a bit i.e 20 min then sit and rest I can do that for about an hour and a bit.

I am very lucky and happy that something is happening for me , and I am sorry that your situation is different but I came here for help , support and advice and I feel a little picked on or a better word interagatted :roll:
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Re: Going somewhere ?

Postby denys » Wed Feb 01, 2012 8:01 pm

Jenniferm, you are not being interrogated you are being asked reasonable questions whether you are 16 or 60 we moderators have to be sure you are genuine. We are aware our condition alters day by day but not generally to the extent you claim.

We owe it to other members to ensure we are not encouraging anyone who is maybe not being as honest as they could be. Now I am not saying you are not genuine its just that some of your posts contradict others and so you are being asked to clarify one or two questions

If you have a problem with anything said to you be a moderator or other member please feel free to PM me
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Re: Going somewhere ?

Postby FluppyPuffy » Wed Feb 01, 2012 8:19 pm

I'm rather upset to hear how you think you are being treated, as that was not my intention at all. For some reason you have interpreted my happiness at what is happening for you as picking on you and interrogating you, which it was most definitely not. I was also looking at things from the point of being a moderator as well, which is how I approach all posts, regardless of who has made them.

I interpreted what you had said as happening seemingly fast for you as you had not mentioned how long it had taken to get to the news you've had today. I was merely asking about things with the hope that with something so positive happening to you, there may be something in what you had done or gone thru that could be of help to others experiencing a similar problem.

As for joining here for help, advice and support, that is something we try to do for each other, by sharing our experiences, both good and bad, in the hope that someone will find it helps them, hence why I asked about what you had been doing to increase the length of time you were standing as well as how these amazing things that have come about for you today.

In the replies I've made when responding to your posts, I have tried to offer you advice and support, as well as try to assure you that we were not doubting your dx when you said
jenniferm202 wrote:I appreciate what your saying but I have been diagnoised with fibro , I have alot of symptoms of fm and have been diagnoised with it for sure.....
in your introduction post.

Obviously there is something my posting style that you don't like, even tho all I have tried to do is treat you as the young adult you are. I won't be around for the next few days as my family and I will be going thru the very emotional and desperately upsetting funeral of my partner's father, so there won't be any replies from me that will cause you and more distress. When I am back to posting tho, as the last thing I want to do is antagonise a fellow sufferer, I'll try to avoid your threads, even when there may be something that I have experienced during my 12 years of living with FM that could be of help to you.
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Re: Going somewhere ?

Postby jenniferm202 » Wed Feb 01, 2012 8:47 pm

Its ok , I'll leave . You were here first
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Re: Going somewhere ?

Postby denys » Wed Feb 01, 2012 8:54 pm

Nobody has asked you to leave, Fluppy has said she thinks her posting is upsetting you so therefore she will avoid your posts, there are pleanty of others on here who can offer you advice and all posts will still be moderated. The forum is big enough for all and we are not all going to get on all the time
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Re: Going somewhere ?

Postby jenniferm202 » Wed Feb 01, 2012 9:04 pm

Sometime's I take things a little serious and I put defence up , sorry fuffypuppy , never mind me xx :hugs:
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Re: Going somewhere ?

Postby denys » Wed Feb 01, 2012 9:19 pm

I'm sure Fluppy wont mind when she comes back you will see her on form, you are young and newly diagnosed so have a lot to get your head round. Just take things a little slower and you may find things get a little easier. :-)
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Re: Going somewhere ?

Postby Ldyalb » Wed Feb 01, 2012 9:40 pm

It's easily done, especially with teenage hormones. Boy I do not miss those :-)

The main thing is that things are looking up for you. Bear in mind it could take a while to sort things like DLA out but it's always worth applying for them - the worst thing they can do is say no and you can always appeal. There is a minimum level of DLA you need to get for the cinema card I told you about - there's more info on the link I sent you (can't remember what it was, think it's MRC and/or HRM).

Sounds like you had a stroke of luck with that social worker coming round. The main thing to focus on is getting back to your studies. I feel really old saying it now lol but it really is important to keep at it as much as your body will allow you to.

But now you can get the ball rolling you should start to feel more positive :-)
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Re: Going somewhere ?

Postby noonoo » Fri Feb 03, 2012 12:06 am

Hi jenni,

dont think i have replied to any of your posts before, but i sympathise with you, you are very young and all this must be very difficult for you to deal with and for your mum to, as a mother of four children and having worked with young people and children with life limiting conditions i can understand how hard it can be. fm may not be life limiting but it is a forever ilness, i am finding it very hard to accept for myself. I do think that fluppy was a little harsh on you as you are so young, but in having said that she is grieving at the moment and of course suffering herself from fm. Good luck to you jen hope you can get lots of help and support and keep visiting the forum. take care noonoo
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