2007 - A Roundup

January
A wonderful birthday, followed by all sorts of hassle from a bunch of cowboys at a computer shop in Lowestoft which shall remain nameless but is found North of the bridge.


February
Benefits-wise, I found out that my Incapacity Benefit (the money you get to live on if you can't work due to illness) was secure until 2010, but then I had to start on renewal forms for my Disability Living Allowance (that's the one you get regardless of work or income to cover the additional costs incurred by the fact of your disability). The form filling and a bout of particularly poor health meant that I spent a lot more time than usual laid up in bed, but I managed to get out for a bit on Steve's birthday, which we both enjoyed.


March
A friend of mine, Jesse, sadly died after many months fighting the double-whammy of heart problems and cancer. I couldn't blog about it at the time - Jesse had been forced to close his blog a few months previously because of a spate of trolls who seemed to be getting their kicks by attacking several vulnerable people (myself included) online from behind a shield of anonymity, and it didn't seem right to offer them another chance to have a pop at him in death.

In March, I also taught myself to knit, which has paid dividends, and first gave thought to buying a Roomba.


April
I found Web of Wool and Twitter which have both been positive in different ways. My knitting progressed, my health picked up a bit, and I met The Locum Doctor who was covering for my GP while she was on maternity leave.


May
May started with Blogging Against Disablism 2007. Unfortunately the same day I also ran up against problems with The Locum Doctor (which we found out several months later were due to an error on the front page of my medical records, but not before The Locum Doctor's Report had lost me my DLA award).

Pip and I made all sorts of plans to have a nice summer with the Littlun, but these were scuppered by various factors including the way the summer of 2007 never really got off the ground. Days out enjoying the sunshine were swapped for feeling extra-awful every time the weather changed. On the other hand, this meant my knitting really took off.


June
Again, a bad start, as I found out for definite that I had been turned down flat for DLA, despite my condition not having improved. June consisted mostly of short bursts of Doing Things to try and mount my case for a reconsideration of that decision, and long periods of waiting for the DWP to do the things they were supposed to do, like sending me forms and information I'd asked for.

I did a fair amount of blogging ("The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot..") and quite a lot of knitting - I completed my needle case which really helped me to stay positive, having a tangible item that I had created. There was also a happy co-incidence when "NS13", a major overhaul of an online game I play, happened just at the same time as me having sent off my DLA Reconsideration paperwork, so I had plenty to get on with while I waited for the reconsidered response.


July
The reconsidered response was another rejection of my DLA claim. I was gobsmacked, as was everyone around me, the people who could see the effect my illness had on my life. "Two years ago, the facts I told them resulted in me being given the middle level of DLA Care component and the higher level of the Mobility component. Today, those same facts result in zero. How can this be right?" I had the right to appeal, but I wasn't well enough - even doing the forms had been making me more and more ill. I made the decision not to appeal and my family and friends breathed a big sigh of relief. It was easier for them to support a Mary with no money but some energy, than a Mary with some money but no energy and a shedload of stress.


August
There was a noticeable improvement in my health, probably due to a combination of the DLA-stress and time-consumption being removed from my life, and the weather steadying out a bit. With the help of other bloggers, I learned to knit in the round on double-pointed needles and I successfully knit my first sock, which I was very proud of. Pip and I took Littlun for a haircut, a course of action it has been decided to NOT repeat. Pip has since arranged to every so often borrow a set of clippers from a friend and do the boy's haircut in short bursts when it's most possible.


September
The second sock was completed, making a matching pair, and even now I'm still very proud of them. Steve and I set a date for moving in together and I began winding up my life in Lowestoft. Sorting out the admin side of moving house was nowhere near as stressful as dealing with the DWP/benefits lot. In fact the only bit that caused any significant trouble was... the DWP/benefits lot.

I had a doctor's appointment with my Regular GP, back from maternity leave. I told her what had happened with my DLA claim. She was shocked, so I told her about what happened with The Locum. She was even more shocked, checked my records... and found that the front page had never been updated to include ME/CFS as an "ongoing condition". Oops.


October
I finished my first knitted garment - a jumper for the Littlun - just in time for Steve to give it to him when he drove a van to Lowestoft to pick up the last of my stuff from my flat. As time went on I settled more and more into living with Steve, and initiated the wrangling with the DWP/Jobcentre to try and get them to help me into paid employment.


November
Joined Ravelry. Bought a Roomba. Realised that life really is quite a lot easier with Steve around, which allowed me to increase my estimate of how many hours of work I could do per week, which in turn meant a higher chance of a job advertised in the local paper matching my spec. In the space of five days I spotted a suitable job-ad, sent off my CV, was offered an interview, attended the interview, and was offered the job. I started work on Tuesday November 13th. It took the rest of the month to organise help with viable transportation to and from work - DWP again, causing more trouble and stress than the job itself. At the end of the month, a really nice surprise - flowers and chocolates to welcome me to the team and congratulate me on learning the job so quickly.


December
It wouldn't really be a month without a cockup from the DWP, and December was no exception. Despite telling several departments in several formats that I had started work, I noticed they were continuing to pay benefit into my account. Happily they've stopped now, but I've yet to get an official explanation or find out what happens to the erroneously-paid funds still sat in my bank account.

Christmas fell in just the right way so that I had a full five days off work - Saturday, Sunday, Christmas Eve Monday, Christmas Day Tuesday, Boxing Day Wednesday. Steve and I went to stay in Lowestoft so I could see my friends and family again. It was absolutely wonderful. We travelled back here on Boxing Day (Wednesday) and I was back at work on Thursday afternoon, which was a bit much for me, but luckily we're past the Christmas rush so I wasn't letting anyone down by being a bit groggier than usual. I'm getting another long weekend for New Year as well, Saturday, Sunday, New Year's Eve Monday, New Year's Day Tuesday, and we're not going anywhere, so I'm hoping that New Year will allow me to fully recover from Christmas and then I'll be back to my normal levels again.


All in all, it's been a busy year, with more ups than downs. It started well and ended even better. I'm happy, loved, secure, productive and relaxed. I'm looking forward to 2008.

Happy New Year.

One Month On

...and working is still going well for me.

My cold is getting better - thanks mostly to Steve, who is being great about making sure that I get a chance to recover properly, get plenty of sleep, enough drinks and so on. If I was on my own and having to deal with cooking and grocery-shopping and laundry and washing-up as well as work, I wouldn't be managing and the cold would have been the final straw to see me land flat on my face.

If I had landed flat on my face... well, I'd have got up again soon enough. The people at work, up to and including The Boss, repeatedly reassured me from day one of my cold that if I had to take a day or two off, it would be fine, they know I work hard and that I'm not going to take the mickey. Apparently I really did look worryingly ill though.

I am managing to not get too anxious about the muppetry of the Incapacity Benefit bunch.

The taxi driver I have hired to get me to and from work is lovely. He's provided the paperwork I need without batting an eyelid, he's friendly, he turns up on time, and on the one or two occasions he personally hasn't been available to pick me up, he's arranged a different driver, he's sorted out payment with them directly (so I just stay on the simple fuss-free written invoice with him), and he's phoned me to let me know the type of car and name of driver. It's going incredibly smoothly.

I got my paycheque, early so it clears before Christmas. It's all sorted out now for PAYE tax and National Insurance contributions (so there's really no excuse for the Incap muppets). It feels good.

So now, there's just a week and a day of work left to do, and then I have a break for Christmas! Steve and I are going to see my family and friends, I'm really looking forward to it. I think my mum is looking forward to it as well - she's even added my favourite type of orange juice to her shopping list for the week, awbless!

Amazing.

I started work on November 13th. I have been a productive little bunny since then. Not only have I worked four hours every weekday, but I've also worked hard to disentangle myself from the benefit system. Here's what I've done so far:

Round One: On the day I was offered the job, I phoned the local Jobcentre to tell the Rubbish DEA, and the regional DWP office to tell the Incapacity Benefit people. They told me to tell them in writing, so I typed up a very nice letter. In all these communications, I gave my name, National Insurance Number (NINo) (note for foreign readers: this is like a social security number, and is used to identify you on all government, welfare and taxation systems), address and so on, and explained as clearly as I possibly could, that I wished to cease my Incapacity Benefit claim from November 13th as I had been offered a job. I told them how many hours I would be doing and how much I would get paid.

Round Two: During my first week of work, trying to arrange transport, I spent some time on the phone with the local council. Again, I fully identified myself including NINo to several people, and explained about having been on Incapacity Benefit, and having recently started work.

Round Three: Having got hold of Access To Work, who are part of the DWP/Jobcentre, I gave all my details again, over the phone and in writing on their forms, including NINo, date I started work, rate of pay, etc. I was approved for assistance with transport to and from work.

Round Four: The Useless DEA had referred me to Remploy back in October, which would have been great if the sole representative of Remploy in this area hadn't been off sick himself. Well, he phoned me back last week and told me that he could get me some extra money - £150 tax-free as an incentive/bonus for anyone who gets off Incapacity Benefit and into work. Fantastic, thought I, and once again gave my full ID and circumstances, over the phone, and again on a form with DWP all over it.

Plus, of course, I've blogged every step of the way. I haven't advertised my identity too much on here but it wouldn't be too difficult for anyone who put their mind to it, to figure out who I am.

Which is all a rather long-winded way of saying, I haven't exactly tried to conceal the fact of my working from anyone, least of all the DWP. No one can accuse me of attempted fraud, or working on the quiet, or trying to hide the fact that I got a job.

This makes it all the more concerning that, since my start-date of 13th November, two lots of Incapacity Benefit plus of course that famous £10 Christmas Bonus have been paid into my bank account.

And that means that my cold-ridden bunged-up self gets to spend tomorrow morning on the phone to the DWP, AGAIN. Joy.

EDIT 11/12/07
Update:
Phoned the DWP Muppet Show. Gave details. Explained situation as a timeline. May have worried the call-taker by making it clear that I keep notes. The overpayment of four weeks of long-term-rate Incapacity Benefit is a sum that can't just be written off as a rounding error (well, in a national sense it could, but) and so there will be an investigation. A decision-maker will determine whether I have to pay the money back (probably) or how much of it I have to pay back, and also whose fault it was.

STEVE: Surely they'll just say it was your fault, you forgot to tell the post-boy in the foreign embassy or something.

A reasonable assumption, but I have a reason to doubt it. (my emphasis)

Dear Mary,
I am a Disability Employment Adviser with a responsibility to support people back to work who have a disability.
Blah blah blah appointment in October,
Yours sincerely,
The Useless DEA

Which I'm taking to mean that, if there's anyone I didn't know I should tell, it's her fault. She is my named liason with the Jobcentre during the Back to Work effort. She is claiming me as a KPI, I was on her caseload, then I entered employment for more than 16 hours a week. She has a self-declared responsibility to support me.

I'll probably have to pay back the money and I'm not complaining about that at all, as it's money I'm not entitled to and didn't ask for. But damned if I'll take responsibility for ANY of their screwups.

Urrrrgh

I have Extra Lurgy. Yep, on top of the usual, I've caught one of the glorious bugs that are floating around at this time of year, and I'm feeling crap. Coughing, wheezing, feverish, glandular, snot-ridden Crap. The last couple of nights have been increasingly bad in terms of sweaty-shivering unpleasantness, and last night in particular was just short bursts of sleep in between painkillers and needing another drink of water.

Luckily (although I'm not sure that's precisely the word I'm looking for), it's the weekend, so I'm able to be mostly in bed. I have a good supply of various strengths of painkillers (advantage to chronic illness), I have plenty of Strepsils, I have some Olbas Oil and I have a couple of boxes of tissues. I also have a Steve, who is slightly concerned and fussing a little - but mostly in terms of running me a bath and making me cups of tea, which, you know, I'm really not complaining about.

What is worrying me is tomorrow, when I am supposed to be at work for four hours. Usually when I've been bug-ill on top of everyday-ill, it's been a case of curling up in bed until it's gone. Now I'm working, that's not an option.

I really, desperately don't want to take time off sick.
I really, desperately don't want to make myself iller again in the long-term sense by not allowing myself a chance to recover from this virus (that's the most likely thing that made me long-term ill in the first place).

I don't want to let down the people I work with by being unavailable at the busiest time of year, making them do my share of the work.
But I also don't want to turn up at the shop, do half an hour's working, then pass out, and make people not only have to do my share of the work, but also make them have to spend time fussing over me, making sure I get home safely, writing it in an incident book and god knows what else.

Hopefully I will have intensive rest today, a much better night tonight, and feel better enough in the morning that I can dose up at lunchtime, go to work and just say "look, I'm going to have to be a bit careful today," but still be more or less functional for those four hours.

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In other news, Reynolds at Random Acts Of Reality is having a competition to win some books. I've had no ideas as yet.

Christmas Cards

One of the things I think is really important, and often overlooked, is Christmas cards.

No, I don't mean like when you're a kid and you carefully write out cards to all the kids in your class apart from that one smelly poo-head you don't like.
No, I don't mean like when you're a teenager and in competition with a sibling to prove who is more popular and ace based on how many cards you got.
Nor do I mean when your business sends cards to all your regular clients and vendors, or when you keep a couple of blank cards in your glovebox just in case, or those godawful "family newsletter" things where you try and advertise how wonderful your household is, and I definitely don't mean e-cards or worse still, the "happy xmas!" email sent automatically to *everyone* on your contacts list including the various customerorders@shop.com. Be honest now. How often have you ever re-opened a Christmas email or given a second thought about the person who sent it?

No, I mean an actual Christmas card chosen and given or sent to someone you actually give a monkeys about.

You see, it's not just a bit of cheap card (as in "£1 for a pack of ten cards?! That works out at TEN PENCE per card! That's ridiculous! It's only a bit of card! I bet it doesn't cost anything like that amount to make!" and so on).

It's a physical reminder, at this dark, cold time of year, that someone cares and appreciates you. Perhaps you're lucky enough to see and speak with other people every day. Perhaps you're constantly surrounded by people who care about you or at least talk to you. Not everyone has that though.

Let's do a thought experiment.

Your [friend or relative] is at home, wearing three jumpers because it's getting bloody cold lately but the cost of heating is getting silly. They're very much looking forward to Christmas Day, big family meal and so on, but right now, time is dragging by a bit and they're kind of alone and there's not much to do and not much cash with which to do it. The post arrives - a gas bill, some advertising, and a Christmas card from you with a little message to say you hope he/she's well, and maybe a bit of personal news. Not an essay, just four or five lines in the card.

Do they:
(a) read it, smile, put the card on the mantelpiece, and smile again every time they sees it over the next week or so, perhaps even occasionally taking it down to have another little look at it?
(b) read it, and then pop it into the recycling box along with the advertising? (admit it, this is what happens to those bulk Christmas emails)
(c) read it, and then phone you up to launch into a diatribe about how it's a terrible waste of money and playing into the hands of corporate fat-cats, and write you out of their will?

Extreme example, obviously, and if the answer is (c) then Do Not Do It. But I reckon the majority of people - even if they are incredibly busy and popular - would smile upon receiving a card from a loved one.

Sometimes the absence of a card can be as striking as its presence. If you're swamped by a hundred cards from work alone, you probably won't notice that a family member hasn't sent a card. If you're a little more isolated, then you will. If you have three grown-up children and only one of them sends you a card, you will wonder what has happened to your relationship with the other two to make them feel you are not even worth a 10p card and a postage stamp?

The last posting date for the UK (Royal Mail first class) is December 20th. UK people wanting to post to other places should check here.

Tis The Season

I love Christmas.

Some people get quite upset about that. There's the religious people, who think that as I don't believe the son of God was born on December 25th, two-thousand-odd years ago, I should just butt out of their meaningful celebration. Then there's the anti-religious people, who think that if I am rejecting Christianity then I should reject the entirety of Christmas because blah perpetuating false ideas wibble consumerism et cetera.

I respect both viewpoints (although I realise the tone of the preceding paragraph my put that into some doubt), and as such, I don't mind whether any of the people I know - or any of the people I don't know - spend their December in church praising their Lord and feeling marvellously spiritual, or in their determinedly undecorated houses ignoring the whole caboodle as best they can and burning any Christmas cards that darken their doormat.

But for me, Christmas is largely about the things in the coca-cola advert. Colour and light at the dark time of year. A little bit of magic, even if you know how it was done. Family and friends. Uplifting mood. And, dare I say it, a bit of excess - plenty to eat, plenty to drink, and giving and recieving (with thoughtfulness and good intentions and time and effort and consideration) gifts, including things that perhaps the recipient wouldn't have bought for themselves on their own (ok that's not in the advert, but Father Christmas is, and that's what he represents. To me).

Occasionally I wonder if that kind of thing - the Coca-Cola Christmas - isn't just the next natural progression of the mid-winter celebration/event/ceremony/whatever that humans do have a tendency to do for the last couple of thousand years. Personally, I'm not a Christian or a Muslim or a Druid or a Wiccan or a Pagan or anything else, I think the closest you'd get to classifying me is Apathetic Agnostic. I'm not even a huge consumerismist. But I love the Christmas celebrations.

Warning: There may be more Christmas-based posts to follow.

Love is...

I had a tough time getting to sleep last night and went a bit feverish for a while, but eventually it wore off. Steve was fussing a bit, and the following conversation happened...

STEVE: Are you warm enough? Do you want more duvet? Do you want all the duvet?
ME: I'm fine, I only want half the duvet. *evil grin* well, maybe 60%.
STEVE: Ah, a marital half, I see.
Steve pushes aside the duvet and places a pillow over his arm and shoulder.
ME: What on earth are you doing?
STEVE: Shed.