09/52 2018

Week 9
26 February - 04 March



This is Jamie at his play kitchen, positioned in our hallway by the door to the grown-up kitchen so that he can join in without getting underfoot. In this picture he seems to be frying a nice nutritious bottle of Early Learning Centre washing up liquid - he also has a tendency to put toy cars in his microwave - but his favourite cooking activity is to give everyone cups of tea. His teapot is usually on the hob, and generally people are given a cup with an item of play food to enjoy while he keeps everyone topped up.

28/52

We've never carried him around in it, we've never left him unattended in it. But every baby should have the opportunity to play in a laundry basket, and be photographed doing so.

Oops

Should have seen this one coming, really.

For several years now I've been considered by Social Services to need help in the mornings, to get properly and safely washed, dressed, medicated and generally ready to face the day. We only took it up a few months ago (whole other story), and it has been working well and has made a very welcome difference to my life.

This morning my assistant arrived and rang the doorbell - some people have key safes but since I can usually get to the door one way or the other, we've chosen not to have one. Normally that's fine, but today, the Roomba was running. I did not hear the doorbell. I did not hear the doorbell again. I did not hear the knock on the door or the call through the letterbox. The blinds were all shut (unsurprisingly as I was not yet dressed). The poor woman ended up basically running around the house knocking on all the windows with increasing panic. Eventually she reached the one by which I was sitting, but by the time I'd levered myself up to crack the blinds and see who was knocking, she'd already run back round to the front of the house and was about to call base and ask them to ring me... she was extremely relieved when I opened the door.

We've decided that while the Roomba is a wonderful thing, it's best not run when I'm expecting my care calls.

Alas, poor Roomba

In November 2007, Steve and I purchased a Roomba robot vacuum cleaner. In our household, it is probably the most-used domestic appliance after the kettle and the microwave. Certainly it gets used much more frequently than any of my traditional vacuum cleaners ever have (even pre-disability - I was never a great housekeeper), the happy result being that when I hit the deck I am able to just relax until I'm able to stand up, rather than lying there trying not to breathe too deeply for fear of inhaling several months' accumulation of crumbs and dirt. It's that independence thing again. If I think the carpets are too filthy to lie around on, I can just push the button and clean them rather than having to beg and pester and nag and cajole and use up favours to get someone else to do it.

Our Roomba is now very nearly three years old. And he is starting to feel the strain. He was absolutely fine until about a month ago, then one day he worked for about ten seconds and then stopped and sang his sad little song of woe. Slightly concerned, I dismantled his user-serviceable parts (oo-er) and extracted several handfuls of fluff from mechanism areas where fluff should not be. One charge cycle later, and he was fighting fit again.

A week later the same thing happened. This time Steve dismantled him rather more thoroughly and removed another handful of fluff from hard-to-reach areas. One charge cycle later, and he was cleaning the hallway with a smile. On his little non-existent face. You know what I mean.

Now we're at the stage where every time we want him to clean, he runs for anything up to a minute before stopping. Then he sings the sad little song of woe and flashes his little red light, then we reset the battery and mess about with the charger and then he cleans one room, gets back on his charging base, but still sings the little song of woe the next time we try to use him.

I fear he is on his last legs. Wheels. Whatever. He's not quite ready for that great WEEE recycling plant in the sky, but (shhh) if he was claiming DLA it would probably be under the Special Rules.

Amazingly, a Roomba 560 (same model) seems to be currently £300 in the UK (or would be if it was in stock). That's particularly upsetting as we only paid £250 for this one when we bought it three years ago! I say 'only', I mean relatively...

If anyone happens to have any bright ideas, I'm open to suggestions. My instinct says to replace the battery, but a new battery is about £60 which is rather too much for something that may or may not solve the problem. So it looks like we'll be pleading and coaxing him into occasional functionality until after the wedding and putting "new Roomba" at the top of the registry.

Breakfast

I am many, many things, but a culinary wizard is not one of them. Part of that can be placed squarely at the door of chronic illness - the way that "chop one onion" is for me not a quick aside in the flow of a recipe, but a hazardous undertaking that will require a sit down, a rest, and possibly a couple of sticky plasters - but even before I got ill, I would have a good swear at cookery books and online recipes. What is a "ricer"? Why do you assume I have fresh garlic in the house? If I'm "cooking until golden brown", what time should I put the vegetables on? Couldn't you have mentioned that the oven needs pre-heating before the "now put it all in the oven" stage?

So instead, I've focused on perfecting simple dishes. I am pleased to announce my latest accomplishment: Hot Buttered Toast And A Cup Of Tea.

You will need:

for the toast
two slices of Bread
Butter
a Butterknife
a Small Plate

for the tea
Water
a Teabag
Milk and Sugar if you want them
a Cup
a Teaspoon

In addition you will require a fridge (or other means of keeping perishable dairy items chilled), a toaster (or other means of toasting bread) and a kettle (or other means of making water boiling hot). And an appropriate power source for these pieces of equipment, although possibly this is getting a little extreme for the planning...

Step One: Make the tea. While I acknowledge and respect the many regional variations on this theme, I tend to go for swilling a bit of hot water around the cup, chucking the water out, then dropping a teabag and two teaspoons of sugar into the cup before almost-filling it with hot water. Give it a stir, let it brew for a minute, then remove the teabag and add a splash of milk. One last stir, and it's done.

Top Tip: throw the water away down the sink, and throw the teabag away into the bin. The other way around doesn't work so well.

Step two: Prepare the butter. Now this is what's usually the problem. Leave butter out of the fridge, it doesn't keep properly, keep it in the fridge, it's rock solid. So what you do is:

• Remove the butter from the fridge. Put the milk back in, while you're at it. Neatness is a virtue.


• Using the butterknife, cut two slices of butter from the block, each about 2mm or 3mm thick.


• Place the slices of butter on the sideplate.

and then the trick at the crux of the whole procedure:

• Balance the plate on top of the hot cup of tea.

Leave it there for a couple of minutes while toasting your bread. This will be sufficient to warm the butter (so that it's spreadable but not melting) and also to warm the plate (so that your hot toast doesn't become cold toast after being on the plate for ten seconds).

When the toast is done, remove the plate from the top of the cup. Use the butterknife to transfer one warm pat of butter to each slice of toast, and spread. Cut the toast into your preferred shape.

Eat. Drink. Be happy. Leave the marinades to the experts.

Misc

Lots of little things going on, but nothing I can make into a full-on blogpost.

The Tax Credits letter has been sent. So that doesn't need worrying about for a while again.

Steve passed his second exam with flying colours. There's two more to go.

Littlun is due to start at the kindergarten/reception type class at the school on Tuesday, doing half days, five days a week. However due to an administrative snarl-up, Pip won't know if he's doing mornings or afternoons until Monday.

Recycling has been properly introduced in this area. I am incredibly relieved - it was horrible not being able to do it any more after having really got into the habit back in Lowestoft. It's not exactly the same system as I was used to, but they've been really good about sending out the leaflets and whatnot.

What they're not so good at is dealing with queries. The helpline has been utterly swamped. According to the local paper, this is mostly by people who haven't read the leaflet with the list of collection dates, people who are complaining that the system is too complicated (let's put it this way: even I can understand it, so it can't be that hard), and people complaining that the bins are 'unsightly' so they don't want them at the front of their properties and won't give the bin-men access to the back. So, we took the path of least resistance and shelled out a whole £2.99 for a food-caddy from the supermarket rather than messing about to claim our free one.

I've totally slowed down on knitting the jumper because I have to write out longhand the row-by-row instructions for the shoulder shaping to make sure I've really understood it. The instructions in the pattern book are written to incorporate several sizes of one pattern. So for example an instruction might be written as "Cast off 2 (4, 6, 8, 10, 12) sts". If you are knitting the very small size, you cast off 2 sts. If you are knitting the biggest size, you cast off 12 sts. You see? But me, I'm medium-sized, and I keep forgetting which set of numbers I'm meant to be paying attention to and it drives me mad, so I write out the pattern instead.

The sock is coming along nicely. It is the second sock of the birthday pair, made of the stripy Regia Silk yarn I bought with my birthday money back in January. I've turned the heel and have about 10 more rows for the instep and then it's just round and round and round until I get to the toe decreases. Steve 'helpfully' offered that if I was stuck for what to knit next, he could always frog them for me so that I could do them all over again. I am pleased to report that I did NOT skewer him with a 2.5mm double pointed needle, but it was a close call.

And to round off, a Roomba Report. I still love it, I still think it's some of the best money I've ever spent, although I do regret spending the money and wouldn't have done if I'd known how things were going to pan out. But then I suppose that's the same for everyone. Anyway, yes, the Roomba, or "Bloop" as he is now affectionately known, is doing sterling work of keeping the carpets clean for me, but we did have a little incident the other day.

It involved a reel of black cotton that we are both quite sure was safely on a shelf before we pressed the button and closed the door. Perhaps the breeze from the door closing was what caused the reel to fall to the floor. Or perhaps Bloop bumped into the shelf a little bit hard. We don't know - after all, the point is, you don't have to be in the room while it's cleaning.

Thing is, if you're using a conventional vaccuum cleaner, then when you spot a cotton reel on the floor, you stop. You pick up the cotton reel and you place it somewhere safe. If the vaccuum cleaner has already sucked up the end, then you turn it off, untangle it, and only then do you attempt to continue cleaning. Not so for Bloop. He keeps going, and going, and going, and because of how he works, twisting and turning and moving all the time... eventually he had got the entire length of thread wound around his brushes, upon which, he sucked up the plastic reel as well, which finally jammed the brushes and caused him to make his "uh-oh" noise.

Black cotton thread wound tightly in a non-linear fashion onto black brushes. Oh boy. It wouldn't unwind at all. We had to try three different pairs of scissors to cut it all off without cutting the brushes themselves. It was a tricky job. But, even so, after maybe an hour of surgery, it was all sorted out and Bloop was able to do the whole room again, properly.

Steve has presented the incident as being further proof of Bloop's malevolent sentience. Not only does my robot want to join in the knitting, but he even knows better than to have a first try with any of my decent yarn.

Dopey Happy

I really am quite stupidly, insanely, indescribably happy right now.

No reason.

In fact it's been a rather pants few days really - notable points of the last 48 hours include slicing my thumb open while chopping carrots, and getting out of my taxi all ready for work on Friday afternoon and promptly fainting, straight into a puddle, and spending the afternoon wearing cold, wet jeans. Not really up there in the "fun" stakes.

But nevertheless, I feel really positive.

I've just spent the best part of 45 minutes reading a book while Bloop the Roomba cleaned the living room carpet. Every few minutes I was looking up and watching it make its way around the room, thinking and sometimes saying "this is amazing. I live in the 21st century. I have a robot doing my housework."

Carpet cleaned, I took a few photos of the jumper I'm knitting. Again, it was all "wow, I made this, with my hands, I knitted each of these many many stitches, and it's all the right numbers and shape..."

Prior to that I was eating dinner with Steve, which was also incredible. Here's a really nice bloke, who I get on well with, and we're living together, and everything is happy and nice and working out well. It's astonishing.

I almost hope it wears off by Monday, because if I'm just wandering about with a Big Stupid Grin on my face going "hey, that's fantastic!" at everything I see, I'm not going to get a lot of work done.

It can continue tomorrow though.

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...

Job Offer

Got the phone call at lunchtime today, and I have been offered the job.

Amazing. One application, one interview, one job offer. I had been under the impression it wasn't meant to work like that.

The manager asked if I could start Monday but I've said Tuesday because I need to go to the Jobcentre and get all that stuff sorted out.

It's sort of casual to begin with - so if I end up after a week or even an afternoon of it going "owww, eeek, I cannot do this after all" then I can just leave, no harm, no foul, which is good, but does add a little to the nervousness.

I am very excited and nervous. I also have this panic on about how I must get all the housework done in the next two days because once I'm working I won't have the energy any more.

A little bit of help in that direction though - the Roomba is now up and running and as I type, is cleaning the bathroom and landing. Well, the carpets, anyway. It seems to be having fun. I still think it's cute. It is still trying to attack Steve periodically. The cliff-sensor works, so it's not falling down the stairs, but there is one of the bedroom doors that doesn't shut as securely as the others and the Roomba keeps trying to nudge it open.

It seems to put Steve in mind of the Luggage from Discworld - pottering about with homicidal tendencies.

Oh, and from what I hear, my friends and relatives in Lowestoft are all okay. Which is good.

Very quick post

Interview went ok. I don't think I embarassed myself or cocked it up in any especially spectacular way. I'm fairly sure I could do the job - my guess about what's involved was pretty accurate, apparently it's already been being done by someone else for quite some time but now they have a bit more than he can manage on his own.

There were two interviewers - Chris, a fairly young bloke who is the manager, and Maurice, an older bloke who is the owner. They seemed a bit uncertain about how my health would affect my ability to do the job... I was honest about stuff like not being able to go up and down the stairs all day and not being able to spend all day on my feet. They asked about my health in a conversational kind of way ("are you alright with the stairs there?" followed by "so were you in an accident or something?") and I told them in nice, simple, nonspecific terms that a couple of years ago I got loads of viral infections which kind of overloaded my immune system and led to long-term illness to the point where I had to leave work, but that now I am recovered enough to look at part-time work again. I pointed out that I'm getting good at finding ways of doing things and working around the restrictions imposed on me by my illness, and also that I wouldn't say "yes, I can do this/that/the other" if I can't, because I have no interest in making myself more ill again.

They are interviewing two other people, one this afternoon and one tomorrow (Friday) morning. They will contact me on Friday, to say yes, no, or "we need to think about it over the weekend" but they've assured me they will let each of us know either way.

More importantly, the Roomba has arrived, and it is SO cute! It needs to charge for 16 hours, so all we've done with it so far is set up the docking station, pulled the battery tab, and told it to go find home. I pressed the button too long initially so it was about to start the demo and ran off to nibble Steve's shoelaces, but having read the manual I knew how to stop it.

It goes "bloop!" It is so full of cute! I love it!

Tomorrow, it will be charged, and I will play...

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.

Processing

Today, I've been doing a lot of the admin side of moving. This has involved listening to far too much hold-music, negotiating with automated systems, speaking to people with assorted flavours of so-broad-it's-barely-understandable accents from around the globe, and silent swearing when my mobile started to ring *just* as the people at the JobCentre said "Good afternoon, can I take your national insurance number?"

I started my day by sorting out some letters with the date that Steve and I have defined as the Official Moving Date. There's a letter to the landlord, and two to Waveney District Council - one for the Council Tax department and one for the Housing and Council Tax Benefit department (Waveney District Council rarely if ever answer their phones). I emailed the document to myself and went to mum's to print it out. Well, that was the plan. In real life, we discovered mum's printer had run out of ink (magenta ink to be precise, are there any b3tans with a confession to make?). I couldn't easily find a way to convince it that being out of magenta ink did not preclude printing a black and white text-only document, so I let her have the fun of reordering the cartridges while I went to the internet cafe a couple of doors down to print my stuff off there.

Home, a bit of lunch, a bit of a rest, and then I got on the phone, and in the case of TV licensing, the internet, because their automated voice-recognition system is beyond crap. Now it's half past four, and I've decided I'm finished for the phone for the day. My arms and shoulders ache from holding the handset up to my head, and my speech has gone completely, I simply don't make sense any more.

But I'm still not finished for sorting out this move. Let's recap.

DONE:
Notice to Landlord
Council Tax notification
Housing and Council Tax Benefit notification
TV license
Water (supply)
Water (sewerage) (these have to be separate here)
Phone (calls)
Phone (line rental)
Internet
Incapacity Benefit (except, I have to call them again once I've arranged a new GP at the other end)

CAN'T BE DONE YET:
Electricity (need a final meter reading five days before Official Move Date)

TO DO TOMORROW:
Bank
Building Society
Credit Card
Insurance
South Warwickshire PCT (for GP, dentist, etc. Still not entirely sure how this will work)


Can anyone think of anything I've missed? Gas isn't on the list because this is an electric-only flat, and I don't have a car or pet or gun license... ideas welcome.

This afternoon has reassured me that I still have a certain level of job skills, but reminded me that I mustn't get ahead of myself and apply for jobs where I'll have to concentrate for more than an hour or so at a time.

Discoveries

For various reasons, it's seemed like a good idea to start tidying up the flat a bit this week. It's not UN-tidy as such - day to day things like the dishes and the laundry and making sure there's no new life-forms in the fridge are well under control - but there's some less urgent stuff that wanted doing, like pruning my wardrobe and vacuuming under the bed.

This morning I had a wardrobe full of clothes and Nothing To Wear. Now I have five bags of clothes for my sister to go through and a wardrobe that's about a third full of everyday clothes which (with only one or two exceptions such as my one Smart Suit) I have worn and washed at least once in the last twelve months. I think this is an improvement.

I also found at least half a dozen pairs of black tights (I have kept two pairs which were still on the cardboard), a couple of bits of lacy underwear which had hidden behind my socks and still had the tags in, and three or four rather small tops which I used to wear when I was very fit and went out to dance for several hours at least once a week. I'm not even going to try to try them on, I don't think I could deal with that kind of trauma. Sister Dearest will love them though.

Having got over that little blast from the past, I started to tackle the depths of under my bed. At first it wasn't too bad, it was all stuff I knew was there. A plastic box containing my spare duvet. A pair of wings and a halo from a fancy dress competition in the aforementioned going-out-and-dancing days (*sniff*) that someone borrowed last year. A large sports bag which I have lugged around more train stations than I care to remember while on weekend jaunts to see various internet people. I could even run up and down stairs while carrying it and never missed a connection...
*sniff*
*sneezes from dust*

This didn't put me in the right frame of mind to hit The Paperwork.

There was a period, when I first got sick, where I didn't really realise what was going on and thought I just had a couple of nasty bugs and would get over it. This wasn't a happy time. When I look back now, I realise I was being ridiculous, but at the time, I thought I was making sense.

So there were a number of incidents to do with me fainting but refusing to go to hospital because I was running late for work and had clients to see and "it's just a bit of flu or something". There were also a number of times when I walked into the building where I worked and someone from another organisation took one look at me and pretty much forcibly ushered me into their car and drove me straight back home.

In these circumstances, paperwork wasn't top of my priorities. I would come in the front door, pick up my post, go up the stairs to my flat, and lie down on my bed and go to sleep, complete with my handful of post, my glasses, my coat, my bag, my shoes, everything. Stuff on the bed got pushed off the bed, and eventually underneath it.

Which is why today's discoveries were lurking there to upset me. I'm not sure what's worse. There's the stuff I do remember - handouts from work-based training I did and meetings I went to, printouts of emails, a magazine, some train tickets - which remind me of the life I used to have. And then, there's the stuff I don't remember, and it scares me a little that I don't remember it. Like, a tesco clubcard and two key fobs, still stuck to the letter they came with. The name is mine, the address is here, but I can't remember applying for it - and how can I have been too knackered to sign the card and stick it in my purse? Or an invite to a party I'm fairly certain I didn't go to. I hope I at least phoned to apologise.

I'm feeling very angry and I can't put my finger on exactly why. It's not that I want my old life back. I mean, it would be nice to not be in pain, or confined to bed so much (and it would be nice to be a size 10 again). But if giving up the pain and malaise (and excess flab) also meant giving up the friends I've made, the relationship with Steve, the steadiness I've acquired, and picking up at age 23 again, I would not do it.

I think the anger might be because the shift in pace and circumstances was not my choice. I didn't want to become unemployed, and I didn't "deserve" to get ill or do anything that made me ill. It was all completely out of my control and I hate that.

Carrying on from that, I think it's also affected by Sister Dearest. She's currently the same age I was when it all fell apart, and she *is* in control of her life, she *has* chosen to leave her job, she actively says and does things to steer her life in the direction she *wants* it to go.

Nah. I think it's mostly because I have done too much physically today. Also I have been inhaling two-year-old dust and that can't be good for you. Here's hoping I feel perkier tomorrow and that Sister Dearest enjoys my castoffs.

Oh, and good news. I have a routine doctor's appointment coming up in two weeks, and I've just found out that it will be with my actual proper GP, the lovely Dr W, rather than the smegging bloody Locum who cocked up my DLA. Hurrah!

Not what I've expected

After a lovely week, as detailed in my last post, I waved goodbye to Steve (gone home to do more studying) and spent Sunday afternoon sat on the front doorstep with my neighbour S (of mousey-fire fame) with a nice cool drink watching the carnival go by.

The carnival was headed by a fire engine. This caused a certain amount of embarassment on S's part. She has assured me it won't happen again.

It was a very strange carnival. There would be, for example, a samba band playing really upbeat, carnival-ey music, and a group of a dozen or so enthusiastic dancers in bright costumes with lots of feathers, jumping and clapping like they meant it, and then a decorated float with non-dancers giving it a good effort and having a good time... and then a trailer with a boring, unadorned logo on each side for a local business, no more than a mobile advertisement and not a very good one at that, followed by a half-arsed effort at a float with a bunch of people in almost-fancy-dress sitting on it chatting or worse yet, looking bored. In particular, the Lowestoft Sea Cadets were the most depressed, bored-looking, unhappy group of people I have ever laid eyes upon even outside of a carnival setting. But then, after the scowls and immobile people, would be another bunch who were enjoying it. I would go so far as to say it was a bipolar carnival. Very confusing.

By 5pm, the roads were reopened and the drizzle had started. I looked forward to having an early night, and then on Monday, getting things straightened out at the flat - you know, getting some food shopping done, doing some dishes, attending to Mt Laundry and the suchlike.

This sterling plan was knocked right off course when I woke up on Monday with what I can only describe as a violent stomach upset. At first it wasn't too awful. There have to be some bonuses to being long-term ill, and one of them is that you're used to feeling awful. So if you're having a good spell, and then get a little short-term illness, you can deal with the feeling-awful-ness easier than those around you, because it's not much worse than your usual kind of Bad Day, even if it does take a little longer to shake off.

By 11am, however, I was full-on sweating, shivering, and curled up on the sofa cuddling a big bowl. I was trying to have little sips of water to rehydrate, but it was an effort to keep them down. I wanted some painkillers, but keeping those inside me was out of the question. This was the point at which S turned up at my door. She'd not had a good night herself - she'd been at the hospital for reasons of her own - but as soon as she saw the state I was in, she started trying to look after me, making sure I had a drink, asking if I needed anything, offering to go to the shops, asking if I wanted her to hang about or if I'd rather be left to it. After a few minutes she went home, having promised to check on me again in the afternoon.

To be totally honest, I wasn't expecting her to come back in the afternoon. S often has trouble with what day it is and with remembering what she should be doing if it isn't written down. But she did. She even remembered that I'd had no cold drinks in the flat and had brought me a bottle of squash "in case you want something that isn't plain water". I think I owe her some chocolate.

After about 4pm I started to pick up a bit. I spent an hour eating a slice of toast and then, joy of joys, I had a painkiller. The next slice of toast took just half an hour, and then I microwaved some rice for dinner.

Today I'm very nearly back to normal. Well, normal by my standards. S came up again this afternoon and we were each relieved to see that the other was looking considerably better. I've done most of my washing-up and hopefully tomorrow I'll get some shopping done.

I've also done quite a lot of knitting today. I am very glad that I have the bits I need to work on the jumper for Littlun because I have run up against an obstacle with the sock. I'll consult mum on the matter tomorrow but I don't know if she can do socks or not... here's what's happening. I've gone round and round and round, 60sts divided between 3 needles, first ribbing, and then plain knit-every-round for the ankle part of the sock (so it looks the same as stocking stitch, knit a row, purl a row, on regular knitting needles). Ok? This is boring simple easy plain sock. Now: how do I do this next bit?

K15 and turn
If I've got this right, I start from my marker for "beginning of round", and knit 15 sts, and then, I turn my knitting around, so that the last stitch I completed, the 15th knit stitch I just did, is now in my left hand?)

1st Row: Slip first st, P29, turn (30sts on this needle) Slide other 30sts onto spare needles.
If I've got this right, this means that I should be looking at the 15 knit stitches I just did, and going back across them (as if I was doing back-and-forth knitting rather than round-and-round knitting). I should slip the first one and purl the next 14. I should then continue purling, onto the same needle, the next 15 stitches. The other 30 stitches, the ones I haven't done anything with, these get put onto the other needles to keep them safe while I'm buggering about with just these 30?

What do I do with my cute little marker that tells me where the beginning of the round is? Do I keep it where it is, or discard it, or put it somewhere else?

*sigh* I speak more Knittingese than I did six months ago, but really, I sometimes wonder if these patterns will ever cease to confuse the hell out of me.

Cooking

I got myself a new cookery book the other day. It's called Just like mother used to make and it's by a guy called Tom Norrington-Davies. On the back are a couple of quotes from reviews, and the one from The Times says that "the recipes are simple to follow and comfortingly delicious to eat." Marvellous, thunked Mary. This is the book I need.

Oh dear. Oh dear oh dear.

I should have looked at the name, really. This book is written by a man, who has access to many varied London shops, and above all, can afford a dishwasher. This is speculation, of course, but if he washes all his own dishes I will be very surprised.

I'm on page 82 now and I am stunned with the amount of faffery this guy suggests. It's the sort of cooking that's probably fun a couple of times a week if you're the sort of person who enjoys cooking and gets a kick out of accomplishing a meal (and you have a dishwasher).

A particular area where Tom and I have fallen out is over the issue of soup. He describes several "comfort soups" which according to him are "low maintenance" and "great food for those times when we are under the weather." Under the weather, that's me, let's take a look. Tomato soup, great.

First, he wants me to peel and chop onions, garlic (actually this should be "bruised" whatever the hell that means), a leek, and some carrots. Washing-up count so far, at least one sharp knife and chopping board, and a bowl to put the chopped veg in, plus it's taken me four hours due to keeping needing to sit down, the odds are I've cut my fingers, and we've not even got to the recipe instructions yet. You're then meant to stand at the cooker for ten minutes "keeping an eye on" the veg while they sweat in a little oil in a covered saucepan (washing-up count: saucepan, lid, wooden spoon). Next, we add some sugar and some tinned tomatoes (tinned? Tom, I'm shocked, you mean I don't have to grow them myself?), whack the heat up, and stand at the cooker for at least five minutes, "stirring constantly". Add some water (he prefers stock but he can stick that up his jumper) and allow to simmer, uncovered, for about an hour, because I always wanted to turn my flat into a tomato-scented sauna. Finally, we chuck it through the blender (washing up count: one blender which he doesn't tell you must be washed before the soup sets on the blades - handwashing blenders is Not Good) and add milk, salt and faff to taste. Serve (washing up count: bowl, spoon, and he also wants nice fresh bread but we're just not going to go there).

Total washing-up: two bowls, one spoon, one wooden spoon, blender, saucepan and lid, sharp knife(s), chopping board(s), and I bet the work surfaces and cooker hob got splattered too.

Tom. Mate. If you ever feel really under the weather, here's what you do.

Get the bowl you intend to eat from, the spoon you intend to eat with, a tin-opener (I know you have one because of those tinned tomatoes) and a can of Heinz Cream of Tomato soup. Open the can and empty it into the bowl. Put the bowl into the microwave and nuke it for one minute. During this minute, assuming you recycle, peel the label off the can and rinse the can under the tap before chucking it in the appropriate bin. Rinse the tin-opener too and leave it on the draining board to air-dry. Get the soup from the microwave, stir it with the spoon, and then put it back in for another minute. Have a little sit-down. The microwave will beep but don't get excited, just in your own time get up and get the soup. The bowl will be hot, be careful. Give it another stir and eat. If it makes you feel better you can put a sprig of freshly plucked basil on top, or an artistic little swirl of cream.

Total washing-up: one bowl, one spoon.

I'm not even going to talk about what he expects me to do about mashed potatoes. Still, I have another 106 pages to read and hopefully there will be some genuinely simple and easy thing that I can serve up with microwave mash and instant gravy.

I don't want to be a domestic goddess, I just want simple easy food!

Internet Addiction?

On May 9th I mentioned a number of half-written posts I had and asked which ones I should make into full posts. The answer seemed to be "all of them, why not?" so here's the first. I'm not entirely happy with it, but it's the most complete one of the lot, and I'm not having a great time for concentration at the moment so bah, it'll do.


While aimlessly reading through the BBC Magazine Monitor's "100 things we didn't know last year", I came across this article.

Apparently more than one in eight adults in the (US) study were internet addicts. Signs of addiction include:
- Finding it hard to stay away from the Internet for several days at a time
- Often staying online longer than intended
- Having seen a need "at some point" to cut down on Internet use
- Attempting to conceal Internet use
- Using the Internet to escape problems or "relieve negative mood"
- Relationships suffering from excessive Internet use

Lists like this cover most forms of addiction. Just read the list above substituting "alcohol" or "heroin" or "gambling" or "bingeing on chocolate" for "Internet".

For the record, I freely admit to finding it hard to stay away from the internet for more than a day or two, and I come online to "relieve negative mood" - it's something I enjoy doing, in the same way as I enjoy a nice bath, or a cuppa with a friend. I'm "online" most of the time, most days, but while the computer and msn and so on are "online" I'm quite probably curled up on the sofa snoozing, or filling out a form, or tidying up around the flat. I do my computer-stuff in many short bursts rather than one long stint. I've never tried to conceal my usage, and I'm pretty certain my relationships haven't suffered - quite the opposite! I'm hazy on the idea of "non-essential use". If I order groceries online because it's easier for me than going to a shop, is that essential or not? If Steve plays an online game for half an hour to relax after a crappy day at work, is his relaxation essential? Is reading the news essential? Is contact with long-distance relatives essential?

Even if we get an idea of what is essential use and what is non-essential, but reasonable use, we then still end up on the same old cycle of trying to figure out at which point the use is defined as an addiction. Where's the line that makes it a problem, or possibly even a pathology?

It may partly depend on what the activity is. I know many people who like to read books. They wouldn't want to spend several days without reading a book. They become immersed in a book at bedtime and then realise it's 4am and they've been reading much longer than intended. They have realised they have more books than shelf-space and decided to get rid of a few. They read books to "escape from reality" or because it relaxes them, or cheers them up. But no one would dream of telling them they are addicts, or that they have a problem, or that they must empty their houses of books and from now on they can only read road signs. You just don't do that with Reading Books. Is it reasonable to do it with Using the Internet? Writing diaries is another one. If Samuel Pepys was alive today and writing his memoirs in daily blog form, would he be castigated as an internet addict with "compulsive behaviour issues" as these researchers put it?

It also depends to what extent the activity is taken. For instance, it is normal, even desirable behaviour to keep one's home clean. I also know people who like to take pride in keeping their houses neat and clean. Rather than "oh no, housework, it's got to be done but I wish I didn't have to do it," they actually quite enjoy tidying a room, putting things in the proper places, polishing the surfaces, fluffing the cushions and looking at the results with a sense of deep satisfaction. Then there are those who feel distinctly uncomfortable in an untidy room - people who come to your house for a cup of tea and can't help themselves from lining up your remote controls in order of size on the coffee table, or even say "I'll just rinse my cup out," and then start washing up your breakfast things from that morning. And then there are those who compulsively and constantly deep-clean everything. A friend of mine got burns on her legs at someone's house because she hadn't been warned to wipe the bleach off the toilet seat before sitting down - the householder in question reapplied the bleach several times a day. Few people would argue a statement that this last example shows signs of a problem. But at which point along the spectrum does the "problem" status apply?

I think perhaps the line between a hobby or interest, and an addiction, is when it has a real impact on other people. I'm having trouble imagining someone shoplifting their food and mugging people so that they can pay their line rental or get another couple of gig of bandwidth... but I can, for instance, imagine a child with a full nappy and an empty bottle sticking their fingers in sockets while their parent is at the other end of the house having "just one more f5", so maybe internet addiction isn't such an outlandish concept.

Hopefully someone will prod me before I get too sucked in.

Haute Cuisine

This evening for dinner Steve and I cooked pork chops, mash, and bacon. The idea is that I'm the one who knows how to cook stuff, but he's the one who's able to safely get stuff out of the oven, or turn off the gas and sort things out if I start fitting or if I collapse, that kind of thing. So it's a team effort, but he tends to regard it as me cooking.

So anyway, this meal. There are a number of cooking things I regularly cheat with to save time, energy or washing up - instant gravy, pre-peeled/chopped veg, that sort of thing - and this meal was no exception. The mash was Smash, and the bacon was pre-diced. He mixed the Smash, I fried the bacon, we mixed the two together, huzzah.

The pork chops, however, I did from scratch the way my mum used to, with a certain amount of various seasonings, an eggy-breadcrumby coating, pan-fried and then baked for a while covered over with foil. Obviously mine are never as good as my mum's, but then nothing is as good as your own mother's home cooking. They're perfectly passable though and might well fool the casual observer.

We sat down to eat, and as he often does, Steve started enthusing about the meal. "Mmmm, this is fantastic. Thankyou darling, this is gorgeous. We must never feed my dad this, he wouldn't want to leave," and so on. Of course, I asked what it was in particular he liked, for future reference... of course, he was on about the bacon-y Smash.

Activity, cost, and Spoon Theory

One of the trickiest things to keep on top of is calculating the costs of each activity I do, prioritising the activity, and figuring out if I can do it or not.

The beginning and end of the spectrum is easy. There is "rest", which is lying down or sitting very comfortably, in a warm, safe and quiet place, with my eyes shut and no distractions. It may or may not involve actually falling asleep, but the important aspect is making the time as uneventful as possible for both my brain and my body. Rest helps me slowly gain some energy.

At the other end is "impossible activity". A few years ago it was perfectly feasible for me to rollerblade along the seafront with an ice-cream in one hand and be chatting on my mobile phone in the other. These days, I simply do not have the capacity to do that, which is something I've come to terms with. It was fun, but hardly a life skill.

The bits between "rest" and "impossible" are tricky though, and they vary for every person with ME/CFS and similar illnesses. For everything I do, I have to think about how much it will cost me, and whether that will prevent me from doing something else that may be more important or more enjoyable.

Let's take reading as an example. I've enjoyed reading from a very early age and it used to be one of my top things to do to relax. Now I can't read any whole book at one sitting any more, fair enough, but there's more to it than that. These days, reading isn't just reading.
Low-cost: Reading a book from my personal collection which I have read many, many times before.
Medium-cost: Reading a book I have not read before, but by an author I am familiar with and whose style of writing flows well for me.
High-cost: Reading a book by an author who is new to me.
Near-impossible: Reading a non-fiction book which requires the reader to keep up with concepts that may be new to them. For instance, I've had The Science Of Discworld for about a year and I am still less than halfway through it.

The same sort of thing applies to everything I do during a day, fun or not, essential or not, productive or not. It applies to getting up and having a bath and getting dressed and washing my dishes and buying a pint of milk, and it also applies to knitting, using the computer, shopping (yes, even online), watching a TV programme, cooking, seeing friends, chatting on the phone or playing a game.

Some people have the idea that anyone who is off work long-term must be sitting around all day doing the sort of thing they would love to do if only they weren't at work. It's not the case. Not only would I need to be having a good day to attempt half the "day off" things I used to, but as soon as we've factored in stuff like housework, forms for several different benefits, and family commitments, it's an almighty mess.

The best explanation I have ever encountered for this is Spoon Theory. I really recomend you click that link, but if you don't want to, here's the summary:

People with illnesses like mine start each day with a limited number of energy credits, represented by a handful of spoons. Some days it's a good day and you have more spoons than usual (although still not as many as a healthy person might) and some days it's a bad day and you've only got half the spoons you're used to having. Doing things costs you spoons. Resting may make you a spoon or two if you're lucky, but it's not guaranteed. If you spend all your spoons by lunchtime then that's just tough if there's something else you want or need to do later in the day.

Physically do this. Get your handful of spoons (or pens, or knitting needles, or whatever - just one handful though!) and go through your day. Waking up and forcing yourself out of bed? Spoon. Having a bath? Spoon. Washing your hair as well? Another spoon. Getting dressed? Spoon.

Of course, this is what happens to healthy people when they get a bad cold or something. They drag themselves into work wearing an unironed shirt and brushed but not styled hair, get frustrated because they can see that they are performing at a level of less than 100% and are making mistakes, go home, and collapse into bed with a cup of lemsip and some takeaway food. And that's okay, because for a week while you have a cold, you can let things slide - the washing up doesn't HAVE to all be done every day, you can catch up on the laundry when you feel a bit better, your friends will understand that you've had to cancel on a planned get-together, you'll absorb the £5 charge for late payment of a bill in order to not have to worry about getting to the bank this week.

Chronic illness is different. You can't simply skip the vacuuming for three years. Your friends will stop inviting and including you if you never join in, and as a human being you need some social contact. The clean clothes in your wardrobe will all be used up after a few weeks. If you don't get yourself into town, go to the bank and pay your bills, you go past Final Demands and bank charges and into the realms of baliffs at the door. You have to stay on top of everything that needs doing.

So you have to get on, and calculate every activity every day. You have to balance and you have to decide if the fact you have no fresh clothes to wear is more or less important than the fact your cups and dishes have almost invented the wheel. You have to decide whether to read a few pages of a new, interesting book, or to read a familiar book and thus be able to chat to someone on the phone for 15 minutes. You have to be able to tell your friends that you don't have the time or energy to see them, because you've got to use all of that day's spoons on eating three basic meals and filling in a couple more pages on a poxy horrible benefits form.

I can deal with the pain, and I can deal with injuring myself when I fall over, and I can deal with the poor sleep and nausea and fits and all these physical things. But I have real trouble keeping positive while dealing with the constant comparing and choosing and juggling and never being able to forget for even a day about being ill.

And THEN some bugger tells you that you'd feel ever so much better if you just went jogging for an hour each morning... I think that's another post though.

Roomba

I've been giving serious consideration to purchasing a Roomba. On the one hand, it's incredibly expensive for a vacuum cleaner - my current vacuum cleaner cost all of about £30 whereas these seem to be over £150 as a minimum. On the other hand, my current vacuum cleaner doesn't actually get used and my carpets could really do with less dirt. I don't have the capacity for pushing a hoover around the place but I can push buttons and use remote controls like a champion! And lo, for there would be another notch less of feeling bad about my housekeeping.

I mentioned these thoughts on the phone to Steve. He was enthusiastic, but his reasons were more along these lines. I began from a viewpoint of "do what you want to it as long as it still cleans the room" but I found myself having to revise that policy when he started talking about fixing scythes to it to make it double as a home security system...

Do any readers have experience of roombas, or similar things?