People don't have a clue...

About how ill the benefits system can make you. How it can destroy what little life you have left.

They don't have a clue about how Atos treat you, or how you have to fight just to have them believe you're ill.

They don't understand how ill you are, and how impossible the forms are. They don't have a clue what a medical is like, or how soul destroying it all is.

They don't understand that we don't choose to be ill, and that if we can't convince Atos how ill we are we will be left penniless.

They're healthy, they don't understand.

Occupational Therapist.

Back in September 2010, Mr had lost his ESA claim and had been put on JSA. His health was deteriorating on it, and he started using a walking stick which we got from my late Grandad.

We started trying to find a way to get him one on the NHS, and were referred to the ME specialist.

We saw the ME specialist January 2011, and after being told there was nothing they could do for him, he was signed off to a local physiotherapist, supposedly to have a look at his needs at home.

Eventually an appointment came through, but we had to go in to see her (late last year I think?) because she couldn't do home visits.

By this point, Mr's first walking stick had broken, and he was (and is still) using a hiking-walking stick of his parent's.

The physio was useless, told him that passive exercise and massage are useless (but we know that when you can't move independently it's really very good to keep moving) and said she couldn't help. But referred us to have an OT come visit us.

She came this afternoon.

Another person who couldn't understand that the specialist wouldn't see us. Couldn't help us. Another person who claimed knowledge in ME, but couldn't understand why Mr has a weak neck, or why he has pain everywhere. Another person who doesn't understand that you just have to muddle through and push through how rubbish you feel just to live. Another person who went on about pacing, and didn't understand how we could know about it if we'd never been on a course… I wanted to walk out in tears.

Heck, she was even trying to convince Mr to spend all his time sat in a dining chair because it would be easier to get in and out of, completely missing the point that he can't sit in chairs like that :|

The medical profession are generally "nice" to us. But they'e useless. And they have all formed such opinions of what ME is, and how to manage it, with no thought as to the people who actually have to live with it day in, day out.

We are getting a shower board to try. And she's supposed to be referring him to someone else to get a walking stick. But she couldn't help us with getting handles to hold on to in the bath. And she couldn't help get him supports for his body when sitting. And honestly? She didn't get ME.



In other news, I've had my ESA form for 6 days of my 4 week time limit, and I haven't even started it. I've had a virus since the day it arrived, and only today have I been able to move my eyes without pain :(

DLA Tribunal (Take 1)

Well... Today was odd.

The taxi turned up and we made it to the court on time. We sat on the floor outside the room until someone got us chairs.

The tribunal clerk came out, and since I was trembling and had already been crying my husband did the talking. Apparently he can't talk on my behalf without being made an appealant. Now you tell us.

About 5-10 minutes later we're called in. The panel (judge, dr and care awareness person) introduce themselves.

"We've read over your claim and we've come to a decision."

Wait. What? They haven't even asked us anything yet... Are they awarding me DLA?

"We are going to ask your GP for your last 13 months medical records..."

OK, now? Or what?

"And someone is going to come to your house and give you a medical."

Ah, right, so what should have happened originally. (They didn't look impressed I'd been sent to tribunal without a medical!)

"It should all happen pretty promptly, then we'll see you back here."

Heh. So I've got to go thru a medical and all this over again. Joy.

/leave.

The good things are that we can now make Mr my appealant. It's not a straight out no. The medical might count for my ESA claim too?

The bad things of course, are that I've got to have a medical and potentially go through the tribunal still, and all that stress. Sorta hoping it'll be reconsidered without me having to go, but we'll have to see.

Oh, and there's nothing overly good in my GP records, so that's a bit worrying. But nothing I can do about that now.

Mr was amazing and spoke well and looked after me <3

DLA prep 3

So, with 3 days to go, I found the appeal papers. They'd ended up at the bottom of a pile of papers near Mr's desk, that I thought was just full of utility bills etc. I don't even remember receiving them... There was also updates with the supporting evidence too. *sigh*

We now have next to no time to work through all this, and it rather makes me want to cry.

                                                       

Done it!! We still need to read over it a bit, but I think we've sorted all our arguments out. I managed it without freaking too, thanks to the dihydrocodeine.

And the copy of my original form in the appeal papers doesn't have any pages - unlike the initial copy of my form they sent me that did. Admittedly they still think there's some missing as we haven't spoken to them since we found the original appeal papers... But hey.

DLA prep 2.

Bit of a misleading title since we haven't managed any the last couple of days. Monday's pounding headache hasn't truly disappeared, we've been living off takeaways and our house is a mess. Carer (mother in law) coming tomorrow though.

My anxiety is a mess. It's not because of my new homeopathy remedy, it's simply life is so severe I can't cope. Don't want to cope. Crying, constantly. It's too difficult.

DLA tribunal in 4 days.

ESA form turning up at any point.

Too ill for my dreams.

I wish the DWP/government/Atos/people who make the decisions could understand how very ill the process makes me. How I'm a trembling crying wreck for weeks at a time and it's all their fault.

I don't even think they'll believe I'm ill.

A Story.

From the age of ten, all she has known is fatigue. Fatigue, pain, and so many other symptoms. She missed out on school life. On friendships. Her Birthdays echoed the resonations of another year gone. And her achievements were backed with "even though she was ill". She watched as others went off to university, to live with friends, and to explore the world. She met her prince… He knew the pain, fatigue and other symptoms too. They lived their own happily ever after. A time of needing care, of mobility aids before their time, and of mountains of paperwork merely to pay the bills. Happily, you ask? Well, they were in love, and they were learning to fly despite the weights pulling them down. They longed for the day they could have their own family and fulfil their dreams. Sadly, they live with a chronic illness with no cure, and so they wait...

Phonecalls.

We weren't well enough to do any more DLA prep today. Mr did several phonecalls on my behalf though - the joy of being unable to use a phone!

He spoke to the tribunals court and they're giving us advance payment to have taxis, which is wonderful. (Altho' scary, as taxis freak me out. At least Mr will be with me!)

He spoke to DLA because we noticed some of the pages of my original form are missing in the photocopy they spent me, and we're concerned they're missing in the tribunal's copy too. They said it could take 3-4 weeks to sort, so we're just going to have to take a complete copy with us!

He also spoke to DLA to check we'd got the correct appeal papers. I'm not convinced they understood, but it appears we do.

He then had to phone ESA because they had the wrong phone number for me... Now they're going to call back at some point to give the spiel about the changeover, which is scary. Mr mentioned to the person he spoke to something about how ill the process was already making me and how much worse it would get, and it sounded like the person took personal offence, but hey.

I'm not coping too well. Severe headpain, hate this ME and need to get out of this horrific benefits system. I can't cope.

DLA prep I

About to do more DLA tribunal prep. So anxious, heart is pounding and want to cry. If this is the state I'm in when in bed with my husband just doing prep for the tribunal, what state am I going to be in on the day? This is a terrible ordeal.

Trying to blank out ESA for now. Trying to believe it will all be ok.
                                                         

Finished prep for the day. Had major brainfog initially but dihydrocodeine helped with that and we got a bit done. Noticed they'd lost some pages in copying my form though so going to have to mention that when Mr phones on Monday too!

Yesterday.

We managed to start prep for the DLA tribunal yesterday. Just a few bullet points for now so we know our main arguments. We're using the Benefits and Work guides. I'm a bit concerned though, as they are talking about this huge booklet of appeal papers, and we don't have anything like that... Are we missing something? Mr is going to have to phone up on Monday and find out, if we're able to wake up early enough.

He also needs to phone the ESA people, as the number they have for me is my parent's house. The thought of him doing them is stressing me out :(

Not coping as well today. I suppose this silly part of me always hoped that we'd be healthy before I was transferred to ESA. And some people dare say it's "just a form".

If I didn't have Mr and God I don't think I'd want to even try and stay alive to make it through all this. They're my strength and they fight for me.

New Battle.

With just under a fortnight until my DLA tribunal, today we start the prep for it. There is no funding available to help us, so we have to work it out ourselves.

Today I also received a brown envelope. This one informing me I'm being moved from IB/IS to ESA. It is terrifying. They intend to phone me in the next couple of weeks - I cannot use phones due to anxiety so here's hoping they will be content speaking to my husband. Then I believe I receive the forms, have very little time to fill them in, and will be faced with a medical and no doubt a tribunal. And then the 6 monthly renewals. It is terrifying. Trying to keep hold of my anxiety. Hoping this doesn't make us relapse. Praying that this isn't as hard as I think it will be.

Entries may be short, limited health, but I will try to follow the process here.