Friday, June 30, 2006

Job Offer

Last night Steve and I were at a focus group. There's a local cafe we like to go to, and the owner, David, is considering opening it in the evenings as a kind of wine bar or similar, and wanted to get ideas from people in our age group about what we want from a night out, what we don't want, how viable the concept would be and so on.

He's a really nice chap, so when he asked us if we'd come along, we agreed immediately - me for definite and Steve if he was out of work early enough. The additional promise of pizza, drinks and cake being provided had nothing to do with it, I swear.

The focus group itself went well. I think David got what he wanted out of it, and the participants managed a lot of intelligent but structured discussion. After about an hour I had to pull my chair away from the table and have some painkillers and sit with my head between my knees for a bit, doing breathing techniques, but after ten minutes or so I was able to come back and join in again, although I was definitely a little spaced.

Which was why I thought I might have been imagining it when David offered me a job.

Except everyone was looking at me. And I had to turn it down. I mean, can you imagine me waitressing?

"Certainly sir, one large coffee coming right up. Could you please come through to the kitchen and carry it through for me? Thank you so much."

"Yes madam, we do a range of hot and cold foods, but if you want something hot would you mind supervising me using the oven? That's awfully kind of you."

"Do take a seat, I'll come and get your order just as soon as I've managed to pick myself up off the floor..."

It was by quoting these scenarios with a smile on my face that I gently turned David's offer down. What had happened is that with my stick being on the floor, and with me participating in discussion with a group that included his other young staff members, he saw how I would fit in with the group and completely forgot about my physical limitations.

Can't see it working myself. And those little scenarios are even assuming I managed - each day I was due to work rather than when I happen to wake up having a good day - to get myself washed and brushed and made-up and dressed in an ironed uniform, get myself into town on time, and then work for a full shift. Even the taxis into town and back are £7 each way, I'd have to be able to work a minimum 3-hour shift to even turn a profit. Riding the scooter into town is for when I have lots and lots of time.

Thing is, it's one thing to resign yourself to not being able to work and therefore not seek work, and quite another to be offered a job and have to turn it down. Not a crappy job either - if I was healthy I would be happy to work for David as a waitress. Probably while looking for something that was more "career" than "job", but nevertheless, it would be preferable to being on the dole, or working somewhere soulless like McDonalds.

Tuesday, June 27, 2006


Meet George.

George is a coconut.

I don't like coconut. Steve doesn't like coconut. One might wonder, therefore, why we bought a coconut on Monday night in Tescos.

well, he looked cute. And he was only 38p. And we shall love him and cuddle him and call him George.

(click the picture for more photos)


modes of transportation
Originally uploaded by girl_of_bats.
On Monday I became properly independently mobile here at Steve's for the first time.

It's a very affluent area, and one of the symptoms of this seems to be that local shops are few and far between with few or no bus stops, as everyone has at least one car. The nearest local little shop of any description is a good fifteen minutes walk each way, even for a healthy person, which is beyond my capability. Therefore when I have been staying with Steve, I haven't so much as been able to go out for a pint of milk or a bar of chocolate, even on a good day.

However, Leamington does have a Shopmobility scheme, who will basically hire me a mid-range mobility scooter for a week for a sum of money roughly equal to my weekly high-rate mobility DLA, which seems perfectly fair to me! They spent some time doing a little training course with me, reversing round cones and all sorts, and after this week is up I can either return the scooter, give up and say goodbye; return the scooter and buy a shiny new one of my own; or not return the scooter, give them more money, and extend the hire for another week/month/whatever.

So far I have:
Driven home from the town centre (took nearly an hour)
Gone to the local shops to buy some things for dinner
Gone to post a letter
Had an explore around the district

And I plan to:
Go to the library
Go get a massage
Go for a drink
Have a haircut
Go to the shops again
Explore some more

I'm very definitely considering getting a Cadiz which is a couple of levels up from what I've got on rental at the moment. It has suspension (which after my excursions so far is a BIG selling point), a taller, comfier seat, goes up to twice as fast, and has comfier handles. I had a go on the showroom model at ShopMobility. There's a load more features too, indicator lights and stuff like that, but it's mostly faff - what I've listed is the main differences that make it worth paying more.

Scooters are expensive things, even a cheapey McCheap one costs several hundred pounds and one that is mid-range (4mph, 15 mile range) is upwards of £1,000. Savings can be made, but that has to be weighed against what you get for your money - for instance, you may save a couple of hundred pounds buying online, but can you call a local firm when something goes wrong?

There's still a fair bit of the week to go though, so we'll see how things pan out.

Sunday, June 25, 2006

My Grandfather Is Dead

He died in the early hours of this morning.

It was expected. He's been ill for decades, his heart and all sorts wrong with him, and then the last few months he's been in and out of hospital, intensive care units and isolation wards.

A week or so ago he was allowed home. Unfortunately he was completely wheelchair-bound, and "home" was a third-floor flat in a block with no lift, where the internal doors were too slim to admit a wheelchair - so that amounted to bedbound. I know my grandfather. He likes to walk in the forest and go to the shops to choose his own food. He was a very active and social person. Being bedbound would drive him utterly bananas, and at home would be worse than at hospital as at least at hospital there are other patients and doctors to chat to.

Mum says that he was expecting this and was prepared for it - all his paperwork and everything was in order and everything is set. The funeral is later this week, a church service, more for the religious members of the family than for him. He's requested no grave or anything like that, he doesn't want us travelling to Germany just to come look at a bit of stone.

When mum told me, my initial reaction was "well, that was expected", but that was probably because she'd built up the conversation - "Are you sitting down? Is Steve with you? I have some bad news...", I mean, there was only a limited number of things it could be. As she explained more about what had happened, about the time and about everything being prepared, I began to cry and I spent quite some time just crying, even after we'd hung up.

But since then I've been remembering lots of the great things my grandfather did with and for my sister and me, places we went, songs we sang, and so on. Recently we'd been writing letters to each other using automatic translation tools, but one sentence at a time, painstakingly trying to make sure it still made sense. I swear an old-fashioned paper Collins English/German dictionary would have been quicker and easier, but at least we could make each other laugh and we knew we cared.

I don't know what I'm supposed to do now, if I should be sending cards or flowers or anything to my grandmother or my mum or my uncle. I'm sort of at a loose end.

Friday, June 23, 2006

New Symptom

or, new manifestation of an old symptom...

CRAMP in the FACE.

This is Not Fun.

I get a lot of cramp anyway, all over the place. The pain level isn't so bad compared to the other pains I get, but it does tend to come on by surprise which is annoying. Thus far the worst place for it was in my back - the first couple of times that one happened I was terrified because I thought I couldn't breathe so I ended up having a panic attack on top of it. But in my face??? Why should my face get cramp? First thing in the morning?

I'm chalking it up as another reason why I should definitely have a baby - I can entertain it with funky facial expressions...

Thursday, June 22, 2006

Moving Forwards

Steve and I have been talking and we've identified that I seem to be going through a patch of depression this month. I know it's true. I'm crying every day and I'm taking the tiniest comments out of all proportion and getting upset about them.

An example would be yesterday, I was on the phone to Pip, and he asked if Steve and I had set a date for me moving up here permanently. Happy Well-Balanced Mary would have taken that at face value and said "I don't know, but you're not rid of me just yet!" Depressed Mary, on the other hand, stammered out an "I don't know" and then spent some time regaling the ever-suffering Steve with theories about how Pip didn't like her any more and couldn't wait to be rid of her and so on and so on and so on...

Why am I depressed?

I don't know. I've got everything to be happy about. Loving boyfriend, sorted-out benefits situation, stable medications, enough to eat, everything I need really... But I keep wanting more. I want to be better, I want to be not in pain, I want to have a part-time job and money I earn, I want lots of friends I can go and have a cup of tea with.

I want lots of things!

What can I do about it?

I also don't know.

While Steve was out earlier, he went to Leamington Shopmobility and got some leaflets and information. It's possible to rent mobility scooters from them by the week, so we're thinking that we might give that a go, see how much real difference it makes and which sort works best for me and how much more freedom it gives me here. I also want to go to a local ME support group up here to see what other people have in place. I'd like to have a social worker, and join a club, maybe an art group or something, or try to do a one-hour-a-week college course, but I can't do any of those things while I'm spending *most* of my time at home but a fair chunk of time up here, with a view to moving up here as soon as Steve feels ready.

For now, I'm just happy that Steve and I are cuddling each other and trying to think about how we can sort stuff out. Talking and identifying problems and trying to sort them out, rather than dwelling on them until they become huge.

Also we had a lovely late lunch of a picnic in the garden, and then we napped, and then we weren't hungry for any dinner so I had a cream apple turnover for supper. Life seems better already.

Afternoon Out

people having fun
Originally uploaded by girl_of_bats.
Wednesday afternoon we planned to spend with a couple of friends who had also booked the time off work. We figured that if the weather was good, we'd go to Burton Dassett country park for a picnic, and if not, we'd go for a pub lunch somewhere.

The weather seemed a bit hit and miss so we opted for the pub lunch. We went to a nice, fairly upmarket place called The Woodhouse which had really nice gardens and did nice food too. It's just as well the gardens were nice, as they had no readily available disabled access and I was feeling so rotten I had to be in the chair. They had one ramp, but that led to a locked door with curtains across it and no bell or anything, and there were no "please call for disabled assistance" buttons by any of the stairs into the pub either. Still, I was lucky enough to not be on my own, so we sat outside and the others went in to order the food, and I just tried not to drink too much and end up needing the loo.

After lunch, we decided to go to Burton Dassett after all. It was a nice drive, and then we got out and Steve had brought a folding chair for me to sit in. The others had immediately run up the nearest hill, so I decided to join in and with Steve on one side and my stick on the other we took the easiest route up the hill (with a couple of breaks) and set up the chair in what seemed to be the least windy spot, in the lee of a stone turret.

At first it was all very nice and idyllic. Beautiful scenery, happy friends, loving boyfriend. We put the kite together and tried to launch it but the turret was playing havoc with the wind currents.

Which is why they all wandered off.

I tried to get out of the chair to follow them, but I couldn't. I was stuck. And even if I had got out of the chair, I'd have been staggering and collapsing and making Steve worry, and I know he doesn't like thinking about me being disabled, he'd prefer it if I seemed as normal as possible and kept as safe as possible.

He kept coming back to me every so often, and if anything that made me feel worse - like a great big useless anchor, dragging on him and stopping him from doing what he wanted to do. Then he was coming back less and less. Half the time I couldn't even see them any more from where I'd been deposited.

I don't know how long we spent on the hill. I know it was 2pm when we ate lunch and 5.30pm when we finally got back in the cars and left Burton Dassett. I was getting more and more tired, I was getting colder and colder, I was slumped in the folding chair and the wind had come round and was whipping my face with my hair and that's probably a good thing as it gave me cover for the crying.

Steve and the others came back eventually, and by all accounts they'd had fun. I'd pretty much cramped up in position in the chair and needed help getting out of it, then Steve helped me down the hill again which involved severe pain, lots of tears and several rests. I was praying that I could just be folded into the car and go but I really must learn to say those things out loud, as praying doesn't work.

Since we were all together again, I tried to join in again by throwing a frisbee, but even with the help of the wind my arms were so weak that I only managed to make it go a metre or so, which got me summarily laughed at. Didn't matter, I couldn't have crumpled up in on myself any more than I already had.

I ended up sitting on the grass as I couldn't balance on the bench, then I ended up crawling towards the car as I couldn't walk at which point it was considered funny to put things on my back without me noticing and snigger at me.

Yeah, hilarious.

I think Steve had a reasonably good time, but I think both of us would have had a better time if I'd been a good little crip and stayed at home in bed. Maybe I'm just fooling myself to think that I can integrate.

Tuesday, June 20, 2006

Scaring Mr Stevie

Today has been one of Those Days. You know the ones. I think it's probably because of the weather - it finally persisted it down this afternoon/evening, and changes in the weather always affect me quite a bit. Anyway, whatever the cause, I haven't been able to nap properly, I've been really stressed and restless and jumpy and getting fretful about the tiniest, stupidest little things, and that probaby contributed to what happened this evening.

Steve and I decided to pop out to Frankie & Benny's for dinner, which is something we do on a fairly regular basis when neither of us is really up to cooking and we're not looking to do the whole "dress up a bit and go to a nice restaurant" thing, we just want a hot meal and one up from a McDonalds. The meal itself was disappointing tonight, it was practically swimming in grease, but at least the staff are nice and friendly.

By the time we'd finished eating, I was at the end of my endurance, feeling really dizzy and looking forward to going home. Steve helped me up and we left the restaurant, the car was parked just a few metres from the door. But in those few metres the cool air hit me.

I collapsed.

I collapsed right onto the hard, cold, wet, dirty paving of the carpark.

Ow. Yuk. Shiver. Ow.

I didn't realise until tonight that Steve hasn't seen me collapse outside before. He's seen it happen indoors, but not outdoors, and for some reason it scared him more. I suppose there are advantages and disadvantages to each. Indoors is more likely to be warm, clean, dry, comfortable, familiar, with carpets and seats and so on and less passing cars. There's also a degree of privacy. Outdoors however, there's less objects with sharp corners to bash yourself on, there's often a handy passer-by to offer assistance if you're by yourself, and it's not *always* cold and wet.

Of the two, indoors is preferable, but outdoors isn't that hugely different except the bruising may be a bit worse. It's really shaken Steve though, and I don't know how to make it better for him.

Things are just all aargh in my head right now.

Monday, June 19, 2006

Holiday, Part II

Last time Steve renewed his contract he insisted on being able to take two weeks of holiday. Management were appalled at this demand, but they want to hang on to him (I wish he realised how much they need him) so they negotiated that he could have two weeks as long as they weren't two consecutive weeks. So, we had the first week at the beginning of June (when we went to the hotel), and now we're having the second week.

Steve came to pick me up at the weekend. I really didn't want to stay at home any longer than I had to. There's stuff going on that I don't especially want to blog about, the short version is that it's easier for everyone if I'm out of the way. That sounds like a really stupid emo kiddie sentence, nobody wants me, I'm going to go and eat worms... it's not like that. I'm wanted and I'm loved, there are just certain tensions that could do without me hanging around town and fanning the flames by the sheer fact of my presence.

So, here I am in Warwickshire again at Steve's house. Poor bloke, he's knackered. There's this muppet from his work who keeps ringing him for the most inane reasons. The last answerphone message I heard was left on Saturday and was asking "which brand of Leatherman do you think I should get?" Seriously, he deems this worth interrupting someone's holiday time for?

We spent much of today in bed asleep, but by mid-afternoon we decided to venture forth and look into this mobility scooter malarkey. The Active Mobility shop had a sign on the door saying they'd be back in ten minutes, so we went round the corner in search of the first little cafe or similar we could find... and we're glad we did.

I can't remember the name of it, but we Will go back and I will try to remember to make a note of it. Fantastic little cafe. Steve had coffee (a proper cafetiere of proper coffee) and I had tea (a proper china teapot of proper leaf tea) complete with sugar lumps and so on and so forth, and we each had a scone with butter and jam. Steve doesn't even like scones and jam as a rule, but he figured this place would do it properly and he wasn't disappointed. Lovely and fresh and gorgeous. The staff were amazing too. There was an old man who seemed to be the owner/manager, who was very friendly and chatty, but the twenty-something waitress was just as polite and friendly and you don't often get that.

From what we gathered, the man hires waitresses knowing full well they don't want to do waitressing forever, and he actively encourages them to apply for jobs that are more the sort of thing they've studied or trained for, or that they aspire to. We reckon this "mentoring" attitude is what makes his staff happy to work there in the meantime, and therefore leads to such exceptionally good performance.

In a very happy mood, we went back to Active Mobility, but unfortunately we didn't have much joy. Steve thinks the woman was being paid on commission as she was steering me towards whatever was more expensive that fitted in with the criteria I was after, rather than what Steve could see that was more likely to suit me and my needs.

Steve also admitted (after we had left) that he didn't think he'd be able to lift the bits of a disassembled scooter into the back of the car. I reckon there's no knowing unless you try - after all, those things are designed to make it easy - but it is something to take into account that I hadn't really thought of, I tend to just think of Steve as "stronger than me" and leave it at that. Perhaps I do have to forget it. But I don't want to - a scooter would give me so much freedom back.

However, it wasn't the time to discuss it - we were both knackered again and we had to refuel the car and get home before the major rush hour traffic started. Home, bed, sleep, wake up about 9pm, swallow a load of tablets, somehow order pizza between the two of us, hang about online and hope that we both feel better tomorrow.

Sunday, June 18, 2006

Not sure how I feel about this

New Scientist article

Thanks to The Goldfish for this link.

I've always been very focused on "well, ME/CFS is a bugger, but at least it can't kill me..."

May add more to this post later.

Saturday, June 17, 2006


I got my blue badge through today, which is impressive since I only sent off the application seven days ago! This is the difference between Suffolk County Council (efficient) and Waveney District Council (cause me no end of problems), I suppose.

I don't actually have a car or a driving license. I was saving up for lessons when I got ill, now I feel it would be irresponsible of me to try to drive in the state I'm in. I have enough trouble with my traffic awareness to cross a road on foot. I have vision problems. I have mental absences and sometimes pass out entirely. I get terrible headaches at a moment's notice. I have painful muscular spasms. I simply do not have the mental capacity and concentration to safely operate a ton of glass and metal, filled with combustible upholstery and highly flammable fuel plus an ignition source, at speed, through residential areas. It would not be safe for me or for anyone around me.

This is a part of why, even if I get a scooter of my own, I will still need my wheelchair for the days when I must go out but am not up to controlling the scooter safely. A scooter is a lot safer than a car - slower, smaller, stops as soon as you're not squeezing the lever - but I still found that yesterday I was getting extremely tired after a while just from the concentration needed to manouvere it, not run people over, not crash into things...

Plus, and Pip laughed at me for this, my wrist and thumb were really really getting tired. That's a valid laugh since he had two and a half stone of toddler asleep on his back and was also quite tired, but my point remains. I am not always going to be up to operating a vehicle, even a mini-vehicle.

That was one of the things I liked about the Tramper. It had a joystick with what they called an "umbilical cord" so another person could take over control of it while walking alongside, if the rider wasn't up to it. However at £5,350 plus extra for accessories, and being just way too big really, I've decided I don't want a Tramper after all. I'd much prefer something like I rode the other day. I'll also want to take The Goldfish's advice and try a powerchair.

I really think I want some kind of powered transport though. It was amazing, being independently mobile without the pain and exhaustion. I had to go into town here yesterday to go to the bank, and I had to do that walking with the stick, and within minutes of getting off the bus I was thinking "want a scooter, want a scooter, want a scooter..."

Friday, June 16, 2006

My First Shopmobility Encounter

Originally uploaded by girl_of_bats.
So, Pip and I went up to Norwich (the nearest city to here) to do some shopping. I'd phoned ahead to ShopMobility and was all set to get sorted with them. A couple of utility bills and my proof of DLA, and £6.50 to cover a year's membership and a day's scooter rental.

It only took a couple of minutes to do the paperwork and the scooter was very easy to operate. I could have done with it being a bit more adjustable around the seat, but for a rental it was fine. If you want to see it, then click on the picture there to go to my flickr photostream, and click through until you see it. Sorry, it's just that given a choice between posting up a pic of me sat on a scooter, or the littlun asleep on Pip's back, what was I going to do? Seriously?

The backpack for the littlun was a new purchase in Norwich. Several BAD outdoorsy equipment shops, with steps into them and then saying that stuff we wanted to look at was upstairs, is there a lift, no... I wasn't about to start having a strop and demanding to see the manager and so on, but I didn't want to sit like a lemon, so I made my point by going up the stairs on hands and knees and then back down the stairs on my bum while calling to the shop assistants (and customers) who were watching me from either end about how the DDA had only been over a decade coming, and made law in October 2004, so really how could I expect them to be complying with it yet and giving me any goddamn dignity?

It made me feel better, and Pip thought it was good.

We made an interesting little group meandering around Norwich. Littlun gets looks because he's a cute little kiddie. Pip drew looks because he had the big backpack on. Pip and littlun always draw female attention because dads and their sons are cute. I drew attention because I was a happy laughing young woman on the sort of scooter that is more often associated with the elderly. And there we were obviously together and possibly a family, for all anyone knew.

Certainly in Mothercare and the Early Learning Centre the staff assumed that I was littlun's mum. Sadly though, this was not in a sense of "we can do this and this and this for disabled mums", more in a "coo, not seen one of them with a baby before" way. I was told how lucky littlun was to have Pip to carry him about. I was told "ooh, I don't know how you cope." I think if he had in fact been my child and I had been a mother I'd have gone bananas from all the patronising crap. As it was I ended up almost in tears, because I really don't know when or if I will ever have a child myself. Accepting my disability is allowing me to have a more fulfilled life from day to day, but as far as the long term goes, I still feel that things are kind of stuffed.

Slept in the car all the way back to Pip's house, and then helped give littlun his bath. Being able to do things like that helps me believe that it's not such a foregone conclusion after all.

Wednesday, June 14, 2006


Having a rotten time of it the last day or so. Yesterday (Tuesday) was another day where I had to spend the entire day in bed, and couldn't focus properly on any task for more than a few minutes at a time. For instance, I could read a couple of blog entries, type a little response, and then have a break - but I couldn't read a whole chapter of a book.

For dinner I ended up phoning my parents and asking if they could pick up some pizza for me. I hate having to do that because it makes me feel so dependent and I know it interrupts their evening too, but it's part of this thing about promising to eat one hot meal a day, if I can't sort it out for myself then I am obliged to ask someone else to sort it out for me.

Chris (my stepdad) arrived a bit later with pizza. He tapped on my door (they have keys so he had let himself in the main door, but still knocks on the actual door of the flat because it's my flat and he respects my privacy) and I got up, lurched to the door, wrenched it open and promptly fell over backwards into the bathroom, where I landed heavily on my bum and narrowly missed knocking my head on the toilet.

Chris had his friend Colin with him, so that added an extra dimension of embarassment. They put the pizza down, helped me up off the floor and onto the sofa, gave me my pizza and left.

One slice in I realised I'd forgotten to give them the money for the pizza. I was mortified. How could I have done that? Why hadn't Chris prompted me? What on earth would Colin think of me and how my mum had brought me up? My purse was sitting right there on the table, it was just that it had clean escaped my mind to give Chris any money this time. I phoned mum and she calmed me down and said I could give them the money the next day, and to shut up and eat my pizza.

It's for this reason that today (Wednesday), despite not feeling great, I decided that I felt better than yesterday so I was going to damn well go to my parents' house and settle the account ASAP. Which meant I was the first to hear the news...

They've finally set a date to get married!

The idea of marriage has been floating around for a while, ever since it became apparent that Chris's next of kin was no longer anyone he was in touch with or who had any idea of his wishes. If something happens to Chris, he wants my mum to be there in the hospital, being asked for permissions and there by his bedside and so on. Vice versa too, although if something happens to mum, Davina and I are "official" next of kin and we both love and respect Chris enough to make sure that he is regarded as family too.

Naturally that's not the only reason for a marriage (there's some love stuff and having been in an extremely solid relationship for several years) but that's what tipped the balance and made them decide to get engaged to be married, rather than just continuing to live together ad infinitum.

The date set is mum's birthday, which will be in September this year. It's not concrete yet - mum needs to find her Decree Absolute from her divorce from my biological father and then she and Chris have to go to the register office and make sure they *can* get married on that date. It's a Thursday so hopefully it won't be a problem.

It'll be a small wedding. At present the list is: Mum, Chris; mum's best friend and her husband; Chris's best friend plus partner if he has one; me plus Steve if he can get the time off; Davina plus Pip if they're still together; and mum's brother and his wife if they can make it.

I'm so happy that mum's got someone who makes her as happy as Chris does.

They told me off for having a soppy grin, would you credit it!

*continues to have soppy grin*

Monday, June 12, 2006

Productive Day

Slightly better day today. Poor Steve had to go back to work after his week off, and so I set my alarm so that I could call him and make sure he got out of bed on time. Which worked well. Unfortunately he didn't have a good day at work. They've just let all the crap pile up for him to deal with, the poor sod. And then they tried to tell him to do next weekend on call as well, at which point he told them No - it's not in his contract to do on-call, and he doesn't get anything more than his usual hourly rate for it, so he's not doing it. I only hope he can stick to his guns.

Pip took me to the Citizen's Advice Bureau as planned. We had to wait about an hour and a half to be seen, which wasn't bad going really. Waits of three to four hours are not unknown there. They got my form sorted out, the original is now posted and a photocopy is in my file here at home, so unless the Tax Credits department messes up again (which I'm sure they won't, being the highly trained and intelligent people they are) then everything is fluffy and nice and I won't hear from them again unless, once I get another job, I'm stupid enough to attempt to claim again. Either way, the ball has left my court.

Pip didn't have quite as much instant luck with his own issues (which I won't discuss here), but at least he now knows What To Do Next which is a good thing and all he was really looking for. He drove me home and was lovely enough to take my bin contents down to the outside bin (this is one of the most difficult things for me to do) before heading off to see Davina and leave me to nap.

I was feeling quite positive after getting the Tax Credits thing out of the way, so I continued to have a Productive Day within the constraints of my capabilities.

First up, I knew I would have to do some things outside, so I got ready, got set, and dropped a prescription request form off at the chemist, went to the cashpoint, went to the shop for some milk (and an ice-cream) and came home. It's great living with all those things within one block of my front door. If I didn't have them nearby I wouldn't be able to live on my own like this, it's that simple.

Another rest, and then it was online. There's a mobility scooter I want. Not just any little scooter though. This is the scooter to rule them all. It's more of a buggy really. It is... The Tramper . I've been looking at it for a couple of days now, and oh boy, it's wonderful. Take a look at that site, I mean really. This thing has a 30 mile range, it goes through snow, it goes through water, it goes over rocks and gravel and sand and everything. This is a serious scooter. I would pay all my mobility money and then some to afford this - ok so I'd have no money left for taxi fares any more, but would I care?

But it's just over £5,300. Not including accessories.

Which puts it a leetle bit out of my range, when I could get a reasonable little scooter that will take me around town for around £1,000 - £1,500. Less if I'm happy with second-hand.

I put all this aside as academic and instead focused on the short term. Davina's birthday is coming up and Pip doesn't know what to get her. I offered to help Pip look but we come up against a problem. Pip can't manage a son in a buggy and a friend in a wheelchair simultaneously. So I've called ShopMobility at Chapelfield Shopping Centre in Norwich, and they will charge me £5 for a year's membership plus £1.50 per day to use their mobility scooters. Then, we get four hours free parking at Chapelfield for using the scheme, so that practically pays for it. So hopefully at some point this week Pip and I will go with the littlun to Norwich on a rampage, erm, I mean shopping trip.

My brain aches so I'm signing off for now.

Sunday, June 11, 2006

Bad day

I woke up at 6.30am, but it was 12.30pm before I'd managed to put any clothes on, or have any breakfast. Going to the loo was an exhausting expedition on hands and knees. I can hardly stand, even with leaning on furniture and walls and whatever. The curtains have remained closed all day but it has still been too bright in here. I've slept all I can, there's no sleep left to do, but I still feel physically exhausted.

It's a beautiful day. I wish I could go out and enjoy it.

Special mention to the girl downstairs - she had her baby outside in the yard and they were playing on a blanket outside the window of their ground floor flat, and she'd turned up the stereo in her flat so they could hear the music outside. Normally I'd either endure it or I'd go out, but today I couldn't do either, so I stuck my head out and asked her if she could turn it down a bit for ten minutes while my painkillers worked. I figured ten minutes would give me enough of a reprieve to maybe go back to sleep or whatever, without being overly demanding - I don't want to be an awkward neighbour. I was a bit concerned that she'd think I was being bossy or superior, but instead she and turned it down and said she hoped I felt better soon. Didn't even turn it up again ten minutes later, even when I stuck my head out and said I was feeling a bit better, thanks, just smiled and said it was ok.

My friend James came to see me this afternoon. He had an idea that we could walk to the seafront - it's only a couple of hundred yards, if that - and get an icecream. But I couldn't. It would have been too much for me. We considered the wheelchair, but James has his own problems which mean he might not be able to manage me in the wheelchair safely. And even if he could, I don't know how long I would cope with the brightness of outside before the pain got completely unbearable.

We sat indoors and played ludo in my darkened room. A few turns into the second game, I passed out. My head hit the board, pieces went everywhere. I was only out for a few moments, but when I got to myself again my head was exploding all over the place. Luckily James has been my friend for long enough to know how to deal with this. He tipped me into a more comfortable position, picked up the pieces and put them in their bag, went and got my medication bag, checked I had a drink, and helped me get dosed up, then he sat with me until the worst had worn off. Then he asked if I wanted him to stick around, or to go home and leave me to sleep. I opted for sleep.

I really hope I feel better tomorrow. Pip is supposed to be giving me a lift to the CAB because I need help sorting out some paperwork, and I really need some brainpower.

Drive in the country

Greg's car
Originally uploaded by girl_of_bats.
Saturday afternoon saw more gorgeous weather, and there was some sort of sporting event on as well. My friend Greg was as keen as I was to avoid the football, so he came round with his son in his car (pictured) and we went for a nice drive round country back-roads in search of a pub that had no England flags on it.

Our quest was rewarded at the Geldeston Lock, which is one of those pubs which only got electricity in the last decade when it had a generator installed out the back, it's that remote. It was a wonderful, idyllic day in the countryside, and it was nice to catch up with Greg again as I've not seen him in a few months (I mean in real life rather than online).

After a while we went back to his house and I had a bit of a nap. Then we all went out to Pizza Hut for dinner. Halfway through, my arms stopped working and I dropped my slice of pizza, and I had to just sit there with my arms dangling by my sides, waiting for enough strength to come back for me to be able to keep eating.

It's okay when that happens with Steve - I don't have to explain or anything. Greg sort of gets it, but wasn't entirely sure what to do. I tried to make it easier by joking, but mini-Greg is seven years old and therefore very interested in everything. I explained that my arms weren't working, and that I would have to wait a while before I could pick up my pizza again. Bless him, he got my walking stick and started chattering about how maybe as I use it as an extra leg I could use it as an extra arm... I'm not sure how I would do that though!

Finished dinner and Greg dropped me straight off at home so I could get some proper sleep in. That helped. I still miss Steve being around when I go to sleep though.

Catch-up entry

Breakfast: back home
Originally uploaded by girl_of_bats.
Sorry I haven't posted for a while.

Steve and I had a lovely last day at his house in Leamington. I woke up feeling pretty good so I was able to fix us breakfast in bed - cups with lids mean that as long as I can move, it's safe for me to crawl up the stairs with hot drinks, cos they won't spill all over me and scald me. Cups both in one hand, packet of pain au chocolat held in the teeth, up the stairs on knees and other hand, and then Steve who decided he would run downstairs to grab plates to save us from crumbs. Which left me feeling a bit "damn" but I didn't really mind.

A decent breakfast and cup of tea meant I felt fighting fit for the day ahead and so we decided to go out on the bike. We went to Warwick to visit Steve and Andy, (friends of ours who have a business together who Steve had done a little piece of computery-wizardry for) but when we turned up they were just waiting for some people for a business meeting, so we decided to head on to Stratford-Upon-Avon and find lunch there.

Being out on the bike is fantastic. Steve's bike is very comfortable - it's not one of the sports bikes with the really uncomfortable tiny seats - and he's a very experienced and safe rider. He doesn't show off, or weave in and out of traffic, or try and do wheelies, he just enjoys the ride and that means that so do I. We're very responsible about only ever going out when we're both absolutely sure that I am having a Good Day and am definitely up to it, and we take phones, medication, cash and credit cards with us so that if, IF something goes wrong, we can get me a taxi home or get a room or whatever is necessary. Steve is very emphatic that to enjoy it properly we have to minimize the risks as much as we possibly can. And I do enjoy it, I really do, feeling so free and whizzing along with the sounds and the smells and the bike between my legs and Steve there in front of me and the Warwickshire countryside all around. It's wonderful being able to share something like that with the man I love.

Thursday afternoon we drove back to Lowestoft (in the car - we can strap the folding walking stick onto the bike but I don't think it'd work with my suitcases and the wheelchair for a four-hour drive). There was a gorgeous sunset, but every layby had a big screen of trees obscuring it.

Friday I had a neurologist's appointment. It was just a "turn up and wave" type of thing, as there's nothing they can do for me. The neurologist was running an hour late. The department staff, though, were angels - every so often one of them would come round with a tray of plastic cups of lemon squash which was really welcome. After about 45 minutes waiting I got one of my Headaches From Hell and started crying right there in the waiting room, that was embarassing. A woman came over and offered me a wet-wipe - I don't know what help she thought it would be, I think she just wanted to do something. Steve got me a cup of squash and I had some painkillers and that helped, but I was a mess by the time we saw the doctor and I can't remember a thing he said, or what his name was, only that he's going to write to my GP, so I'm guessing anything important will be in that letter.

The rest of the day is a blur. I know I must have dozed in the car, I know I was full of painkillers, I know I didn't want to sleep because I'd been having bad dreams and because I didn't want to waste any of the time I had left with Steve. We had lunch, and then we went into town and got some passport photos done of me, two for me to apply for my Blue Badge for disabled parking, and two for me to actually apply for a passport. Then we had a look in H Samuels because I wanted a new watch.The one I picked is very pretty - silver with a kind of mottled blue face. I was going to buy it myself but Steve waved me away saying he'd get it as a present and I could think about him every time I checked to see what time it was. Silly boy, I think about him all the time anyway.

I wish he hadn't gone, or that I could have gone with him. I don't mind so much spending time on my own when he's "around" - in the shower, or in another room, or at work - but it's not nice when we're this far apart.

Thursday, June 08, 2006

Too... Hot...

It's been 34 degrees here on my last full day at Steve's house. Even if I'd had any energy, Steve had none. It was just too hot to do anything you didn't have to do, especially when you're feeling a bit rough to start with. And as NHS Direct said I should avoid caffiene, dairy products, fizzy drinks etc, that's meant no tea/coffee, no coke, no ice-cream... and I think Steve may have been showing solidarity. Which considering he's a computer-monkey who works daft hours and practically runs on coffee, may have been rather a shock to his system.

Spent most of the day in bed (or more to the point on bed) dozing and wishing for the cool of evening. Then it was air-conditioned Pizza-Hut for dinner, and off to Sainsburys, where we bought a pint of milk to make tea and coffee in the morning (my tum really feels much better now, just the soreness from the physical exertion left), some pain au chocolat for breakfast, the DVD of Memoirs of a Geisha (only really makes sense if you've read the book, but has some stunning and I mean STUNNING pieces in it) and a sodding great big electric fan for the bedroom.

Ah, that's better.

Wednesday, June 07, 2006

Final night

Final night
Originally uploaded by girl_of_bats.
At about 4pm on Monday I started to feel really not very well at all. We left the Trafford Centre and headed back to the hotel, where I drank plenty of water and went to sleep. On waking, I felt really queasy. Usually that just means I'm dizzy, but as per usual I went to sit in the bathroom, just in case I threw up a mouthful of water, as I sometimes do when I'm really dizzy.

It wasn't just a mouthful of water. It was my lunch. I recognised it.

Steve, bless him, came running through and helped hold back my hair and managed not to be sick himself.

One of the things about ME, one of the primary things you might say, is an extreme lack of energy. Throwing up takes a lot of energy. By this point, I had pins and needles in my hands and feet and I felt like I was made out of overcooked spaghetti.

Up came my starter, which luckily had been soup so it wasn't quite as distressing as the main course.

By this point I was shivering and cramping like nobody's business. Steve did a really good job of looking after me, reassuring me the whole time, helping me stay upright over the loo while I was vomiting because I wasn't capable of balancing and so on.

I had to lie on the floor of the bathroom for a while, then we thought I was safe to transfer back to the bed.


By this point I was throwing up just bile and water - I couldn't even keep a mouthful of plain water down for god's sake. I also desperately needed some painkillers, but I couldn't have any painkillers either, because I wouldn't have been able to keep them down - they'd have just come straight back up.

We phoned NHS Direct to ask if they had any ideas about how to stop me throwing up, but the words "chocolate teapot" come to mind. First of all, they were getting confused because a lot of symptoms - dizziness, headache, weakness and so on - are symptoms I have anyway due to the ME. The nurse said "I'll have to do some checking on ME, I'll call you back." That took about an hour. We think they were trying to decide whether I needed hospitalisation or not.

"No, we just want some advice about how to control my vomiting, because I have to take medication for my ME symptoms."
"Oh, you can take your medication, that's not a problem."
"But I can't even keep water down, I just vomit my tablets straight back up again."

I mean, what isn't understandable about that?

Eventually, while I was throwing up again, Steve managed to get some sense out of them. We should give me *nothing* to swallow, not even water, until I had gone an hour without vomiting, and then try me on very small, infrequent sips of water to see how it went. If I managed that okay then I could try a small piece of plain bread, and then see about tablets, but basically we were looking at toughing it out.

Steve sat up most of the night keeping an eye on me. By about 3am I had come back to the bed and fallen asleep. I awoke at 6, thankfully he was asleep, and I started with the little bits of water which seemed to stay down okay. I was horribly sore, weak, dizzy and queasy, but not vomitty. No. I'd swapped ends. :(

I managed the little bits of bread. I managed my tablets. We checked out of the hotel ok. It was a bit touch and go for the drive home, though...

Wednesday today and feeling a lot better. I may even have breakfast, when Steve wakes up.

*checks clock*

Make that lunch.

Another day, another lovely breakfast

and then after having a cuddle and watching the news for a bit to let breakfast settle, we went down to the hotel Country Club to see about a swim.

Plan was that, since I would need Steve to help me with taking a shower and getting changed and so on, and they don't have a designated Disabled changing room, and things might be a bit awkward with me being in the Mens changing room or him being in the Ladies, that we would be allowed to use the Ladies Golf changing room, which also has a door to the pool but is a lot less busy. The few ladies who do use it basically just pop in to change their shoes and pop stuff in a locker - when they went to the desk for the security code for the day, they would be advised that their changing room was doubling as a disabled changing room for the morning and to be aware that there might be a man in there but that he was there as a carer for a disabled woman.

We didn't encounter any female golfers, and although there were a couple of hitches - first we were given the wrong security code for the door Into the room, and then the door Out (to the pool) was locked, so Steve had to get dressed again and go fetch someone to let us out - it worked well. Not as well as if they'd had a proper changing room with grab rails and so on, but let's face it, the DDA has only been on the statute books for 11 years, and only actual LAW since October 2004, why should a large hotel chain like Marriott be complying with it already?

Having a swim and a jacuzzi was great. I feel so much lighter in water, and the warmth helps my muscles. Then I relaxed on a sun-lounger while Steve swam some lengths, we got changed, and went and had a drink in the bar and read the Times, very civilised. Then a bit of a rest in the room before going to the Trafford Centre for lunch and shopping.

At the Trafford Centre, AVOID the Cathay Dim Sum chinese restaurant, they gave me food poisoning. Other than that, we shopped and had a lovely time. I got a new skirt and a new top and a new hat and a new camera case, and Steve got some mosquito repellant and some carabiner clips (ok, not so exciting).

The Trafford Centre is great for access. Some of the shops are a bit pants, especially if you have trouble with headaches or hearing - they play their music too loud, they put extra displays in the aisles so wheelchairs can't get through, they have stands that are so high that a person in a wheelchair can't see anything at all - but the centre itself is good. And enormous!


Steve told me he knew someone who lived in the area and that we'd just pop in for a cuppa. Ok, fair enough... we walked towards a house and suddenly, THE BEAR! I actually audibly shrieked and jiggled! Turns out that it was his girlfriend's house, and he was there with his two littlest sons for the day, so Steve and him had planned to surprise me. They definitely managed that!

We had a great afternoon in the garden there. They had a big tent set up for the boys to nap and play in the shade, and a nice big grassy garden. Ann (The Bear's girlfriend) was very much the attentive hostess, constantly offering drinks and food and icecream and so on. We took a few photos and videos, but we were more intent on enjoying the day rather than turning it into a photoshoot. There was a barbecue and deckchairs and all in all, it was just a wonderful summer day. I ran out of energy at about the same time as The Bear had to take the bearcubs back to their mum, so we headed off back to the hotel for a sleep.

This evening we've continued in our "very relaxing" theme, with a nice carvery roast dinner and a Gorgeous dessert (with icecream and bananas and cream and nuts and CHOCOLATE SAUCE), and a stroll around the park here. We've also been to the leisure facilities bit to ask about accessibility, and it seems that should work out - although it's a good thing we asked as there will need to be a couple of additional arrangements, we can't just turn up and go. See how that works out.

Now, I have more important things to attend to than blogging!

Now that's what I call Breakfast

Steve and I woke up at about eightish and decided that the plan for the morning was to make our own tea and coffee, and order a bit of breakfast on room service. We put on the nice white bathrobes so as not to scare the porter, made sure the "Do Not Disturb" sign was off the door, and lazily made cuppas and found some TV programme to have on in the background, which was a bit of a novelty for us.

As you can see, breakfast was (a) enormous and (b) varied, we didn't like all of it but we only just managed to finish the bits we did like anyway, so not to worry. Then we relaxed for a bit and slowly got dressed and sun-creamed up for the day, and by 11am we were out of the room and heading out. Steve suggested I might like to see the sea from the West coast rather than the East, which sounded reasonable to me, so off we set. I had thought that while we were up this way we might visit our friend Rupert, also known as The Bear, who lives on the Wirral. Steve said that we'd have lunch by the seaside, and then call The Bear and see what he was up to for the afternoon.

So I was more than a little confused when we suddenly pulled off an A-road into a residential area a bit East of Liverpool, and parked the car...

Sunday, June 04, 2006


Saturday morning saw a very long lie-in, and then we packed our bags and set off for the Marriott Hotel Manchester.

My dear little faff-monkey had an idea about how we could enjoy the fantastic weather and get a pub lunch somewhere en-route with a nice beer garden, but we didn't actually leave the house until gone 2pm. Anyone who thinks it's women who take their time doing things can think again - I had my suitcase all packed up and then spent an hour or so reading while Steve was still not even dressed and "urgently" transferring yet more music to his mp3 player. As you can imagine, by the time we got to nice country pubs, they'd all stopped serving food. We ended up having Burger King at a Moto service stop instead.

Got to the hotel at about sixish, where the very smiley desk staff informed us that we'd booked a Superior Deluxe room, but that if we preferred there was a fully accessible Deluxe room available instead. But there's a lift up to the floor where our Superior Deluxe room was, and the doors are all wide enough for the wheelchair and so on, so we opted to stick with that. After all, it's not like I have an extreme disability, I can get around a room without the chair, and Steve will be with me 24/7. The desk staff made us a booking for dinner at 8:15, to give us time to rest and so on, and then we went up to our room. It's lovely. There's a fridge which I've mentally marked "Do Not Touch Under Any Circumstances" as it's got a sensor on it that will charge the room a fortune if we so much as look at it funny. We *could* have internet access, for just £15 per 24 hours... I think not, so I'm doing these blog entries in notepad to upload at a later date or possibly via Steve's phone if we can make that work. There's an ENORMOUS bed and ALL the pillows, air conditioning, a lovely bathroom, slippers and a fluffy white bathrobe each ("If you wish to take it with you on your departure, a charge of £50 will be made to your room") and nice tea, coffee, hot choccy, biscuits, toiletries, little sewing kit and so on.

I ran a bath while Steve got the bags from the car (he insists that next time I do not bring the lead ingots) and had a nice soak, then relinquished the bathroom to the faff-meister while reminding him we only had an hour till dinner. He said he was just going to have a "quick" shower - and then while I tried to sort out my hair, he busied himself with various faffage including seeing if he could fit his new digital video camera to the wheelchair. Half an hour to dinner, and he finally went into the bathroom. I finished my hair, got dressed, did my makeup, put on my clothes and shoes, read the folder about the hotel services... at 8pm I poked my head in the bathroom and told Steve he had 15 minutes. "Okay!" At ten past eight I poked my head in again, "Okay, be right out!" At twenty past eight he finally emerged and asked me what I thought he should wear...

Dinner was lovely. The hotel restaurant is great, the staff are attentive without being intrusive, and the food was delicious. We took our time over it, and then before going back to the room we had a bit of a stroll around the grounds. We fitted one of the StickLights to the wheelchair which drew a couple of glances - yay innovation! Finally it was back up to the room - smiley staff we passed nodding and smiling and saying "have a nice night!" - making a nice hot choccy, and then cuddling up for relaxey snuggles.


Saturday, June 03, 2006

False Start

So, Steve has booked time off work from Monday 5th June through to Friday 9th June inclusive. He doesn't work weekends, so we were pretty much in the mindset that when he finished work yesterday (Friday) evening, that would be it, woo, start of holiday!

Steve being one who actually Does Do Work, he usually stays at the office late. This last few days that I've been here here, he hasn't managed to get home before 8pm. This was also the case yesterday, while he was finishing stuff up ready for his holiday.

Managers being managers, they breezed out of the office at about 4pm.

At 4.30pm, Steve found out he'd been assigned to "on-call" for the night. This was not expected. He'd been on-call all week, but understood this to NOT include Friday night. Turned out the managers had decided that Steve could be able to cover things, "just" until 3.30am, and then on-call would be someone else's responsibility.

(At this point I should explain "on-call". Steve works for a shall-remain-nameless global IT company that provides web service for large corporations. These corporations pay a large amount of money to ensure that if there is a problem with any of their networks, public or internal, day or night, someone will jump to it and be sorting it out pronto. The on-call monkey cannot go more than a certain distance from the building, cannot turn off their phone, cannot get drunk, and so on. If they get a call or a text message, they are expected to drop *whatever* they're doing, contact the office, and quite probably then go haring in to fix it.)

You know where this is going already... about 10.30pm, Steve and I finished munching some unlucky fried chicken and were looking forward to our holiday when, lo and behold, someone in India is having problems. Steve tried to sort it out by phone but no, they needed him to go in.

I honestly can't remember seeing him look that upset and p*ssed off before. He kept apologising to me like somehow it was his fault or something and I just wanted to cuddle him and make it all better, but there was nothing I could really do. In the end, I told him that I'd come with him and wait in the car with my laptop, sleeping and playing the Sims2 - I have a 3-hour battery which is nice. :) I think it helped. He phoned me a couple of times from the office, just to let off a bit of steam. Apparently his conversations with the technicians at the office in India were going a bit like this:
"I ran the Test thing and it said it's working, but then when we try and use XYZ it's not actually working!"
"Okay, can you open up the Control Panel for me?"
"But I ran the Test thing and it..."
"Yes, but now I would like you to open the Control Panel, please."
"What's that got to do with anything? We did the Test thing and it said..."

It was 1.30am before he got out, and he was completely frazzled. I was okay, I'd just tipped back the seat of the car, which is quite comfy really, put my cushions around me and my fleece over me and gone snoozles. Poor Steve on the other hand, can drive the route home from work on auto-pilot, but once we were back asked me to please just give him very specific instructions because he couldn't think straight about anything except computers. I mean really, we were at a level of "Sit down and take your shoes off." (wait for this to be completed) "now, get a glass, put some water in it and follow me up the stairs" (I'm so glad I was able to crawl up the stairs without support).

I hate seeing him in this state. I mean, when I'm here I can take over easily enough - I can order a pizza to be delivered so that we're both fed, I can tell him to do things including assisting me so that we both get up to bed, and he's okay if he gets a decent amount of sleep in. But when I'm not here... he doesn't look after himself properly, and I worry about him.

I hope his managers had lovely evenings.

Thursday, June 01, 2006


Steve is an evil sod and has just nearly made me throw up my pizza through laughing too much...

He was filling in a survey online to win an iPod video or something, and it wanted to know his occupation. Well, he's a network monkey. And now he won't stop saying "mon-KEY! mon-KEY!!!" and cackling.

There's no question about why I love this man :) :) :)

Bank Holiday Monday

Me at Billingford Windmill
Originally uploaded by girl_of_bats.
On Monday Steve and I were taking a slow drive back to his house in Leamington. We had a lie-in, spent the morning packing stuff, messing about on the internet and loading the car, and then we set off at about midday.

First stop was in Beccles, a tiny little quaint town about ten miles inland from Lowestoft, where we decided to hunt down some lunch. Beccles has only just heard of the *wheel*, never mind wheelchair access, so it was a very slow stick-shuffle to a pub/hotel/restaurant where we sat down for a meal in one of the quieter rooms, the "Library" room.

At least it was quiet until a family came in - mum, dad, grandad and two little boys aged about eight. WHY they had to invade the quiet room I don't know, but while the adults drank and chatted, the boys yelled and swore and climbed on the furniture and ran round the room and fought with each other... I think if we hadn't already ordered and paid for our meals at the bar and were waiting for them to come to our table in the Library Room, we would have gone and sat in the main restaurant, where the kids were under control, if not just got back in the car and carried on to a McDonalds drive-thru or something. I don't believe children should be "seen and not heard", but there's nothing wrong with having them sit properly at a table, including them in a conversation, telling them off for misbehaving and so on.

Somewhat frazzled, we got back to the car and put a nice CD on. Usually I don't much like having music on, but in the car it's different - there's going to be noise anyway so it may as well be good noise. I dozed here and there until we started to approach Billingford, where I saw the signs saying "MILL OPEN".

Wide awake. We'd stopped to photograph the mill before on this journey but the idea of it being open was appealing. The mill came into sight and the sails were going round! A quick consultation with Steve and we decided that yes, we were definitely stopping off to see what was what.

Turns out the mill is looked after by volunteers and opened to schools on request, and to the public about six days a year. We were pretty lucky to have happened to be driving by on a day when not only was it open, but there was wind enough for it to be going round. Entry and a full guided tour, right up to the top and all around, was the princely sum of two pounds per person which we were more than happy to pay.

Safety was a big consideration though. Obviously anyone going up the mill does so at their own risk. It's a very old building and it doesn't conform with health and safety standards. Nor does it have a lift. But this isn't lunch, this is a rare opportunity to see inside a working windmill! This is worth taking a limited risk and overdoing it for!

In the end we worked out the following: I left my stick and my bag downstairs and Steve took the camera in his pocket. We would go up the stairs last of our tiny group - first me, then Steve who would support me, um, from behind. At the top of each set of steps I would crawl away from the hatch so Steve could come up. For going down steps, the rest of the group would go down, then Steve, then me, with Steve putting my feet in position on each step from below so that I couldn't lose my footing, and then finally our guide.

Incidentally, the sails were stopped as we left (5pm, closing) and they have two stopping positions - St Andrew's Cross (pictured) and St Georges (I'm sure you can figure it out). The guide told us that in the days when there were mills all over the countryside, the mills would use those positions to spread an informal communication up and down the region that the Customs and Excise people were on the way, and to hide up any contraband.

If you click on the picture, you'll go to my flickr stream and can see all the still photos I took describing the mill. I took some videos too. But actually doing it - the dust, the smells, the clanking, the being in the curved rooms and so on - it was indescribable.

It also seemed to really please the volunteers that I was so chuffed :)

And now I'm in Leamington for a little holiday with Steve. He's working Tuesday-Friday, and then on Saturday we're off to Manchester, to a nice hotel with a big bed and fluffy pillows and a swimming pool and so on, and we're turning off the phone and he has NO WORK and it'll be great.