Showing posts with label benefits. Show all posts
Showing posts with label benefits. Show all posts

Thursday, 16 August 2012

How to Offend Disabled People.

Sadly, I cannot find the offending leaflet online. However, when me and Mr walked into the Job Centre the other day for a complusory work-focused interview (nevermind I couldn't sit up long enough for the interview) I was met with a barrage of leaflets asking if I would be better off in work.

Of course I'd be better off in work! We could afford everything we want, and live somewhere nice, and have a mortgage and settle down, afford holidays and all our car expenses. Life would be amazing if we were healthy and could earn our own money, it's all we want!

But some of us do not have a choice, and to be treated as if this is my choice?

So. F***ing. Angry.


Wednesday, 15 August 2012

How to Waste Tax Payers Money.

It's pretty simple really, you just send someone who is obviously not well enough to work to attend work-focused interviews. A waste of people's time, people's money, and only causing me and Mr to stay ill for longer.

Well done, government.

Most of it was spent with the interviewer complaining about the lack of air conditioning in the building, as she knew it was pointless, too.

Just think, stop my interviews, and you could give the staff decent working conditions...


Monday, 30 April 2012

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?

Tuesday, 28 February 2012

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.

Thursday, 9 February 2012

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.

Sunday, 5 February 2012

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!

Saturday, 4 February 2012

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.

Friday, 3 February 2012

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.

Wednesday, 25 January 2012

I read a lot of blogs.

That might even be an understatement... And within those many, many blogs, are a good amount of Christian relationship blogs. Man, that sounds tedious. But I've got into them because of the people writing them, and the honesty with which they write.

Lots of these blogs hit notes with me, whether it's the balance of housework within a marriage, or being stuck in an "inbetween" (inbetween studying and working, renting and buying, being a couple and being parents etc). I so often go to start writing a comment, but in the midst of the comment I end up saying, "it's different for us though, we've both got chronic illnesses, so we have to work it this way, and it's like this because of it...", and so on and so forth... And then I hold down Cmd+A, and press delete. Because noone who reads that will understand. And I don't have the energy to explain.

You might be stuck in an inbetween, but at least you can actively do stuff! We're stuck in an inbetween where just making a meal is enough to confine us to bed spasming in pain. You might argue over who has to do the housework, we have to call our parents (who are pensioners!) in to do the most basic of chores because we just can't. We have to rescue the other person as their legs give way, literally pick them up off the floor and laugh through it all because it's the 5th time it's happened since we woke up a few hours ago.

Our life is unimaginable to you. But don't block it out of your head, because ME can strike anyone at anytime.



Just over 2 weeks to my DLA tribunal. Applied for taxi fares, here's hoping they'll pay...

Sunday, 1 January 2012

My Health.

My health isn't just a list of terms such as ME, depression, anxiety, sleep problems, back pain and thrush.

My health isn't just the information detailed within my NHS file - just a list of what the drs see - and how they choose to see it.

My health isn't the list of prescriptions I try each year.

My health isn't the smile I put on my face when I try to hide how I feel.

My health isn't the thousands of words and hours of essay writing taken to claim the most basic of sickness benefits.

My health is what I have to live with TWENTY FOUR SEVEN.

This year will mark 12 years with ME. Today marks 6 months with thrush. I wish I could have a break.

Tuesday, 22 November 2011

A month later.

Can't believe it's been so long since I last posted! I have so many things I want to write about too, it just hasn't been feasible.

Mr took me on a surprise holiday, which was wonderful. But, of course, resulted in a double crash for us when we returned. The last fortnight has consisted of takeaways, packet meals, and laundry growing mould!

However, we've also had some really positive happenings! Mr got awarded higher rate mobility and lower rate care DLA, which is the biggest blessing. Also means he now has a blue badge, free car tax, and we're of course applying for free tunnel travel and the cinema pass. This makes such a huge difference to our lives! Especially as my legs have crumbled slightly, so less far to walk is always a bonus.

Mr also saw the ADD specialists at St Catherine's hospital this morning, and it has to be one of the most positive appointments we've ever had at a hospital. We didn't have to wait long, although the meeting lasted forever! The dr and the nurse were lovely and understanding, and we have 2 prescriptions for him to try, to hopefully help him both short term and long term. Yay!

In slightly sadder news, I've officially left the charity that supported me for 6 years, after changes took place (both in the charity and in my life) meaning it wasn't where I was meant to be anymore. It's weird looking to the future without it, though all my friends remain in contact!

It's half 1 in the morning, and I've already had a slight emotional breakdown tonight, so really must go... Remind me to keep you up to date with how the ADD treatment goes!

Thursday, 27 October 2011

Please excuse the brief post.

I've had a crazy busy day and am insanely tired!

Mr had his DLA medical today. It went so much better than his ESA one! For starters, it was at home, so no dealing with taxis and waiting around.

The Dr turned up an hour early - I expected him to, so as to catch us unawares. Of course, catching people out only works when there is something to be caught out, and we have nothing to hide. We were resting in bed when he arrived, and my mother in law was doing housework downstairs - pretty typical day!

He was a nice man. You never know how much they take in, and afterwards you remember how much you didn't say, but at least we weren't treated nastily, and Mr was able to stop the physical examination when it got too much. (With his ESA medical he was told if he didn't do everything he would be called back again and again until he did.)



I feel angry and hurt by the Government and the media atm. They are discriminating against disabled people. People need to realise that one day they may become permanently disabled and dependent on benefits.

Monday, 24 October 2011

The reality of Welfare Rights funding cuts...

... and why we won't return to the CAB.

Mr phoned Welfare Rights this morning. They've been with us since June, when we stumbled across them whilst looking for support for Mr's ESA claim. They invited us in and talked through our finances and benefits claims; and since then have phoned us occasionally to see how things are going for us. Despite being a government organisation, they have felt the most concerned for our welfare.

Over the phone, they were able to give Mr advice on his medical this week, just grounding him in how to approach it, really.

Mr asked about a representative for my DLA tribunal... We can go in nearer the time and have some help preparing, but there is no longer funding to provide a representative to tribunals. And this is where the funding cuts hit the poor and disabled first.


The only suggestion given was to go to the Citizen's Advice Bureau. Sadly, this just isn't an option for us. Aside from the fact that appointments at our local CAB are gold dust (the only time we went, we booked an appointment, but only got in the door because someone had forgotten to lock it, and were then forced to sit there for 3 hours), the quality of the service is... dare I say it... unacceptable? Please don't shout at me, I am fully aware it's volunteer based, and I am sure there are many caring, knowledgable and supportive volunteers... I just haven't met one yet.

We first used a CAB for Mr's ESA tribunal (for his first claim - he's claimed twice now), and the lady we had there barely believed he was ill, and instead of basing the tribunal argument on his serious health conditions, she was encouraging him to lie about being suicidal or having uncontrollable anger. We were not prepared to lie, his health says it all, and thanks to her we lost the tribunal.

We went to a CAB again when we moved in together (which is when we snuck in through the unlocked door...!) and wanted to know what we were entitled to. They informed us that because I was on Incapactiy Benefit we couldn't get any other income related help. We lived off £106 a week for over a year, until Welfare Rights came on the scene, and informed us we were entitled to an Income Support top up, bringing our income to a point that we can actually survive. (We managed to get 3 months back payment after some strongly worded letters about the CAB, but we still lost a year's worth of Income Support, and we lost our savings, since we had to use them to survive.)


And so, thanks to funding cuts, we shall be making our health worse, to fight for DLA, which is about to be revamped and probably taken away from us anyway, just so we have a little bit of money left over when we've paid all the bills.

Friday, 21 October 2011

"Something for something" & DLA contd

You may have heard the Government's latest mantra mentioned on both BBC and Guardian, "something for something".

It works around the concept that to receive benefits you must give something. Even when disabled. Whether this "something" consists of volunteering or working remains to be seen.

And, if like me and Mr you are simply too ill to work? Well. We obviously have no value in society. If we can prove our invisible disabilities are real and serious, and that we're not just "workshy", we might get basic support. But we know what it's like to prove to the benefits system that you're ill when you don't fit into tick boxes.

I have never hated this country more than since it became a ConDemned nation. Being disabled is one of the most difficult trials, more than a healthy person could understand. Add in the concept of being scum and a drain on society; add in benefit forms, medicals, appeals and tribunals; add in Atos and this horrific Government... And you're just left wondering what the point is.


Yesterdays post consisted of 2 more DLA letters. One for me - looks like they don't believe I'm as ill as I am, since they're sending me straight to tribunal without a medical. And I don't even have an ME specialist letter to help my case, since they want me to have group therapy rather than see a specialist. Its only been 11 years, I think I know how to manage my condition thank you very much. I just need some medical support behind me. Especially when my dr denied my need for care when they wrote to her. Anyone wish to scream with me?

And the second letter? Mr has a home medical next week. That crushing weight became heavier. I am living proof that the benefits system makes your health worse. When we don't have a battle on I can keep my stress and anxiety under control. Benefits battles make those symptoms flare up for weeks/months at a time, which in turn makes my health worse and takes me further away from recovery.

As does every new mantra against disabled people, every scheme against us, and every comment that belittles the horrificness of this process.

Wednesday, 19 October 2011

Brown Envelopes

If you've spent any time in the benefits system, you'll know about, and probably fear, the brown envelopes. Letters from the DWP, more often than not carrying bad news. Atos however, use white envelopes, relieving the initial fear of post landing on your doorstep. Well, until you see who it's from, when the fear quadruples.

Mr received an Atos letter today, informing him he will have a medical as part of his DLA claim. He's already had a medical this year, for his ESA claim. We fought for months to get it at home, and eventually he had to go to their centre for it. He fell head first out the taxi when he got there, and we were both treated horifically by the "nurse". She practically shouted at me when I stood up for him,  she threatened him when he was too ill to move, and he was told to pull himself together when his leg spasmed.

This medical looks like it will be at our house, which is a huge improvement. It is still terrifying though. I suffer from awful stress, and it makes my ME so much worse. The moment we got that letter a huge weight dropped into me again, and I don't know how to shift it. It's just stuck there, sucking everything from me. My anxiety is high and I've been shaking for hours now.

Will I be getting a similar letter through the post this week? I'm applying for DLA too, and unlike Mr I haven't had a medical since 2008.

I'm terrifed. It's not "just a form", it's not "just a medical". It's a stressful, life destroying, humiliating experience, where you have to try and prove the truth - you have a fluctuating invisible disability, that you desperately need help with, but which doesn't fit into any of their tick boxes.

We're entitled to this help, and I hate the world making us feel like "benefit scrounging scum". We're disabled, not lazy. And being disabled doesn't make us a lower class. You might be this ill one day.

 

Friday, 7 October 2011

"Just" a Form.

This article was published recently, and it made such a refreshing read. It relieves a sense of loneliness when you read that you're not the only people being thoroughly demoralised and beaten about by the benefits system. I mean, you know you aren't, but to hear someone else writing a piece that could be about you, is a welcome relief from the torrent of "benefit scrounging scum".

However, then I read a comment, which to some extent implied that it was "just a form". Let me quote it for you.

The second point is that the application (and justification) regime for benefits is too ‘tough.’  Again, money is not free, governments must rely upon tax receipts.  And it is right and proper that those tax payers see justification for where their money is spent.  It should be rigorous, it should be testing.  Money is supplied from a country that does not have any and from tax payers that also must budget and struggle to make ends meet.

This is not a radical concept.  As a civil servant, most of my day is spent justifying and reconciling where my work and money is spent.  I must write a report for every penny I spend, justifying how it is used in the pursuit of the aims of my job.  At the end of my 60 hour week, I too am left tired, exhausted, and questioning my career choices. 

Government money is not free, it is built on a currently unstable tax base.  Do not forget where it comes from.  If filling in a form is at the core of your complaint, I can recommend an investigation into the US welfare system, or indeed Afghanistan’s.

The scary thing is, I know this person. And hearing this from him made me realise just how oblivious he is to the truth we write about in this blog. Now, I know I haven't really gone into our battles with benefits, but the only reason is because it is so complex I struggle to know where to start!

The thing is, to a healthy person, a benefits form, be it IB, ESA, or DLA, is just that, a form. But to a healthy person, brushing your teeth is just brushing your teeth. A healthy person can just have a shower, or even just do a supermarket shop. When you're disabled, nothing is "just" something, and merely living becomes a job much harder than 60 hours a week. It's a 24/7 job to keep your self alive and functioning to some degree. It's attempting to barely exist - your hopes in actually living life are gone.

In the past 12 months, I have had to fill in an ESA form for my husband; an IB form for myself; and a DLA form for each of us. On top of this, we've had to fill in paperwork for 3 tribunals, plus an appeal for IS. Oh, so that's just a bit of paperwork? Maybe, if you're healthy.

Let me recall the latest, the DLA form. It's bringing tears to my eyes just thinking about it. We, a disabled couple, had 6 weeks to fill in the form. The DWP, a healthy organisation, had 8 weeks to process it (and they ignored half the information we gave, meaning we need to resend it). There are about 60 questions in the form, over half of which require essays for answers. It took the 2 of us about an hour to do a rough draft of each question. Again, that might not seem much to a healthy person. But that's 30 hours. Plus the other questions. And making it legible. And photocopying it all. Let me break it down.

My husband's brain fog and ADD means he has very poor concentration, often forgets words and cannot form sentences. His fatigue means he cannot focus on something without becoming so tired he needs to sleep. He cannot sit up for more than a few minutes. He cannot write or type for more than a small amount because of pain.

My anxiety means that each bit of the form haunts me constantly. If I know I have a benefit renewal coming up, or if I'm in an appeal (which can last for over a year) - just it's presence in my life stresses me so powerfully that my head crumbles. My brain fog means sentences are difficult to form coherently. My pain levels make writing and typing difficult, and I too cannot sit up.

We are both trying to recover from this horrible, horrible illness that is ME. And spending an hour each and every day trying to fill in a form to prove this made us too ill to cook, to wash ourselves... Anything. We had to have family round two or three times as much as normal because we couldn't cope, and afterwards we didn't leave the house for weeks as we had to recover. Mental energy effects our physical energy.

Can you begin to grasp the impact "just a form" had on our lives? What I haven't mentioned, is that we ended up doing both our forms in the same 6 weeks. We nearly didn't make it in time - then we would have been penalised. We had to give it to family to write up coherently. They also had to make copies of everything, "just in case".

We had to throw all our dignity out the window to complete that form, and realising just how ill we actually are, and how much care we need fought against all the positivity we try to keep in our lives. The depth of detail one has to give, and the things you have to say to cover yourselves is agonising - I honestly don't think you can begin to understand it unless you live it, day in, day out. I had to draw up memories of my most horrific nightmares to give them "examples" of times I've needed night time care - something I require every night. My husband had to recall examples of when an elderly lady offered him help because he had collapsed. You wouldn't mind giving this information if it was at least read, and then responded to with the realisation you are ill. Instead you receive refusal and have to head to tribunal.

We are fully aware that information has to be given to recieve benefits. But this process is soul destroying. And this is without even talking about the medicals. I'm not strong enough to right now.

And seriously? Don't even get me started on this person's understanding of "tired" and "exhausted". I'm sure he is still able to get himself out of bed after a 60 hour week - something we were unable to do after an hour filling in one question on that form.