7/52 and 8/52

A late update for week 7 on account of illness. After a couple of weeks of soldiering along with what seemed like every cold going, I developed a full-on chest infection with a few less-than-pleasant extras, and spent last weekend - and most of the last week - in a battle to keep hydrated enough to continue breastfeeding. Steve and Jamie have also been struggling, although thankfully with not quite the same spectacular symptoms, and we're indebted to friends, my PAs, and our lovely neighbours, for keeping us going.

Yesterday seemed to turn a corner though, so I'm going to put last weekend's picture into this weekend's post.

7/52 Bath Time!



Full-on baths are currently a weekly occurrence for Jamie and it's amazing how it's different every time. The first time, Steve was terrified to drown him (we'd agreed in pregnancy that baths were domain of Daddy) and afterwards he seemed to all but disappear into the hood of this towel. At four months though, Jamie is more robust and Steve is more confident. He still doesn't quite have the hang of playing in the water but he does seem to enjoy it.

8/52 Not Well



This is what happens when Jamie is ill. I mean, if he's running a temperature or he can't cope with his snot or something then obviously there's crying and distress and vomit (and Jamie's a bit upset too). But once those things are settled down, it's cuddles all the way, which is cute until your arms give out.

Flowers

One of the unblogged adventures of 2013 was my tomato plants. We got a Heinz Tomato Ketchup-themed Christmas present that included a couple of little pots and a packet of tomato seeds. Having a less than stellar track record with novelty-gift plants, we didn't expect anything to actually grow. We just figured that there was nothing to lose by putting them in soil and seeing what happened.



Amazingly, they grew. In fact they grew beyond all expectation, despite snow and frost and neglect. My PA brought over some of her spare plant pots and some compost so that I could pot them on and they could carry on growing. I feared that the act of breaking them apart from their clumps in the tiny pots would kill them... no, they not only survived, but they continued to grow to the point when they got too big again and my lovely neighbour gave me a few more plant pots, plus some bamboo canes and plant ties to hold them up. I ended up with about 14 plants that grew about 50 decent-sized tomatoes between them, the only slight downside being that for some reason they didn't turn red until October, and ended up becoming soup rather than salads.

Once I had not just harvested but also disposed of the tomato plants, I realised that having the soil and the empty pots was a bit sad, so I went to a garden centre to get bulbs which require a level of wintertime maintenance that I can totally deal with, ie, none. Leaving the pots alone for a few cold, wet months resulted in snowdrops, crocuses, and then daffodils this spring.



The daffodils were followed by alliums and then that was it for the bulbs. The yard was bare again.

A day came, about a month ago, when I didn't have any particular tasks that needed doing and had planned to go have a day out somewhere new with my PA. Unfortunately I really wasn't feeling too well at all so I adjusted the activity level down to: go to a garden centre, find a nice little flowering shrub or something already in a pot to brighten up the yard again with minimal effort. Have a cup of tea and some cake at the garden centre cafe, and then come home. Small quiet excursion that is better than staring at four walls.

Unfortunately it was one of those days when even that was too much. I could barely push from the car park to the cafe. I looked at all the cakes and decided that no, I did not want cake (which is not like me). We got the tea for form's sake but I only managed to drink half of it before I absolutely had to go home. Plants didn't really seem like a priority.

My PA was understandably hesitant to leave me all on my own for the rest of the day. Instead she made sure I was safe and comfortable for a nap, and then went to fetch from her own greenhouse the excess plants that she hadn't planted in her garden. While I slept, she filled my pots with all sorts of plants. I was really touched by the gesture, and as the weeks have gone by, the flowers have bloomed into an ever more colourful display.



There's some white ones starting to open on the big plants at the back, and a few tiny blue ones hiding in the gaps between the pots. There's also scented ones mixed in... I don't know what any of them are called, but having them there to look at is making me so happy.

Timing

I often feel quite frustrated about the poor synchronicity between my physical capacity to do things, my opportunities to leave the house, and the weather. For instance, when it's sunny and I feel good and I want to go out and get stuff done, but I'm stuck indoors. Or when my work desk is clear, the weather is okay, and Steve/my PA/someone else is loading my chair into the car for a gleefully-anticipated trip somewhere, but I feel awful and wish I could go back to bed.

So it's with a sort of wry satisfaction that I am sitting here, admittedly in quite a lot of pain while feeling really quite unpleasant with medication side effects, but listening to the rain thrash down outside, snuggled up in a fluffy jumper and the safe and certain knowledge that the nearest I need to get to going Out There today was this morning when I brought the milk in.

There's not even much I need to do In Here.

I'm dopey and tired and I can't sleep for pain, but at least for once my brain's not filling itself up with all the things I should or would rather be doing.

'Cept maybe make another cup of tea.

Naidex

Following on from my last post, I carried on in the bit-under-the-weather vein for a few days and met with repeated frustration on the balloon-quest and several other things I wanted to push forwards with. It wasn't a great week.

Nevertheless, some wonderfully good things happened - we started to get RSVPs from wedding guests, and Pip has got a decent job that actually uses his skills and qualifications, and Steve had a much-needed full weekend away with a friend. I was able to get quite a bit of rest in, and then on Tuesday, I just turned into an incredible luck magnet.

The first thing that happened on Tuesday, was that I managed to book a new balloon decoration firm.

The second wonderful thing happened - Shopmobility had received my innertubes and my wheels were fitted and ready to collect.

The third wonderful thing was that the ever-lovely Carie, ably assisted by the charming Miss Kitty, gave me a lift into town to collect the wheels. While we were about it we had a spot of lunch and cooed over lovely little baby-hats. This seems to me like a marvellous way to spend a lunchtime.

I should have bought a lottery ticket at that point, but I had to go home and recharge my batteries, physical and metaphorical, so that I would be able to thoroughly enjoy my trip to Naidex the next day.

My PA picked me up bright and early in the morning and we managed to get to the NEC with only one minor burst of getting lost (the NEC is so well signposted that several roundabouts actually have more than one exit marked as "NEC" which is generous, I'm sure, but ultimately not helpful for navigation purposes). My Blue Badge was checked and we were ushered through to the disabled parking hangar, and from there on in... it was weird. But in a good way.

I've never been to a crip-centric event before and suddenly there were these three huge halls full of companies wanting to sell me stuff. Not to prescribe like NHS/Social Services/AtW and other 'official' groups do, and not to find a way of adapting their existing product or service to find a halfway point like shops do. But to actually sell. It wasn't all or even mostly wheelchair users, but everything was accessible and there were enough of us that it felt entirely normal to be at seated height (usually I feel a bit like I'm trying to navigate a foreign world made up of steps and buttocks). I also saw at least one other person with the e-motion m15s, which was nice and made up for the man who perhaps didn't realise how loudly he was saying "f---ing show-off with fancy wheels grumblegrumble etc."

There's some wonderful inventions out there. A few of my favourites were:

• A small phone, too small to be much use as a general phone, but that wasn't what it was for - it had just two buttons to be preprogrammed with emergency numbers and was small and light enough to be worn as a wristwatch (it also tells the time). Infinitely preferable to those emergency-button lanyards that reside uselessly on the bedside tables of elderly people up and down the country.


• Adjustable height kitchen worktops, so that a prep space, sink, or hob can be raised or lowered at whim enabling one kitchen to be usable for multiple people with different needs in the same household - like a woman who wants to sit down and a man who's tall and dislikes having to stoop all the time.


• SafeSpaces, which are basically like indoor tents. Designed with autistic kids in mind, they create a small, manageable, safe place for sleep and timeouts. They're soft, waterproof, wipe-clean, with low beds, and they're anchored to the floor 10 inches from the walls of the room so that the user can't hurt themselves. Inside, there's all sorts of sensory therapy stuff, and it was so soothing... I sort of wanted one myself!

Then there was all the tried-and-tested stuff - mobility scooters, wheelchairs, lifts, ramps - and I remember being thrilled to spot grab rails in a whole rainbow of colours rather than just boring clinical white/dark blue.

A number of Twitterers had been planning to go, and although due to the harsh realities of spooniedom some people couldn't make it, I was pleased to meet up with @GentleChaos and @FunkyFairy22 at lunchtime. My PA, although employed directly by me, has been involved with Social Services for several years, so we decided that she would go and say hello to a few familiar faces in the halls while the three of us chatted. It was marvellous, we thoroughly put the world to rights. It's been years since I met new "internet people", particularly on my own, and particularly meeting females, rather than being one of a couple of incidental females in a male-dominated group. I'd like to do it more often.

Unfortunately on the Thursday morning I woke up with no spoons (expected) and an absolutely stinking cold (wasn't quite prepared for that). Each is making the other that bit more unpleasant. However, once I've shifted the cold and can breathe through my nose again, we should be full steam ahead for the wedding!

To err is human...

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:

The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

Pointless Invention

Today I saw what is possibly the most pointless piece of "time-saving" technology ever.

Sainsburys are trialling Prescription Vending Machines. You log in with your fingerprint and/or ID number, put your prescription into the machine, and get your drugs out.

On the face of it, wonderful. I get pretty much the same incredibly common drugs every four weeks and it would save me about twenty minutes a month if I could insert my prescription into a slot with one hand and pick up my tablets with the other.

Then I saw this BBC piece on how it actually works (that link goes to a video piece, I haven't yet found a written article). I'll do a step-by-step description, with what happens when I use the human pharmacy in italic text and the way the machine works in bold.

I go to the pharmacy counter, write the date and sign the prescription form, and hand it to a pharmacy worker (not the pharmacist) who tells me how long it is likely to take. If it's five minutes, I hang around and wait, if it's half an hour they give me a collection ticket and I'll find something else to do and come back later.
I go to the pharmacy vending machine, write the date and sign the prescription form. I mess about for a little while logging into the system (assuming I'm at a height where I can see the screen, and have a level of vision which allows me to see and use a touch-screen interface). Then I put my prescription into a special envelope (assuming there's nothing wrong with my hands)and post it into the little slot. The machine prints off a collection ticket telling me how long I will have to wait.

So far, the machine is taking longer. But what happens next is even better - and it ensures that the wait will never be as short as five minutes. Let's assume my waiting time is 30 minutes and I've wandered off...

The pharmacy assistant places my prescription at the back of a prescriptions box. The pharmacist himself is taking prescriptions from the front and dealing with them one by one. Eventually he gets to mine. He enters my prescriptions into the computer, to make sure none of them clash (this extra layer of checking by a fresh person and a separate computer is why GPs don't tend to give out drugs directly), measures out the drugs, puts them into a paper bag, seals it with a label with my name and NHS number printed on it, and places it onto a shelf which I believe is organised alphabetically for last name.
The pharmacist at the back of the machine - yes, the machine is dependent on a human being at the back of it - retrieves my special envelope, opens it, and takes out my prescription. He enters my prescriptions into the computer (is this sounding familiar yet?), measures out the drugs, puts them into a plastic baggie with my name and NHS number printed on it, and places this into the machine, which may or may not be organised alphabetically, who knows?

Yes, in true mechanical Turk style, there's still an actual qualified pharmacist doing all the actual work. The machine is just a glorified drop-box. So far the processing system is no more automated than it's been for the last ten years or so. They've just added an extra layer of ID-checking that's going to make it difficult for shorter people, people using wheelchairs, people who have trouble with their hands, people who can't see or use touch-screens, and people who are too ill to come out to collect prescriptions and have to send a friend or assistant. I bet the thing talks as well, just to exclude those with impaired hearing/auditory processing too - they might as well try and get the full house.

Anyway, half an hour or more passes and I come back to the pharmacy...

I confirm my name to the pharmacy assistant. They retrieve my bag of drugs from the shelf of prepared prescriptions, ask me to confirm my address and date of birth, and hand it over. They will advise me of any clashes (for instance that antibiotics reduce the effectiveness of the contraceptive pill) and then off I go.
I log in to the system again, assuming as before that I am able to do such a thing. The machine retrieves my bag of drugs from the high-tech shelf inside, and pushes it into the collection chamber with a little note telling me of any clashes. I open the collection chamber, retrieve my tablets, and off I go.

So it takes longer and is no more reliable than the current system, even assuming that there are no mechanical or software issues with the machines - self-checkout, anyone? Nevertheless their claim that it will enable people to skip the queues is probably correct, as the sick or disabled people unable to use the machine will still be queuing at the normal pharmacy. It's not even as if they'll save that much on staffing costs, as the machine still requires a pharmacist to do the bulk of the work and presumably an operator to empty, fill and maintain the thing.

I love technology but I really cannot see the point of this one.

Getting on with 2010

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the top left north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the top left north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.

Prepared

I knew there was a reason I'd put so much time and effort into getting ready for Christmas well ahead of time... we went to a big family meal with a handful of children small portable germ warfare agents present, and now Steve and I are both suffering from Winter Lurgy. Yesterday in particular was hideous, with a mother of a migraine that actually made me throw up (usually they only make me feel nauseous).

Thankfully, having everything sorted out already, along with me not being "at work", has meant that I've been able to properly rest up every day so I'm nothing like as floored as I would be if I was still thrashing myself to pack CDs. Since I'm not that wiped out, I'm able to tackle a bit more of the household stuff than I otherwise would, which in turn gives Steve half a chance to recover when he staggers in from work.

It does mean I've had to put the business development stuff on hold. Again. Yup, the hopes and dreams I had for that referral to the Council for Disabled People being the business development support I needed were unfounded. It turns out that this particular project is set up to help "voluntary and community organisations supporting disabled people" rather than helping disabled people set up businesses that intend to serve anyone, disabled or otherwise. It was a completely inappropriate referral and all we can guess is that the person who referred me was just panicking and opting for the first project with "disability" in the title.

So I'm pretty much figuring it out on my own now, with some helpful printouts from Business Link and any number of PDFs on the HMRC website. Most of the basics are in place - including, today, the good news that my PO Box will be up and running at the beginning of the year - but I have kind of lost momentum. I think I may be best off calling it a proper Christmas/New Year holiday and picking it up again after my birthday.

Also in the New Year, I'll be interviewing for a new PA, as the lady who has been working with me this year has gone on Maternity Leave. I'm quite hopeful, and a lot more confident now that this is the second time going through the recruitment process.

Despite the various setbacks, I'm still feeling really positive about things, and as usual I'm very much looking forward to Christmas. So let's round off with my really awful snapshot of my really lovely Tree.

(edit to add title!)

Wednesday

Wednesday is my day off, but today, it really doesn't feel like one.

What I'm about to say is going to sound really daft...

Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.

Anybody from Social Services reading this, I said almost, and I'm only referring to today...

You see, I have nothing to do.

Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.

The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.

I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.

I have enough library books to last several weeks, and there's nothing at all that I need to shop for.

As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.

Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.

But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.

So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.

All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.

*sniff*

...uuurgh. I have Additional Lurgy in the form of a cold.

Happily it's not the rotten sort of headcold that wimps try to insist is "flu". Just a cold that is a cold that is a cold, with a sinus-y headache, a sore throat, and a metric smegload of snot.

*GRONK*

...uuurgh...

So yeah, another job in the paper I'm thinking of going for. It's a receptionist/admin assistant position, 15 hours a week, for a children's charity. BUT, I have to phone the Mr Director for "an informal chat" about the position, and right now on the phone I sound so icky and goopy and contagious that he'd probably want to autoclave the phone after speaking to me, rather than encouraging me to send in a germy application form. So it'll have to wait a couple of days.

In better news, I'm on track to become an employer myself - my Direct Payments are ready to go just as soon as I've advertised for, interviewed and selected a personal assistant. For this I have sought assistance from the Rowan Organisation but if anyone's got any top tippery they care to share, the comments are open as usual.

Still going...

... but struggling a little bit right now. It is very difficult to maintain a positive mental attitude, and use relaxation and pain-management techniques, when thinking and writing in detail about how painful/difficult/physically impossible any number of normal daily tasks are.

So far I am about half-way through the DLA form and have typed 21 standard A4 pages of 12-point Times New Roman about the physical and cognitive difficulties I have with various things. It's not fun reading.

On Thursday I was sent home sick from work. Went back in on Monday, not fully recovered but not sick enough to warrant being at home. On Tuesday my co-worker went off sick with what sounds like the same thing.

Adding to this not-nice-ness, we are in the middle of an unforseen cashflow crisis that we do not have the means to deal with (and have been since the beginning of the year, in case you hadn't guessed that was what was going on) as my earnings only cover half of our joint essential expenses. It's not immediately dire - both Steve and myself have the capacity to get loans and the suchlike when it becomes really necessary - and it will probably be sorted out in a few months once Steve has passed his exams and gets a job again. It's just distinctly unpleasant At The Moment. Neither of us have been in debt before.

To make matters worse, I suspect that I shall run out of yarny before this cashflow crisis resolves itself. I have a horrible vision of a scarf made of end-of-ball bits from the stash, just so that I have something to do with my hands to relax.

On the plus side, though, my wardrobe will be up by one pair of handknit socks and one soft and snuggly jumper.

Also, I have found out that in October, I will get a pay-rise.

Predictably, this is not based on my skills, but on an increase in the National Minimum Wage. Still, it counts...

I Demand A Recount

Friday: felt ok. Came back from work a bit sore, a bit tired, a bit glad it was the weekend, but nothing out of my ordinary.

COLD SNAP

Saturday: spent it in bed. A couple of hours propped up on pillows with the lappie, but mostly, snoozing.

Sunday: a bit better than Saturday, but still confined to the upstairs floor of the house. In the evening, a sudden downturn.

Monday: Almost back to my normal. I even fixed my own breakfast.

REALISATION: I'll be going to work today. I feel ripped off of my weekend. There should be rules about having a non-weekend due to sickness.

DISCLAIMER: Yes, I'm complaining about going to work. Rest assured that if I feel awful again later today, or tomorrow, and I have to call in sick, I'll probably complain about NOT going to work.

I bet you're grouchy too when you're this sore.

I will try and post something a bit more thoughtful over the next week.

Finished Item: Birthday Sock

Sock on a biscuit jar
Originally uploaded by girl_of_bats

Of course, socks traditionally come in pairs, and I have cast on Birthday Sock 2, but the way things are at the moment, even the completion of One Sock is enough to warrant celebratory feelings.

It's... not a good time. Several things, some bloggable, some not, are causing a certain amount of stress right now. A small taster...

I suspect that tomorrow I have to call the Tax Credits people and/or Royal Mail because of a problem with the paperwork I sent by Recorded Signed For post last week not being flagged as 'delivered' yet. This is going to be made more difficult by me being rather iller than usual at the moment. I suspect I have to make a doctor's appointment as it's getting to the "beyond a joke" point - without Steve, I would be well and truly stuffed by now. I'm worried that even with Steve's help I might end up having to take time off work if my health doesn't pick up again sharpish. I have to sort out some more stuff with the DWP as well.

You get the picture.

I also have to write up a feedback report for Access to Work. Well, I don't have to, which is why I haven't done it yet. But I've been asked to, and I feel like I should.

I need to get some serious praise in for my current adviser, who has been fabulous and got all sorts of things (the taxis, the squishing machine) sorted out pretty much next-day, and I want to say nice things about the scheme in general.

But I also really need to let them know about the problems I have encountered with the system, like the trouble I had getting onto the scheme, the attempts to make One Size Fit All, the catch-22 of not being able to apply for the scheme until you have a definite job offer, but the difficulty of negotiating for a job offer without knowing whether you're likely to get help from the scheme or not.

Actually, if anyone can think of some good phrases I could use, please do put them in the comments, because at the moment I'm having trouble properly saying things I want to say without (a) it coming out wrong and everyone looking confused, (b) half of it coming out before my brain goes off at a tangent and I fail to communicate my original point leaving everyone looking confused, or (c) it coming out right, but far too abrupt/rude/blunt and leaving everyone looking distinctly pissed off. I need all the help I can get.

The sock came out well though.

Let It Snow

... but, if it's going to snow, could it at least have the courtesy to do it properly?

Like many other people with chronic illnesses, my condition is affected by the weather. Snow in particular poses a problem, the combination of low pressure and low temperature giving me a double whammy of Bad.

So when we had an hour or so of snowfall in the late afternoon/early evening of Friday, I was practically a human barometer. I started work feeling my normal self, but at about 4pm I started feeling rotten and shortly after 5pm I was curled up on the floor flinching from the light and trying not to be sick.

Thing is. I would never go so far as to wish it didn't snow. Snow is fun for lots of people and it looks pretty, too. Even if you don't want to go out in it at all, there's a lot of satisfaction to be had in curling up on the sofa with a thick jumper, a hot water bottle and a steaming mug of hot chocolate, gazing out of the window and thinking "ooh, I'm glad I'm not out in that."

That's not what we got on Friday though. We just got big fluffy flakes that melted almost as soon as they'd landed. What's the point in that? Proper snow or none at all, that's what I say. None of these half-measures.

In other news, it's been hard to miss the story about the investment banker David Freud who spent three weeks examining the UK welfare system and published a report which was "highly influential" on new reforms to the system. These reforms have been outlined by James Purnell, a man who has been Work and Pensions secretary for all of a week. Perhaps the reforms are more substantially the work of the previous Work and Pensions secretary... one Mr Peter Hain, who left the position without giving notice, and only did the job part-time anyway, between his other occupations of being the Welsh secretary, and trying to persuade everyone that his failure to disclose donations (for his failed attempt to become deputy leader of the Labour Party) WAS due to incompetence, rather than wilful fraud.

Bearing those track-records in mind, it's hardly surprising that Mr Freud's report contains a disturbing amount of inaccurate information, as well as a certain amount of the 'I don't believe it so it can't possibly be true' philosophy (why is it so unthinkable that at any given point, 500,000 (about 2%) of the 25 million people under 35 in this country are incapacitated in some way?).

I don't want to bang on about this one today - most of my opinion on the demonisation of Incapacity Benefit claimants in the media and their use as a political football can be found in this post - but really, this guy is incredible. Let's just take one example:

"He told the Daily Telegraph it was "ludicrous" medical checks were carried out by a claimant's own GP," because "they're frightened of legal action."

Well, yes, it would be, if this were the case, which it isn't.

A claimant's own GP IS required to fill out a report on a claimant, on the basis that they are likely to be at the centre of a claimant's medical treatment. However, reports are also requested from: the claimant themselves; other medical professionals treating the claimant; and from the "person who knows the claimant best" which could be a carer or friend or relative. An independent medical professional employed by the DWP decides if all the various reports support each other, and quite often, the claimant is then required to travel to another town in order to attend an appointment with an independent DWP doctor who makes yet another report. The whole lot then passes to a panel of bureaucrats who make a decision on whether benefit should be awarded. I cannot spot anywhere in this process which allows for legal action to be taken against the GP unless they were to knowingly provide inaccurate medical information.

If the esteemed *anker has ANY evidence to back up his belief that there are 185,000 claimants working illegally, and a further 1.5 million claiming fraudulently, then he owes it to all of us to pass that information on to the National Benefit Fraud Hotline, either online or by calling 0800 854 440.

Simply making life even more difficult for people trying to cope with a long-term illness is not going to help anybody.

PS, I'm feeling physically rubbish, but in myself, I've perked up a lot in the last couple of days. Not quite as nauseatingly happy as I was a couple of weeks ago, but I'm working on it.

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!

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.

Still working

It's been more than a week now since I started work. It's going well. I am getting very sore and tired, true, but the work gets easier to do as I get more used to it. I've learned the job pretty well and am hardly getting brainflustered at all any more. Co-workers continue to be lovely, and I'm now 'officially' an employee rather than the casual see-how-it-goes thing we started out with.

Things at home are settling out nicely as well. The Roomba (or 'Bloop' as he is coming to be affectionately known) is doing well - not only does he clean the carpets, but I think he also makes us a bit more inclined to keep the place tidy, as roombas aren't really compatible with floors full of trailing wires, shoelaces, knitting, paperwork and whatnot. The shopping delivery from Sainsburys the other day was great, everything well in-date and only a couple of substitutions which I was perfectly happy with (eg "we didn't have the pack of two pain au chocolat that you ordered. So we're substituting a pack of four," OH NOES). Steve has been making more of an effort to do stuff around the house, especially the washing up, which has been an enormous help. Of course when he goes back to work, I'm going to have to pick up a bit more of that, but I'm not panicked about it. The only bit that worries me is the kicking him out of bed in the mornings, which is not a task for the easily discouraged. Steve is reading this, but I honestly think he would have to be among the first to admit that first thing in the morning he Does Not Want To Know about the world outside the duvet.

Knitting is seriously slowed at the moment. I did manage to go to knitting group on Tuesday for about an hour after work, but found myself regretting it a bit. I think it might be better to do what Steve suggested - finish work at 5.30, come home, have a nap, and then go out again to knitting at maybe 7.30 if I'm up to it. I turned down this suggestion last week on the basis that it seemed a bit silly for Steve to have to drive into town and back three times in an evening (1 pick up from work, 2 drop off at knitting, 3 pick up from knitting) but it might be the only realistic way to do it.

As you will have noticed, we're still talking about Steve taking me to and from work. On Friday (the 16th) we went to the council offices and got my ID and Blue Badge and whatnot photocopied, and the plan then was that the council would refer me to Community Transport, and then Community Transport would send me a form to apply to them, and once they had that form back, we could see about transport. However, I haven't had the form yet.

Today, I got through to Access to Work on the phone. Someone answered, took my name and number and a brief run-down of what I wanted, and said he'd arrange for an advisor to call me back.

A few minutes later, Yay, points for speedy actualisation of promises, T, the advisor called me back to tell me that he was going to go through a form with me and it would take 15 or 20 minutes. OK, so far so good, it was mostly stuff like name, address, NINo, do you claim this, do you claim that, what help do you want... great.

An interesting question was "do you claim Incapacity Benefit?" to which my answer, which should have been yes or no, was "not since I've started the job. However, when I first tried to call you, between getting offered the job and starting, then yes, I did get Incapacity Benefit. But your phones were down." Surprisingly enough there wasn't a box for that. T couldn't backdate my AtW claim, so he had to put "no" because at the time of our conversation, I was no longer on benefit. But he did ask what number I had been trying, and apparently "that number" was down for about six weeks. Which implies that they have a second number, which the DEA didn't give me, with which I might have got hold of them sooner. Do we think I should make a complaint about this DEA yet?

Fifteen minutes later, the questions were all answered, so now what? Well, T will post the form to me today. If it isn't with me by Monday, I should call them back. When I get the form, I must check it, sign it, date it, and send it back to them. Once they have the signed form back, then another advisor, a notch up from T, will look at the form and phone me to discuss things in more detail.

In the mean time, the DWP and the council and everyone else official are happy for me to be attempting to get by on £20 a week because of the cost of transport to and from work soaking up most of my earnings - it really is just exceptional luck for me that I have someone who can give me financial support and transport for the short-term immediate future. Dear Peter Hain, THIS is why disabled people who are technically capable of doing some jobs get stuck on Incapacity Benefit...

First Day - short version

There may or may not be a longer version at some point but right now, I'm too shattered to do a proper post.

Major cock-ups - zero
Minor cock-ups - a couple of "doh" moments but I don't think I *really* embarassed myself.
Pain levels - high
Bewilderment - 68%
Tiredness - exhausted
Co-workers - lovely
Specific co-worker who I will be working with all the time - very lovely, could not have imagined better. He's looking out for me without fussing, he's being patient without being patronising, and just seems like a really friendly guy.
Transport - still not sorted
Clothing - hurrah, I can wear flat shoes and comfy clothes

All in all, I'm a bit dead, but not nearly as dead as I feared I might be. I'm going back tomorrow, when I suspect some things will be easier, but some things will be harder going as I pick up speed.

Popped in at knitting to say hello and let my friends there know how it went, but I didn't have it in me to hang about and knit. Which is a shame, but never mind. Maybe once I'm more used to the nature of the work, I'll be able to go and knit as well.

Dinner and an early night I think, and a long soak in the bath tomorrow morning.

Settling In

So, I've been here at Steve's house for about a week now. Technically it is also my home too now, but I'm still having trouble getting my head around that. My clothes are all hung and folded in my designated wardrobe, my makeup and toiletries are on the dressing table, a couple of my family photos are stuck to the fridge, my shoes are lined up by the door, I've even had one or two bits of post arrive addressed to me here. But it still feels very much like Steve's House. If all of my stuff was removed from it, the difference would not be noticeable.

Next week, Steve and his friend should be going in a van to get the rest of my stuff from the flat, like my bed, my sofa, my boxes of books and so on. I'm hoping that having my things here might make Steve's House feel more like My Home too, but at the moment there's nowhere to put any of it. Hopefully by next week we'll have cleared enough space at one end of the lounge so that we can stack up my stuff indoors where at least it won't get rained on... but to me there doesn't seem much difference between having my bits and pieces packed up in a load of boxes at one end of one room in the same house I sleep in, and having my bits and pieces packed up in a load of boxes a couple of hundred miles away. I want books on shelves and ornaments on windowsills, you know?

Sorry this post sounds so negative. I am happy, I am glad I've moved, and I am sure everything will get sorted out. I'm just also intensely tired and sore, which in turn is making me irritable. I'm at that point that most readers will probably identify with from their own long or short-term spells of illness: the bit where there's SO much that needs to be done, but you have to push and push and push yourself just to cover the minimum activities, and pushing yourself becomes an exhausting activity in itself. But there's so much that's important so you keep pushing just as long as you can stand on two legs and when you fall, you rest on the floor, as you are, trying to figure out what things you can usefully do while crawling... On top of which, the "minimum" here and now is very different to the minimum, say, a month ago at the flat. There are a number of things that have to be sorted out ASAP, some mountainous things which need to be chipped away at steadily if any sort of dent is to be made, and other things which aren't that urgent or daunting but are accumulating at an alarming rate.

Happily, one of the things which I have classified as "important" is an attempt at a social life. I went to see my friend Carie on Sunday, and I went to the knitting group at Web of Wool on Tuesday. I had a great time on both these occasions. I have finally finished giving myself blue fingers with Littlun's Jumper (just waiting for that to dry so that I can finish sewing it together) and I've made a start on my next project, which is this lovely pair of mitts, slightly modified for my stepdad. Everyone was very helpful as usual - especially Carie, for suggesting and discussing how to modify the particular pattern, and the ever-patient Anna (who owns Web of Wool) who rescued me when I had a brain-blank and gazed at my cast-on stitches for the mitt for several minutes before saying in a small voice "I've forgotten how to knit in the round." Not a laugh, not a snigger, just a gentle reminder and then my brain clicked in again and everything was fine.

Okay. Not a dazzling social calendar there. But it's still Getting Out and Seeing People and Doing Things, and in my own right rather than as Steve's hanger-on.

Also on the plus side, I am enjoying Cuddles On Tap, as well as copious provision of tea and chocolate. It's also really nice having all of my clothes in one place, rather than opening the wardrobe and realising that the top I want to wear is in a different county.

I'm sure things will get a lot more normal soon enough.

That explains a lot

I had a doctor's appointment the other day, and happily, it was Dr W, my GP of many years, just back from her maternity leave. The whole DLA, GP on leave, locum doctor who wouldn't listen to me thing has finally become much, much more clear.

(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)

It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.

If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.

If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:

"Current ongoing conditions: none"

You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.

Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.

So, let's look at my encounters with Dr M from a more sympathetic point of view.

A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.

You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.


This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...

Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.


In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.