New here and need guidance please.

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New here and need guidance please.

Postby seeminglysleepy » Sun Feb 02, 2014 6:20 pm

Hello everyone i am new to this place alltough i have been reading posts here for a while now.
Most people know me as Kae or seeminglysleepy, i am 27 years old and a want to be artist.
I have been suffering with fibromyalgia, IBS, CTS for around 10 years but i got diagnosed last July.

I came here looking for help as i am really desperate for some advice and not sure where to start on my own.
This probably will be a long bit of writing i do apologize in advance.

Up to now i am upset/frustrated with myself because i went through 8 years of education to be a freelance illustrator and the symptoms started taking full hold on me during university years. I had allot of trouble with my studies because of this illness throughout my university time because i had to stay home allot and found it hard to keep up. My grades slipped and what should have been a first degree came out to be a 2.2 degree by just scraping through with my dissertation. It was a nightmare for me to accept in 2011.

I lost my rented home in June 2011, me and my partner kept being turned down for jobs and eventually we had to move in with my father and sister in Cornwall. (it sounds nice but actually its a curse for me)
The house i moved into has only got a two bedrooms and me and my partner sleep in the living room on a sofa bed (its tiny).
My dad is on low income as he gets esa for heart and chest condition and housing benefit to cover the rent but with both me and my partner living with him its become a bigger struggle for both me and my dad because of over crowding, bedroom tax and other attributes making things impossible for everyone living here to get along. We are all constantly stressed and most days i don't feel like i can get up to face the day because of how upsetting it is for us all.

I did get a job here in Cornwall last April as a cleaner but it was short lived because i had a massive fibro flear on the job (at the time i didn't know that) and it made my employer mad because i didn't tell him i was sick...I lost my job and it forced me to go back to the doctors again. After 2 months of ruling things out they came to the conclusion i have fibromyalgia along with IBS. Getting my diagnosis last July i felt a mix of relief and upset as i knew then things was not going to get any easier for me to get a job and in a way i was right.
My income is esa at the moment but i haven't had an assessment yet and it has been well over 5 months now since and no word from them about it. The last time i heard from them is December when i sent a doctors letter and a sick note. I do feel in limbo but have been afraid to ask anyone about it in case i lose the benefit (its all i have)...the house hold will go unstable if i lose it.
My other half is a great comfort. support and help to me but he needs to get work for us to move out of here but with the benefit system being harsh he is taken into consideration for both me and my dad's benefits which lowers the household income badly as this happened to us last year when he did take on work. (we nearly lost the roof from over our heads because the housing benefit only covers some of my dads rent)

I have been on the housing list for a while and still not got any where and well I just feel so stuck and isolated because ever since i have moved in with my dad i haven't gone out much and can't find anyone to be sociable with that will understand...
People around me here don't really understand how this condition is affected me and find it hard relating to what i have been going through so naturally i have been painfully shy and very irritable. I kind of feel like my life is out of control at the moment because so much has gone on and is still going on around me that is beyond my knowledge. In a way i feel afraid of things now and wonder if anyone can give me some direction :(

Thank you so much for reading this, i know its a lot to take in.
Kae
seeminglysleepy
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Location: Cornwall

Re: New here and need guidance please.

Postby FluppyPuffy » Sun Feb 02, 2014 9:08 pm

:cow-wave: :cow-wave: and :welcome: to our little FibroFamily Kae.

Sorry to hear how things are for you currently. Whilst it is that actually experiences the pain and problems that come with FM, the after effects of it always ripple out and affect those we're involved with.

With you currently being in the Assessment Phase of ESA, the only way you will find out what is happening with your claim is to contact them and ask about things. Doing this won't mean that you might lose your benefit, but will give you a better idea of where your claim is along the process.

With the stresses you've mentioned that are affecting both you and your dad, esp in relation to the money side of things, maybe you all need to sit down and have a frank, open discussion about things, see if there are different ways things could be done/handled to make things a little more comfortable for everyone. If you're able to reduce some of these pressures, then it may help with how you are feeling. Have either you or your dad spoken to a Benefits Adviser?? If not, it may be another thing to consider looking into, just to be sure that everything you're both eligible to claim is being so.

Wrt to going out, socialising etc, have you had a look to see if there are any Support Groups in your area?? This is the linky to the Support Groups page on the main UKFM site. Or you can ask Mr Googly if there are any around you, or local clinics/surgeries/centres may have details. Meeting up with fellow FMers can help and who knows, it could lead to the start of new friendships, opportunities etc. You could also have a look to see if there are any courses being run in and around where you are. Quite often free courses are run for a few weeks which could help you get out and about a little more, meet new people etc. These kind of courses can be a great way to see if something that you have an interest in is actually right for you.

Wrt to trying to get people to understand what living with FM can be like, there are a couple of things on here that you could try then with. Have a look at One To Show The Non Believers and The Spoon Theory.
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: New here and need guidance please.

Postby seeminglysleepy » Sun Feb 02, 2014 10:56 pm

Hello FluppyPuffy :wave: thank you for replying to me.

I didn't really know much about the groups so i was afraid to go along. I'm painfully shy about going out these days although i never use to be. I'll contact the Newquay Fibromyalgia Support Group tomorrow and see what kind of things they do there because it would be nice to talk to other people with this condition and understand how they cope day to day with this. I have to admit i have found it hard to adjust to resting allot, taking my time with things and to not feel guilty about it because i use to be really active even with the pains up until the last 3 years. Coping and accepting i have these health conditions has been the hardest part for me so far because i have just kind of stumbled through day to day life and not learned to adapt as such :(

The courses would be a lovely idea if i can find something around here to go to, i really do love doing crafts and wouldn't mind expanding my barriers and getting to know people too. :-)

I'll have to talk with my dad about seeing a benefit adviser here because we haven't seen one since i applied to esa and wasn't aware of if i could claim anything else. I'll also ring up and find out where i am with my esa things as that will take away allot of my worries, i'm actually a bit intimidated by the assessment things because i am not sure what they do. In regards to my dad i know he is in the middle of applying for DLA/P.I.P for himself because his conditions are pretty bad too. I'm under the impression he's getting assessed soon for that because i remember him talking about it last week. Either way i know if both me and my dad go and do these things together i would feel allot more at ease than doing them on my own.

I feel a bit more at ease now I've got some direction so thank you so much for the advice.
Its been a really scary journey so far and felt trapped with this to be honest.
seeminglysleepy
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Posts: 2
Joined: Fri Dec 27, 2013 2:48 pm
Location: Cornwall

Re: New here and need guidance please.

Postby FluppyPuffy » Mon Feb 03, 2014 12:21 am

seeminglysleepy wrote:I didn't really know much about the groups so i was afraid to go along. I'm painfully shy about going out these days although i never use to be. .

You'd be surprised just how many of us have gone thru a very similar thing. I'm now the polar opposite of how I used to be, which is so frustrating as it spreads and infects virtually everything. It is possible to find ways thru these changes tho, a step at a time.

If the Newquay group has a website and/or email addy, you could contact them via that first. I have major problems when it comes to using the phone these days, which is somewhat ironic as when I was working it always seemed to be welded to my ear :shock: :shock: :shock: It's something I tend to do when I need to make first contact, and just helps make things a little easier as it tends to be after I've had a reply to my initial message and has the name of the person I'm needing/wanting to speak to.

It is difficult to adjust, and it takes time. Patience is also needed, but quite a few of us don't seem to have endowed with much of it :facepalm: :facepalm: :facepalm: One phrase you'll come across an awful lot on here is taking things day~by~day, it's how most of us approach things, esp in the early days, and it does help, altho it doesn't always seem like it at first.

Wrt assessments with Atos for ESA, there is a lot of info on the DWP, Benefits & Working board, so you could have a look on there for starters. Whilst most of the stories we hear about these assessments are the nightmare ones, there are also the ones that go much more smoothly as well, so try to keep that in mind if you can.

Definitely call DWP about your ESA claim, they should be able to give you an idea about how long it could take for things to happen. With your dad already having gone thru some of the system, hopefully he'll be able to give you the support you need thru this, as no matter how strong we may be (and when you step back and think about things, no matter how cruddy we may be feeling, we do have some with living with FM) having someone there, even if it's just to say "There, There, There, things will be OK" does make a difference.

Your dad will have been playing the Waiting Game while applying for PIP as that system is also in total chaos :facepalm: :facepalm: :facepalm: If he's going to be having his assessment soon, then things are at least crawling along for him.

It's definitely worth seeing someone who knows the Benefits system as, whilst it may seem that there isn't anything else you're eligible to claim, with the knowledge that have built up over time, there may be other ways that you can be helped, and they would be able to put you in contact with the relevant peoples.

How you've been feeling, trapped and :yikes: :yikes: :yikes: is another thing most of us have experienced at some point along the way, which helps us understand how you're feeling with what you're going thru.

Glad there was something helpful in my ramblings and wafflings :cow-wave: :cow-wave: :cow-wave:
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.

If your dog doesn't like someone, then you probably shouldn't either
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Re: New here and need guidance please.

Postby denys » Mon Feb 03, 2014 12:59 am

Hi Kae and :welcome: to the forum, sorry to hear you are having such a rough time of things at the moment but Flup has given you some excellent advice and maybe the support group could help you find your way through the benefit system too. Your doc should be able to write a letter explaining how your living conditions are affecting your health and that may help with the housing (possibly).

Anyway I hope you start to see alight at the end of the tunnel :cow-wave: :cow-wave:
Denys

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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