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Akorah

Penalised for fighting the monster

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Heffi

My God- just saw this thread today. How absolutely despicable! It really sticks in my caw that people battling a horrible disease are targeted in this way when there are a number 'swinging the system' who remain above suspicion. One of my ex-colleagues for one who bragged about how he had achieved early retirement with full pension by claiming to be 'depressed'. On full pay for the year he was off by dint of turning up for a week after 6 months to confuse the poor children in his class and then being signed off for another 6 months, boasting to us about how he intended to start on the decorating.

I do hope THIS time justice will prevail and those who are persecuting you end up with egg on their faces !

:squiffy: Heffi

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Akorah

Hi all so i just realised my interviews on world MS day how prophetic if thats the right word lol !! So the man who will be interviewing me called today and he was being quite charming totally different from when we spoke last wednesday. He asked for the number of my doctors i also gave him the number for my MS nurse and my Nuero who he was suprised to learn was in Leeds which then gave me the chance to tell him that as i was on dmds i have to go to a nuero who specialises in MS as i had to be prescribed the injections. he asked me if i had the injections once every 6 months as i had told him i attend the nuero clinic every 6 months i told him i wish! i then explained how i had the injections every friday and that they made me sick for a couple of days after and also that i had to have liver function bloods taken ever 6 months as the injection can damage the liver!! Im hoping he manages to talk to my MS nurse before the interview. Im starting to feel the effects of all the stress on my MS today my legs are terrible! and also ive been shaking something i havent really experienced before pff roll on wednesday then at least i will be able to sleep. :squiffy:


chelly xxx

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happyandy

Honestly what a waste of taxpayers money.

 

I would hope that the interview is a formality. I would send an email to your MP as well, so you can claim that your MP is aware of the case and is taking a keen interest in the outcome.

 

Best of luck

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Christina

I'll be rooting for you on Weds Chelly. I'm glad this guy is doing his homework!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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brainless

we all will; I think it's a v good omen it's on MS day!! :squiffy::think::dunno: , Lottie


Lottie, x

 

LIVING IN THE MOMENT

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Akorah

thanx all :squiffy:


chelly xxx

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Dianni

Hi Chelly

 

Just in case I don't get online in the morning, I wanted to wosh you all the best!

 

As you might know we've had loads of work done in the house. I had guessed there would be a few mutterings around the estate. Everybody knows everybody which can be a blessing and a curse :hearts_circle:

 

Anyway, last week one of the neighbours was on the bus with my daughter and said it was a shame the house was being adapted as it would be no use to anyone else in the future!

 

My dad suggested that anyone who thinks we (people with MS) are fudging the system, or making false claims, should get down on their knees and thank God that it is not them who has MS.

 

I wouldn't wish any illness on anyone, and told my dad this, but I can't help thinking Chelley, that if whoever reported you and the bloke investigating the allegations, could swap places with you for a month, maybe they'd have a bit more bloody empathy!

 

I will be thinking of you and sending you positive vibes and virtual strength. Give it to them straight. Don't be a hero and tell them how well you cope. Tell them how hard it is for you and what you CAN'T do rather than advertising your achievments! Be tough hunni.

 

Hugs

Di

xxx

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Akorah

hi dianni i agree with you totally about if they knew how we feel but they dont and i like you wouldnt wish this on anyone. The nights i lay crying on my bed because of the pain in my legs or the dizzyness in my head or the burning in my feet, I promised myself when i was diagnosed 6 years ago that i wouldnt let it take me. And im going to keep that promise to myself. I wake every morning wondering if my legs will work today or what part of me will hurt and i vow every morning that im going to get out of bed and walk. This much i do and will do for as long as i can. From the moment i put my feet on the ground they hurt but i walk and i smile because im alive and im not giving up on myself. Im supposed to always walk with a stick but i dont if i fall i get back up again i wont look old before my time and having a stick means its harder to walk my dog. I go to bed everyday at 2pm to rest because i need to and i get up at 3.30 when my little girl comes home from school. i go back to bed at 7pm because by then im exhausted and i lay watching tv or talking to friends on my pc. That is not the life of a normal 38 year old woman but im not a normal 38 year old woman Ive got MS but that doesnt mean my life has to stop, And because i have a stubborn nature and positive attitude im going to be penalised. The man from the DWP called my MS nurse today and asked a few questions she told me he said hes got a lot of evidence against me which is ok. You cant video my pain and you cant video my confusion or when i feel the worlds spinning around me or the feeling ive been put on vibrate all over my body or that the muscles in my knee dont work so my knee dislocates with every step. They didnt video me getting my injection every friday or taking shed loads of pain killers. So we will see how it goes im not feeling very positive today and my MS is kicking my ass because of the stress. I dont know what gives someone else the right to judge me or how i feel. Im ranting now lol so i will stop but in plain simple english im shitting myself lol :hearts_circle:


chelly xxx

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Lilacwine

Hiya hun just wanted to let you know I will be thinking of you and wishing you well :cheerleader:

You go and give em hell, no matter how much they have against you, no matter how many photos/videos they have of you, you say " Yeah that me, I look good don't I?....now bloody well ask me HOW I FEEL"! Also remind them NEVER judge a book by it's cover!

 

Big hugs

 

Lilac :hearts_circle:

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happyandy

Hi Chelly,

 

The thing is they have you video'd. Don't deny it. Turn it to your advantage. As you have said, the video doesn't show how much pain or pain relief you take prior to your walk. Or that the advice is to help slow down the progression of the condition you are advised to exercise.

 

Point out that the video wasn't taken on a Sat or Sunday, because you would have been laid up after your Avonex shot. Tell him that a video of you in the house wasn't taken when you had to rest after you walk.

 

Have a list of all the drugs you are taking so that you can function

 

The bottom line is that you were assessed for this benefit due to you having an incurable chronic degenerative condition.

 

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Akorah

Thanx Andy im going to take all my medications with me (Hope hes got a big table!!) And all you said is true. Im gonna do my best to tell him how i feel and explain how it is im just scared that my mind will go blank as it tends to do when im scared and stressed. :hearts_circle: I dont think i will be sleeping much tonight. My legs feel like they have lead weights attatched!!

Pray for me everyone!! lol


chelly xxx

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Lilacwine

Chelly, just wondering, do have someone to go with you?

 

Lilac :hearts_circle:

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Akorah

Hi Lilac yeah my daughter is coming with me she knows me best as shes my carer. Im just hoping she will be able to control herself if he upsets me lol When he videoed me he said theres a young girl with you all the time i told him yes thats my carer i go no where without her as im not safe to be alone so he will see tomorrow she will still be by my side!!


chelly xxx

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Michelle

It's as if they don't want anyone with a disability to have a life. You're payments are there to make life easier for you,not make sure you're housebound with no life. If this all goes against you,make a noise and go public. Sorry Chelly, that's my personality coming through. I hate a system that penalises people in need.

 

I totally agree with Andy and the advice to turn the video to your advantage. I will certainly remember you in my prayers,and you will be with me in thought to. Do some deep breathing exercises before you go in. This can help calm your nerves,and remember that whatever the outcome you are precious,and will come through this.

 

 

Lots of love

 

 

Michelle x

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moomin

Just wanted to say i hope all goes well for you 2mrw. And i hope you get a massive appology from these idiots.

 

Also the low-life who reported you must have an awful lot of time on their hands if they are so interested in how you spend your days (i wonder if they work or if they're on benefits??). I hope they are regretting it!!!!!

 

:hearts_circle:

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Akorah

thanx moomin im sure the low life would regret it if i knew who they were lol but i shall probably never find out! im not going to worry myself about them my mum always used to say ahh if they are talking about you they are leaving some other poor bugger alone lol i just wanna get tomorrow over and done with and start to fight this evil illness again because at the moment im letting it win. And i hate that!! :hearts_circle:


chelly xxx

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Dianni

Hi Chelley

 

You're in my thoughts and prayers tonight and will be tomorrow hunni.

 

Don't let the bastards get you down.

 

Now that's MY personality coming through! (I have a foul mouth at times)

 

Hugs

Di

xxx

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manana

awww my beuatiful angel u gonna get theim u r stronger than theim and they better to not mess with u no one messes with my angel :you-rock: hey i will be with u tomorrow to keep u calm ok lol love uu my baby :lol4:

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Gemma81

GoodLuck Chelly :you-rock:

 

It'll all be over and done with soon, hope it goes well for you and you get a proper appology :lol4:

 

Gemma

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Akorah
awww my beuatiful angel u gonna get theim u r stronger than theim and they better to not mess with u no one messes with my angel :you-rock: hey i will be with u tomorrow to keep u calm ok lol love uu my baby :lol4:

 

 

thanks Said ur the best best friend ever!!


chelly xxx

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Akorah

Thankyou all for your support and encouragement through this hard and shitty time your all great and im sure i will carry your thoughts and prayers into the room with me tomorrow :you-rock: You really are a wonderful bunch of people


chelly xxx

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lisalisa

Good Luck Hun..... will be thinking of you

 

Lisa xxx

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Hezza

Hi Chelly,

I, too, will be thinking of you today. We'll all be with you in spirit honey :you-rock:


Life is short. Eat dessert first. Jacques Torres

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madderbat

You are in my thoughts today, and I'll be with you in spirit - go get 'em xx :you-rock:


Never make the same mistake twice. There are so many new ones you can try a new one every day ;)

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Akorah

Hi all soo here i go!! ive got all my medications with me and im even taking my dog lead as it is a speacialist non pull one you know the halti that goes round his nose. Im trying to keep calm and composed but my lower back on my right sides gone numb!! Great just what i need! Thankyou all for your support and kind wishes i will post as soon as i get back so watch this space!! :hearts_circle:


chelly xxx

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