Wednesday, March 28, 2007

Still Here

My levels of energy, pain and ability to concentrate have been all over the place the last few days and I don't know if I'm coming or going half the time. However, I am happy to announce that the knitting continues to go well. Having finished the scarf for Dominocat, I started looking for another project. A look for basic knitting patterns or learner's patterns online revealed that I could (a) make another 6ft of garter-stitch scarf or (b) attempt to decipher a "pattern" which looked like someone had randomly squashed their hand onto their keyboard, and after decipheration, involved such voodoo concepts as "cabling" and "ribbing" which I have no concept of.

This led to a bit of "oh my god, I'll never be able to do this..." but that was over pretty quickly as with the help of the lovely Jiva, I determined my plan of action thusly:
(a) get a book about learning to knit, and follow its handy instructions bit by bit until on top of basic stitches.
(b) cast on another scarf with some wool I already had, to give me something to work on and that I would be able to pick up and know I could do it easily, even when frustrated at the learning-bits going difficult-ly.

(forgive my vocabulary today. It's all there somewhere.)

So, I'm working on it, I have nailed garter stitch aka knit stitch, and also purling, and also stocking stitch where you knit stitch a row and then purl stitch a row. Next in my handy book is increasing and decreasing the number of stitches on a row, which should be entertaining. And then that's it for the book.

God knows what happens next.

Monday, March 19, 2007

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.

Saturday, March 17, 2007

Comic Relief

I never thought Tony Blair would make me smile, but...

Also, if you like blogs, you'll probably enjoy this book, with all profits going to Comic Relief.

Wednesday, March 14, 2007

Halfway there

halfway there
Originally uploaded by girl_of_bats.
As you can see in the picture, the scarf is coming along nicely - I am now about 10 or 15 rows into the second ball of wool.

Thanks to everyone who gave me advice about changing over from the end of the 1st ball of wool to the beginning of the 2nd. The knot is nowhere near as distressingly huge as I feared, and the advice to just knit a couple of rows with the 2nd ball before securing the knot was good - it's pretty inobtrusive. I do, however, need to find out what the best thing is to do with those end-y-bits, as a scarf "pattern" this simple doesn't really have a Wrong Side where I can hide them. Should I snip them off, or sew them into the edges, or across the width of the scarf, or what?

I'm also open to suggestions about what I should try to knit next...

(edited 6th April to add tags.)

Monday, March 12, 2007

In which I am an Unethical Cowbag

I've just lied my arse off about the nature of my disability to a couple of salespeople and I feel really very guilty about having done it, so I thought I'd confess to The Internet (iGod isn't as satisfying as it once was).

I was coming up for my next dose of painkillers when there was a tap at the flat door. So I hauled myself up to answer it. Two people, a man and a woman, in suits, were standing there. We got as far as "Hi, you're Mary, yes? I'm Mark and this is..." before my legs gave way and I slid halfway down the wall. And it's impressive that I lasted that long.

There's then a short piece of confusion. The man asked me if I should be sitting down and I agreed and then somehow we were all in my flat. I remember inviting them to sit down because that's what you do when people are in your flat, and then everyone standing in confusion because there were three of us and only one seat available (the others being taken up with my laptop, and the cutlery tray from the kitchen drawer that broke a couple of weeks back - really must get that fixed). They told me to sit down, which I happily did, and as my head got back on track the man knelt on the floor by the sofa and asked if I was okay.

Then they introduced themselves again and that is when I realised they were salespeople. My first thought was "how come there are salespeople inside my flat?" followed by "oh bums. Salespeople aren't going to leave until they've got my signature on something. I can't stand up, so I can't shoo them out, and I don't have the oomph right now to be terribly over-assertive..."

As they opened their spiel I couldn't think of anything apart from how to get them to Go Away. I don't care if I could save up to 10% a month on my electricity bills. A direct debit goes out every month to cover my electricity, and if I'm paying a couple of quid more than I absolutely need to, well, that's the price I pay for not having to muck about and try to understand deals and shift suppliers and adjust payments and so on, and the state my brain is in that's a price worth paying for things to carry on smoothly. I was trying to work out how to explain this to them when it hit me that this might, after all, be a way out.

"Can I cut you off for a moment?" I said. "As you can see, I'm in a bit of a state. I have long-term cognitive difficulties so I'm not going to be able to take in half of what you say." So far so true. Then the lies spilled forth. "I can't sign anything, but if you can leave me, like, a leaflet or something, then I can discuss it next time I see my advocate and take it from there." That's tosh. I don't have an advocate, unless you count my mum. I'm perfectly capable of signing things and I don't have any alternate signatorys on my bank account or anything like that. And even if I did, I very much doubt I would waste an advocate's time trying to change electricity suppliers.

It worked. The young man told me they didn't have any leaflets, but if I could show him my last electricity bill, he could write on it exactly what the difference would be so that I could show "my advocate". As it happened, my latest electricity bill was lying on the table, so I gave it to him and he wrote down his phone number (a regular mobile phone number, which I found odd) and the price comparisons between my current supplier and their company. They said I should tell my advocate that with my current supplier I was getting the worst deal possible and that it was really quite important to sort it out. After a bit more of this, to make sure the message had sunk in, they left, thank god, and I locked the flat door behind them.

I really hate playing the disability card and I'm really bothered about having lied. I phoned Steve, but he was more upset about me having let them into the flat in the first place, which is understandable, but it's not like they'd come to rape, mug and murder me. What bugs me most is that not only did I use my disability as an excuse, but I also painted myself as being less capable than I actually am. I think I had a good reason, and it's not something I intend to make a habit of, but I feel very unhappy to have done it at all.

Sunday, March 11, 2007

Knitting seems to work

My Knitting
Originally uploaded by girl_of_bats.
An eventful and highly enjoyable day yesterday. I had arranged to go over to Norwich and meet a friend to go shopping and generally spend a bit of time together.

At about 9am, the Scarf In A Bag kit mentioned in my previous post arrived. It wasn't precisely what I was expecting - I had an idea in my head of there being a cheap but durable bag, with handles, maybe with a zip, which I could use to carry my knitting around. It turned out to be more "Scarf In A Plastic Packet". Still, the plastic packet did contain everything it was supposed to, so I decided that I would take it with me and learn how to knit while on the train.

So I did, as you can see. There were a couple of false starts while I was trying to cast on, and when I finally got my fingers and wool and needle in the right places and made the first stitch, then I couldn't remember what I'd done, and needed several more attempts at the next stitch. But after that it was really easy, just repeated the same actions until I had the right number of stitches to be getting on with.

The "pattern" for the scarf is not exciting. You just keep going and going and going with the same basic stitch until you run out of wool. Sounds good to me, it makes sense that before I try anything else I should be able to do the basic stitches in my sleep.

Mind you, it's still made a good attempt to confuse.

As a non-knitter it took a while to decipher this:

"Work in garter stitch (every row knit), noting first row is a WS row, until you have sufficient yarn remaining of the 2nd ball to enable you to cast off, ending with RS facing for next row. Cast off knitways."

Knitways? WS? RS facing? Did I neglect to buy the Collins English/Knitterish Dictionary?

There's also absolutely no indication, anywhere, of the correct manner in which to change from the end of the first ball of wool, to the beginning of the second. The obvious solution seems to be to tie the two together, but I don't want to make a big ugly knot in the middle of the scarf, and given that I was never a Girl Scout it is likely that such a knot, tied by me, would lead to an extremely weak point in the scarf, which would eventually undo itself and unravel the entire thing.

That's odd, because the instructions and diagrams for Casting On, Knit Stitch, and Casting Off are really, really clear and simple and easy to understand.

Anyway, I had quite a few respectable rows done (and still the same number of stitches as I started with) by the time the train pulled into Norwich.

Once again, I'd like to praise the wonderful service that is Norwich Shopmobility at Chapefield. Friendly, helpful, efficient, and two minutes and £1.50 later I was impressing my friend with my amazing driving skills. It was nice to be going shopping with a girly friend - Pip is wonderful, but a man in his late 20s fielding an energetic two year old is not an ideal partner for a disabled woman who wants to get clothes.

I wasn't feeling well enough to be able to try on any skirts or trousers, but I tried on and bought a couple of tops which I really liked. After a while I couldn't get on and off the scooter any more to go into shops, so I sat in Castle Mall enjoying a smoothie (banana and strawberry, mmmm!) and looking after the bags while my friend went in and out of shops. Then we went to the train station to have a cuppa and fill time until the next train home. It was marvellous to have a giggle and a chat, and while my exhaustedness meant I was glad to get on the train to head home, I did feel sorry that I couldn't stick around longer, get dinner and stuff.

Getting from my flat to Lowestoft train station is easy. You go straight downhill towards the river, along with the flow of the one-way northbound traffic, cross the bridge, and you're pretty much there. Taxi fare about £4. Getting back, from the train station to my flat, is another matter, particularly since the corresponding one-way road for southbound traffic is currently closed, along with many others. Last time I had to get a taxi home from the north side of the bridge (just over a week ago), what should have been about a £5 fare was more like £9, and it wasn't because the taxi driver was messing about - all the roads we wanted were closed.

But, it's not like I have a lot of choice in the matter. So when the train arrived at Lowestoft, I got in a cab, told the driver where I wanted to go, and when he pulled a face, explained that I knew the roads were snarled up and it would cost over the odds and that it wasn't important, I trusted whatever route he felt was best. At that point he amazed me by saying "Call it a fiver? That's about what it would normally cost, after all." and he turned the meter off. I felt kind of bad about it, but apparently a lot of the cab drivers are getting rather upset about having to effectively overcharge people. So I thanked him, and was happy.

Needless to say, today I am in a total state. Leaving my bed only to go to the loo or get a drink, and that crawling, crying in the half-hour before the Next Dose of painkillers, the lot. It's taken several hours to compose this blog entry. But it was really really worth it, because I had a great day.

Edited a couple of minutes after posting to correct a bit of grammar and add tags.

Monday, March 05, 2007


Several of my online friends get a lot of enjoyment out of knitting. Most notable of these is probably Dominocat whose projects often leave me in awe. Plus, I am the honoured owner of one of those projects which is amazing.

I've considered doing knitting on many occasions, but have so far always rejected it on the basis that I am simply not creative. In "art" at school, when you were given some paper and some pencils/paints/whatever and told to create a pretty picture, I was the kid who sat there in front of a blank sheet of paper with a dopey expression. Eventually the teacher would suggest an object, and I would do my best to draw it accurately, with varying results. In later years when it was suggested that we might like to paint "interpretations" or "feelings" I was even more at sea. It made no sense to me whatsoever and it was with relief that I entered my GCSE years and was able to do straightforward academic subjects.

However, of late it has occurred to me that while I'm not creative, I am good at following instructions. I started by making a couple of soft toys from kits, like this badger. Then I picked up one of these knitting bees for something to do with my hands when I can't sleep, can't concentrate, and can't move about. I've now created several yards of bee-poo, as Steve insists on calling it, and wanted to try something just a smidgen more challenging, not to mention useful.

So I have ordered a scarf in a bag kit, containing all the necessaries - beginner's instructions, needles, and wool. The order should be processed by the end of the week and then the kit should be here about a week after that. An actual scarf may or may not occur, we shall have to see, but I'm taking the plunge.

Should it all go to plan, I will then be able to start terrifying Steve by knitting baby-clothes... ;)

Saturday, March 03, 2007


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?

Thursday, March 01, 2007

One Of Those Days

I've been a bit flattened by the Birthday Weekend, but yesterday (Wednesday) I had a productive morning. Then mum and Chris had gone out for the day and asked me to let their dog out at lunchtime, so at about 1pm I went to their house (only two blocks away), let the dog out, had a rest, let the dog back in, and went to the shop for some bread on my way home. I had a bit more trouble than usual getting up the stairs to the flat, and once I was in I called Steve to warn him that I was going to be asleep all afternoon and went to bed.

Woken up by the phone ringing, it was mum. Their car had broken down. Their breakdown cover would relay them and the car either home, or to a garage of their choice. Chris's preferred garage is quite a distance from home, so they figured that it would be easier use the cover to get them and the car to the garage and find another way to get them from the garage to home, than to use the cover to get them and the car home and then have to find another way to get the broken down car from home to the garage. My job was to go to their house, dig out their address book, and text them with the number of a friend who lived in that area and might be able to give them a lift home.

Parents stranded in the wilds of East Anglia is one of those situations where "do I have the energy for this?" doesn't really come into it. I was kind of wiped out, and for ten or fifteen miles I'd have told them to call a taxi and I would cover it, but the actual distance according to Google Maps is just over FIFTY miles, which is not taxi territory. So I warned them I might take a while, put on my coat and shoes, and began to shuffle.

Halfway to their house, a group of kids playing in the street with a football came careering towards me. No problem, I just paused and held onto a handy wall... then one of the kids who wasn't in the scrum yelled "MIND THE OLD LADY!"

I looked round.

They meant me.

I was mortified.

Anyway, got to the house, found the number, texted it to mum, let the dog out again, and curled up on the sofa to try and finish my nap. Woke up, took painkillers, planned to head home once they were working. So far so good - until The Sister got home from work. I've mentioned her before. Nice enough girl, although of course being siblings we regularly fight like cat and dog and have phases of Not Speaking to each other, but Oh Dear God does she talk. On and on and on and on, well I can deal with that, but also high-pitched, too fast, repeats herself, and never ever lets anyone else get a word in. Plus, she had had a bad day at work. I nodded and smiled and prayed for deliverance. After half an hour an absolutely shattered mum and Chris wandered in, and I could leave the room. We ordered some takeaway and then I think mum persuaded her to do a bit of work on her job application so she was quiet for a bit, but soon she was talking about what she was writing rather than writing it. Aargh.

We all had dinner and then mum offered to walk me home. Getting up the stairs took the last little bit out of me. I took my coat and shoes off, stood up to get ready for bed, and lurched into the bathroom just in time to throw up. Lovely. No one else is feeling ill so it's not food poisoning and it's unlikely to be a bug. The only theory Steve and I can come up with is that it's my system telling me to bloody well stop punishing it, on the basis that last time I was throwing up for no reason (so that's not counting little teeny bits when I'm extra-dizzy, heat exhaustion, or that bit of food poisoning last year) was when I first got ill and was pushing it by keeping going to work. So today I'm in bed, no ifs, buts, or maybes, and having as many little naps as I can. It's helping.

While I was final-editing this, mum rang. Turns out that as well as their car breaking down and my sister's bad day and me being sick, the people they had gone to meet, on their way home, got stuck in traffic and then something hit and shattered their windscreen. Not a good day for anyone!