Good News

At last! Apologies for the delay in the post, it has been a very busy week, and I simply have not had a clear enough head to think.

I had my tribunal a week ago. It went well! It was moved to earlier in the day, as there was a cancellation. A surprisingly welcome relief, as my anxiety was horrific. It was long, and my husband really suffered being upright. But I got awarded Lower Rate Care on personal grounds, as I need attention throughout the day (for example, I won't go to bed unless I am encouraged for several hours). It is a huge relief! Until summer 2014 as well, yay :)

Just got to wait for my ESA result now...

I find after meetings like this you start to remember everything you should have said. Like, why have I been ill for 12 years? I made up answers at the time, but it's because I keep contracting things that make me relapse. Stupid brainfog! Hopefully everything will work out ok though.

Taking some time out to really chill for the next couple of weeks. Much needed! That might mean less posts as I chill, or more as I find time to write the posts I've wanted to for months...

• My personal story with ME.
• Our story of benefit battles.
• The effect vaccinations have had on my life.
• How I learnt to drive.
• Sex as a disabled couple.
• Making the decision to start a family.
• The balance of pacing v enjoying life.
• Continue the My Experience series.
• How every medical professional wishes to confirm the diagnosis I have.
• The jealousy of those around you when you are too ill to work.

I am also hopeful to do a post for ME awareness week, but in case I'm not well enough, please look at this series my friend is doing, it's not too much to read which can be good!

Anyway, it's 5 years today since my husband asked me to be his girlfriend, so I will leave things on the happy note they started :)

This Blasted Illness

I can't say I'm coping very well atm. I've started taking dihydrocodeine regularly because it helps my anxiety, and I pray I don't get addicted.

I had my ESA medical on Friday. Thanks to Benefits and Work I was able to get it recorded. The day before (because of the need to set up the recording equipment) my time was moved from 3pm to 1pm. We arrived 12:50 ish, and weren't seen til nearly half 2... Turns out they now read your ESA50 before you go in, which was quite surprising. And of course took the guy a long time with 30 pages! It was good though, as it meant he understood a bit, and was able to ask relevant questions. And (maybe just because of the recording?) he treated me and my husband with respect, which was a nice change from all the Atos "practitioners" Mr has seen. I was even in the same room (and requested the same chair!) as my IB medical back in 2008.

As for how it went? Well, it all depends upon the tick boxes. I'm hopeful, but you never know. I need to be in the support group though, so even if I'm put in WRAG I'm going to appeal :( I cannot handle the interviews etc, they will kill me. I would say if I don't kill myself first, but I could never leave my husband.

My DLA tribunal is tomorrow, which is scary. At the end of the day, it's not the end of the world if I lose. Our finances stay the same. But I fit the criteria, and I will find it very difficult to accept if they turn me down. It's scary. I just wish the medical profession would offer me more support.

My head problems have got worse with all the benefits madness. My anxiety has got worse, my anger is a whole new level. Just really struggling.

I've been on several new homeopathy remedies this year, but none of them are quite helping me enough, so I don't know how far we will go. I only know that if I am taken off everything I will crumble.

We keep discussing proper anxiety medication. I may be nearing that point. I want to find an end to benefit battles and see if I can improve by myself. But if I can't, or they continue, it may be time.

Mr commented that it's adding years to my illness, fighting all these battles. I can't handle the words. But it's so true.

It's been 12 years, and yet I still can't handle it. We should be earning a living, buying a house and having a family. We shouldn't be going to court to get money to live because we're not even well enough to cook for ourselves. My OCD is becoming more apparent too, as we become more dependent on carers and I can't let go. I feel like I just need to shake myself and all my head problems and physical problems will go away, but they won't. I know I will be healed one day, but right now I can't accept being ill. I'm so angry.

And yes. 10 months later, I still have thrush. I have started doing gentle back stretches on a gym ball though, and I think it might actually be helping my back pain. There has to be hope somewhere?

It's been a while...

So, it's been a while since I updated again...

I got my ESA form sent off. 70 pages/30,000 words. Heh, yeah. It was 2 weeks late, but has thankfully been accepted.

I've got a medical date for end of this month. I've been in a constant panic attack since that letter arrived this morning. Matter of days before my DLA tribunal. Scared.

Going to ask for it to be recorded though *nods*

We're having our windows replaced atm, after they leaked all winter. It's very stressful, and difficult.

One of these days I'll have a full, cheerful post. I hope! :)

Behind the Scenes.

I am sorry this has been so very quiet. I have been writing thousands of words to try and fill in my ESA form with all the relevant detail, and it has left me quite unable to do anything else. It was due back a week ago, and it's still not ready.

So. I had my DLA medical. Went ok, and read his report since too. Not perfect, but ok.

Got my new tribunal date for May, we'll see how that goes...

Been filling in ESA50. Very tough going. Worried I'm writing too much. Will be back late. Looking at exceptional circumstances to get into Support group.

Panicky, but it will be ok.

Oh, and see dr, and anxiety is now written down on my medical records...

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.

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.

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.