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.


Tuesday, 18 October 2011

Genetics and ME.

Ask around the ME community and sooner or later you will reach the argument over the genetics with ME; both with the susceptibility to it, and the risk of passing it on to your children.

I view ME as an umbrella term. The variety of symptoms, experiences and triggers do not point to one distinct illness, but a multitude of undiagnosed problems with the primary symptoms of fatigue and pain.

However, I believe that there is a genetic disposition to developing ME. Why?

I have three siblings. Two of them developed ME in 1989, one recovered in the last 5 years, and the other is nearly recovered. (Although, interestingly, all three of us have had slightly different symptoms.)

Two of my cousins, on either side of the family, have been query ME, as have Uncles and Aunts.

I realise that's just one family, so let me throw in another example.

My sibling who has recovered from ME is married to someone who developed ME at a similar time to him. She is also nearly recovered now. At least 2 of her immediate family members have ME.

On the other hand, my husband is the only one affected in his family. It's not purely genetic...

I view the genetic side of things more as a disposition towards developing ME, rather than anything else. Of course I worry our children will develop ME, but they'll just have to be a bit more careful than other children would. That doesn't mean wrapping them in cotton wool, but it means letting them recover from every infection fully, and it means monitoring the effect of vaccinations on them from the beginning. I believe ME often starts when the immune system becomes overloaded - that can't be avoided initially, but it can be helped.


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.

Wednesday, 5 October 2011

Extra Demands

I released this week, that we live a very fine balance in life. We each know how much we can do, and how much the other can do, and we pick up the pieces in quite a smooth way as we go along. Neither of us likes pushing the other too far, but I think we learn to accept that sometimes we're just not capable of something.

Mr had to go to the drs on Monday morning. He needs more Ritalin to help his ADD, and we're trying to get a home physio. Neither are yet realised, but we have to keep fighting. I was supposed to go in case his brain fog kicked in, but with my increased pain levels and anxiety around drs he let me stay home.

I first knew he was home when I got a phone call from him - he sounded very rough and was sat, or should I say, stuck, in our car. He'd just been sat there on his phone, and he felt a stab in his back, and now he couldn't move.

We managed to get him into the house and up to bed - he couldn't even straighten his legs. My mind went a bit overactive, but at the same time I pulled on God's strength. We phoned his Mum, querying whether I should drive him to A&E or not. It was decided we contact the very dr he'd just left, and wait for a chiro appointment. When the dr eventually called back, she told him to double his already strong painkillers. He was able to straighten his legs by bedtime.

I felt very lonely with him stuck in bed. Everything was left to me, which is where the realisation of how balanced our relationship is hit me. We'd previously decided to do our own dinners that night, and there I was cooking separately for both of us!!

Tuesday he made it downstairs, and he even helped cooked dinner - a blessing since I was too exhausted. His Mum provided it for us though - another blessing!

Today… He managed to drive to the chip shop - neither of us were well enough to cook. He really can't sit up for more than a few minutes, although his back is comfier when lying.

I suppose it's just a bit lonely. And it's silly, cos he has to spend a lot of time in bed, but normally I know he can make it downstairs, he can sit and play a game, he can bend to pick up a bunny… But right now he really can't, and that's a new balance to find until he's better.

His emotional strength never waivers though.

I am supposed to be being referred to our local ME specialist, who saw Mr earlier this year. I haven't given the family histories, and our personal ME stories yet - I really must… But let's just say I've been ill for 11 years; have 2 siblings, a sister-in-law and a husband with ME - I know how it works and how to manage it. I got my diagnosis 7 years ago.

The letter that I received through the post today kindly confirmed that diagnosis (big surprise), although called if "Chronic Fatigue Syndrome". That doesn't make me feel at all positive towards them, but it's not the worst bit.

It went on to say that because of this I have been, and I quote, "fast-tracked" to "group therapy".

Now, I know I have anxiety issues. And I'm on treatment for depression. And I can become very stressed. But seriously?! I have been living with this illness 24/7 for 11 years of my life. I know how to manage it. I might not have made miraculous improvements, but I have had a very enjoyable life (I'll have to post my pacing v. enjoyment discussion at some point too…!)

And you know what? Instead of going along to a meeting which would 1) make me very angry, 2) be utterly pointless and 3) make both me and my husband very ill; I am going to "manage my ME", and not put me and my husband through sitting up for TWO WHOLE HOURS before midday.

Thankfully I've pretty much gone from anger at the letter to laughing at it, but still… I was hoping for this specialist to support my benefit claims!!

P.S. I include a logo of our name at the end so you know which of us is writing. I don't know if Mr ever will, but the option is there :)

Sunday, 2 October 2011

It's the little things.

I think every young marriage, or couple who have moved in together, have certain balances to find. Specifically right now, I'm thinking of housework, and all that it entails - cooking, dishes, laundry, ironing, general cleaning; even locking up the house at night, or sorting out your bunnies.

I doubt it's ever easy to find this balance, but when you're both ill, it becomes much harder. We are lucky, we have parents who come over every week to help keep on top of the dishes, the ironing, the hoovering... You name it, really.

I often think, that for a healthy couple, it must be more a case of "who has the time?", and "who can be bothered?" However, we have an added third element of "who's well enough?" With the phrase "well enough" being very open to interpretation.

Whether it's because I'm the healthier one, or because I'm female, or because I like things clean and tidy... I end up doing a lot of the household stuff. And I mind for one simple reason - doing something as small as soaking a muddy pair of jeans to be washed can cripple my arms and hands to the point I can barely use them for the rest of the day. It's not just a sacrifice of time, it's a sacrifice of a lot of energy and pain reserves to just keep our house ticking over.

I can't begin to imagine how much art I could do without housework...

Which is why, if my husband is well enough to lock the front door one night, or empty the dishwasher one morning, it's almost as precious as being given flowers. It's him thinking of doing something, and sacrificing a bit of his health to keep us going. And I know how much that costs.

Disclaimer: my husband is more helpful than this makes him sound ;)