Happy New Year, tiddley-pom

Hopefully by the time you read this it will be 2007. If it isn't, what the hell are you playing at? This is no time to be on the sodding internet! Well, I realise I am, but that's different, I'm also halfway through drafting a long post about internet addiction.

Unsurprisingly I don't have the energy to be out there partying my little cotton socks off, which is kind of a shame. Still, on the plus side, I won't have to pay treble for a cab home, and snuggling in bed with my laptop didn't require me to book tickets in advance. There's always a plus side.

Pip is also likely to be at home, because the Littlun is too young to understand anything about New Year's celebrations or get anything out of it beyond a stinking temper about his sleep routine being disturbed. So today we went out and had a really nice lunch, the three of us. Which was nice.

I went to sleep really early this evening, before I'd had dinner even, and that paid off because the first barrage of fireworks was at 9.30pm. I can rest and meditate despite fireworks but I can't do actual proper sleep through them, so if I'd stuck to my usual routine and tried to settle and get to proper sleep at 10 or 11, I would have been on a losing tack. Anyway, I made myself a sandwich for dinner and settled myself down and now I'm just staying safely put - late evening on New Years Eve is not the time to come unstuck and have to call for help.

All this means I'm in good shape to manage to stay up (yes I'm in bed but you know what I mean) till perhaps 1am. By then, the fireworks should be all done, most of the partygoers will have sung their way home, and I can get back to the rest of my proper sleep. Yay planning!



Happy New Year :)

Christmas Day

Best Present
Originally uploaded by girl_of_bats.

"And don't forget the presents," said the Chair of Indefinite Studies, as if reading off some internal list of gloom. "How... how full of potential they seem in all that paper, how pregnant with possibilities... and then you open them and basically the wrapping paper was more interesting and you have to say 'How thoughtful, that will come in handy.' It's not better to give than to receive, in my opinion, it's just less embarrassing."

"I've worked out," said the Senior Wrangler, "that over the years I have been a net exporter of Hogswatch presents-"

"Oh, everyone is," said the Chair. "You spend a fortune on other people and what you get when the paper is cleared away is one slipper that's the wrong colour and a book about earwax."

Terry Pratchett, Hogfather.


With this in mind, I feel extremely glad to have at least one present this year about which I honestly can say "how thoughtful" and mean it, so well done James who gave me a packet of my favourite type of tea, and a "tea-egg" which will enable me to drink it without getting a mouthful of tealeaves.


I am pleased to report that my sister wasn't too noisy for me to cope with after all. This was due to the fact that she had her boyfriend there and she had to keep stopping talking in order to kiss him. There were a couple of points when I felt like reminding them that there were other people in the room as well, but I did a good job of keeping my mouth shut, which is just as well as it probably would have been construed as jealousy due to Steve's absence.

Steve is one of those people who avoids Christmas as much as possible. He goes to stay at his mum's holiday flat in the Alps (she isn't using it because she is in the UK doing family/grandchildrenny Christmas things) and skiis. He invited me to join him, but I don't do well with the cold (it got to minus 23 degrees C there last year before the thermometers went off the scale), I don't do well with travelling for long periods (almost 24 hours to get from his house to that flat), I'm hardly likely to be able to join in and ski, and if I'm going to spend large amounts of the Christmas period sitting in a flat by myself feeling cold, sore and knackered then I'd prefer to be in MY flat, which at least has all my stuff, a phone, an internet connection, friends and family living close by... He phoned me though, which I kind of needed. I miss him hugely and I miss being able to talk to him on the phone every day.

I spent most of the day with my parents, including a bloody lovely Christmas dinner cooked by my stepdad, and then Pip came to pick me up to spend a couple of hours at his. Littlun has his first train set, a Thomas the Tank Engine one, Pip sets it up and then Littlun is in charge of flicking the junctions, pulling the lever that makes it stop at the station, that kind of thing. Amazingly the child is NOT more interested in the boxes.

Plenty of naps, and an early night, but now it's Boxing Day morning and I am shattered. I have an open invite to mum's for lunch again, which I'll probably take up on the basis that it's a lot easier than cooking for myself. There's a few hours yet though, which is good as I can't stand up properly yet this morning. Still, at least at this time of year it's not just me...

Supposed to be resting

So, given that there's Stuff Going On tomorrow, I was meant to be super-resting today. As in, do nothing. No clean dishes? Use the paper plates and plastic cups left over from my birthday. Benefit renewal forms need filling? It'll wait, there's another week before I have to send it off. Flat is untidy? Not important, no one is coming round anyway because today is scheduled as a Total Rest Day. Today was meant to involve me taking it really easy.

Of course, it never works out like that, does it?


First thing, I wanted a bath. I very probably needed a bath. But I was having a worse-than-average day for movement and co-ordination and getting in and out of the bath was going to cause some serious difficulties. Eventually I phoned mum, and asked if I could come and use her shower (which has a seat and grab-rails) at some point that day. Despite the energy needed to walk to her house, it's a lot safer to use her shower than my bath, and to be in a house with someone checking on me rather than in my flat on my own.

Once I'd showered, it would have been silly to walk home with wet hair and mum had far too much to be getting on with for me to want to ask her to dry it for me. So I sat with a cup of tea and tried to get some energy back. So far so rest-y. But then my sister turned up.

Some of you know my sister. She talks. Incessantly. Loudly. Too fast. High-pitched and with a constant rising inflection. She repeats herself, um, repeatedly. She hates the idea of anyone else being the leader of a conversation. She hates the idea of two people having a conversation that she isn't part of. She hates people talking about other people who she does not know (although she does this to everyone else). If you leave the room to escape while she is talking, she will follow you. If another person enters the room, she'll go over everything she's already said for their benefit. And heaven help you should you decide to interject an opinion of your own...

Despite being repeatedly told that my brain simply cannot cope with her loud, high, fast and never-ending babble, she still targets me with it. I can sit there clutching my head with tears running from my eyes and she still won't stop, or even slow down a little. To compound the situation, my mother has made a plea for the two of us to make an effort to "get along" over Christmas.

So, despite every part of my brain and body begging me to lock myself in the bathroom and stuff soap in my ears until the Incredible Talking Machine found another target, I offered to help her wrap her last couple of presents. Luckily, it's rare these days for me to be able to remember any of the crap she comes out with and now, nine hours later, the only real effect is that I am revelling in the blessed peace and quiet that only a decent set of earplugs can bestow, and *really* appreciating it.

I found myself filled with a certain dread about having to contend with her again tomorrow morning. My hope was that when she goes out tonight to celebrate Christmas Eve, she drinks enough to get a hangover and want to be very, very quiet. But a nice long nap saw me right again, plus I've equipped my handbag for tomorrow with the guarantees for the electrical gifts, a couple of pairs of earplugs, and my fully-charged pocket PC in case I do find myself having to take refuge in the bathroom. I can deal with just about anything with enough forward planning.

Sister dealt with, the remainder of my day has been nice and restful. I turned on the TV for the Nine Lessons and Carols from King's College Chapel which is lovely and Christmassy. Unfortunately I could only watch about ten minutes before I had to turn it off again, but it made me feel a lot more full of goodwill to all mankind and all that sort of thing. Well, it's that or I've accidentally taken a double dose of painkillers. Either way, life is good.

Merry Christmas.

All set for Christmas

Ladies and gentlemen, I am pleased to be able to say that I am now all but ready for Christmas. It may come and do its worst!

The presents are all bought and wrapped and labelled and, what is more, they are at the houses they should be at too. I know whose house I am visiting which day, how I am getting there and whether I should expect to be fed or not.

Today I went and picked up my prescriptions for the next couple of months and went to see a friend to deliver to them my final Christmas card.

Tomorrow I am going to buy one loaf of bread and two pints of milk just so that if I end up too ill to go to anyone else's house, I will have plenty to get by on here at my flat. That is the only piece of preparation left for me to do. I think.

Term Time Only

For the last year, Pip's Littlun has had quite an action-packed weekly schedule. Places like Sure Start and the local library have had things for him to be getting on with most days, socialising with other toddlers his age and doing various noisy and/or messy group activities. He's also had pretty-much weekly visits to the indoor adventure playground, and swimming when Pip has a friend with a day off who can hang onto the tot in the changing room (I don't count for that, being female).

Except we've run up against a little bit of a problem. Most of these social/activity groups are only run during term-time when the older children of the parents - and in some cases, of the people who organise the groups - are safely out of the way at school. In the school holidays, the groups are suspended. It makes sense I suppose. If you have a six year old, you can't include them into a toddlers group and you can't leave them at home. However, it means that Littlun's diary has rapidly emptied.

The adventure playground is effectively Term Time Only too. Technically we could take Littlun there, but in the school holidays it is (understandably) overrun with great big mean tough bruisers of seven or eight years old. As the "big" kids play equipment fills up, they start to investigate the other stuff, and a lot of them have the sort of parents who read the sign saying "This Area Is For Under-4's Only!" as having a little disclaimer underneath saying "oh, and your child too, obviously. Don't bother keeping an eye on him."*

Furthermore, the main "swimming friend" has a girlfriend who works at a college, so once term-time ends, he has other things to occupy his day off.

And finally, the one Sure Start group that isn't listed as Term Time Only is restricted to under-2's, and as of this autumn Littlun no longer falls into that category.

Of course, the Term Time Only problem cropped up in the summer holidays too. But summer was different. We found a list of the locations of all the council-owned playgrounds in the area to visit. There was the beach to go to as well. It was easy for Pip to pop Littlun into the pushchair or the backpack and take him for a walk into town or similar, seeing whatever there was to see along the way. And there were things like our trip to the zoo. Sadly, these activities to not lend themselves well to a cold, wet British winter. Strolling around a lovely green park on a beautiful warm summer's afternoon while the toddler runs about laughing his head off with other kids simply is not the same as shuddering with cold standing on an empty field hoping the rain will hold off while the toddler slips over on the mud.

But that's just it. The parks are empty. All those kids, they must be somewhere, must be doing something. They can't all be watching TV. What are they doing? Where have they gone? How are their parents keeping them entertained?

Pip and I are fast running out of ideas. And because Pip is a single father rather than a mother, a lot of the usual parenting channels are effectively cut off to him. He went to a father and child playgroup at Sure Start once or twice, but it was mostly non-resident fathers, and the only bit of help he gleaned from any of them apparently was that if he was to sign up to a website like mumsnet then as a single father he would get chatted up in seconds by single mums on the lookout for a man who likes kids... which I'm sure is interesting but not exactly what we're looking for here. We are considering setting up an account in my name and him using it pretending to be me pretending to be Littlun's mum, but frankly that could get just far too confusing.

So, I throw the question of entertaining a two-year-old in the Christmas holidays open to the floor. Any ideas?




* I wish I could read the invisible signs. Like "please take a ticket and wait for your number to be called" has "unless it's you, in which case go and give the security guard some verbal abuse." Or "please use the antiseptic hand gel on entering this ward" which has "except you, because even though you haven't washed your hands all day you have extra-special skin that can't possibly harbour germs of any kind." And of course "Disabled parking spaces, blue badges must be displayed" "unless you're only going to be ten minutes, or it's raining, or you're running late..." but that's another post.

Fakers, Misdiagnoses and ME/CFS

According to ME Research UK, about 150,000 people in the UK are affected by ME/CFS.

However, I believe it is highly unlikely that all of these people have the same illness. I think these 150,000 people divide up into those who have ME/CFS (whatever that is); those who have been misdiagnosed due to lack of resources; those who have been misdiagnosed due to lazy doctors; and those who are faking it. I will try to address each of these in turn.

First, I should explain what I mean by "whatever that is". The diagnoses "ME" and "CFS" sitting on a person's medical notes could quite easily be changed for "I don't know", except as a rule doctors don't like writing or saying "I don't know". It is a Dustbin Diagnosis. There is no positive test for ME/CFS. Doctors simply test for everything else they can test for that could be a candidate - multiple sclerosis, hepatitis, hypothyroidism, etc - and as more and more results come back negative, they edge closer to the catch-all.

It has also been suggested that ME is one of a number of Chronic Fatigue "spectrum" illnesses - in other words, that there are a number of distinct illnesses that medical science does not yet fully understand and has not yet developed a definitive diagnostic test for, and that as research progresses, people with the ME/CFS label will be divided up into those with ME, those with fibromyalgia, those with Epstein-Barr, and those with Smurpington's Disorder, and those with Flibbligibblititis, and so on.

With this in mind, it is probably fair to say that quite a chunk of our 150,000 ME/CFS patients - indeed, probably the majority - have ME/CFS of one sort or another.

Sadly we now move onto the other three scenarios, all of which bode badly for people who have ME/CFS.

The issue of misdiagnoses is a touchy one but one that should not be ignored. As stated this takes two forms. First, is the issue of a lack of resources. There are certain tests that the NHS will not carry out because of the cost or the time or whatever. I give you the example of someone I know personally. He is about my age and was given the diagnosis "ME" about ten years ago. Recently he managed to save up an obscenely large amount of money in order to have private tests done. In addition to the astonishingly high fees, he also had to travel across several counties to attend the centre. The private tests revealed he had Lyme Disease. Lyme Disease can be treated with a big, prolonged dose of antibiotics. He has spent the last ten years - his late teens and early twenties - living with his symptoms and being told there was nothing to help him beyond painkillers, antidepressants, and cognitive behavioural therapy (CBT). Now it turns out he could have been "cured" a long time ago. To make matters worse, Lyme Disease gets less treatable the longer you live with it - so this delay may have harmed his potential recovery.

Unfortunately it's not always the lack of resources that is the problem.

I have had a fairly wide range of tests on the NHS. I have had several sets of blood and urine tests, an MRI scan, two EEGs, and face-to-face examinations with a neurologist, a physiotherapist, and a CFS specialist. Obviously I've had nothing like the battery of tests my friend mentioned above had privately, but I've certainly had a reasonable share. I now know for a fact that I do not have multiple sclerosis, cancer, diabetes, thyroid problems, and a load of other things I can't even spell.

However I have met several people who got their diagnosis of "ME/CFS" after giving one sample of blood and one sample of urine to be tested. Their doctors have ruled out the obvious and then stopped. I don't know why. They don't know why. They are stuck wondering how to ask their doctor if they can have an MRI to rule out multiple sclerosis, without sounding pushy or paranoid. Not appearing paranoid or ranty or upset is important as there is a certain breed of doctor who ignores all recent advice and research and persists with the 1970's view of ME/CFS as "a jumped-up form of depression" that simply involves more (psychosomatic) physical symptoms. They tend to then look surprised when antidepressants and CBT fails to "cure" a person, and claim that the lack of recovery is the fault of the patient for "not taking the CBT seriously". On the contrary, many patients follow the CBT courses to the letter because they are desperate for anything that will give them their former lives back. In my experience, most of them report that while their general mood is improved and they find it easier to deal with their day to day lives, thankyouverymuch, it hasn't actually stopped the headache, the muscle pain, the swelling glands, the sore throats, the weakness and dizziness and all the rest of it.

Finally, we have the fakers. It is the fakers who utterly cock things up for people who are genuinely ill. If a faker of any illness is "found out", everybody with that illness is then treated with suspicion. A good example would be someone getting signed off work with a bad back. In summer. While the football's on. You're all raising eyebrows, I bet. But there are definitely a few people who WILL genuinely get terrible back problems - summer and football will not make people immune from having accidents - and the last thing they need is to be considered to be swinging the lead.

But fakers also damage the genuinely ill even if they are never found out at all. They skew research results. They take resources (carers, doctor's appointments, disability benefits etc) they don't need, and because the resources are finite, there's less for those who are genuinely in need. They often think they're just screwing the government, or their employer, but the fact is they are making life harder for all genuinely ill/disabled people.

Before I got sick, my circle of friends knew of one person who "had ME". She was our age, someone's sister. She had the magic version that stopped her having a job and doing housework, but didn't stop her doing much else - walking into town, spending a few hours walking round with her mates shopping and "hanging out", then getting on a train and going drinking/dancing/clubbing in the nearest city, coming home on the first train the next morning, all this posed no challenge to her whatsoever. She had amazing stamina for chasing round a playground with her nephew, pushing swings, clambering up and down climbing frames, playing football, you name it. But get her within five metres of her doctor's surgery or the JobCentre and suddenly she acted half-dead.

People like that are the reason the genuinely ill get treated with disbelief. Except for a vociferous minority who spend more energy shouting and campaigning about ME/CFS than most people spend on their jobs and families, we are not claiming to be the illest people in the world, not by a long way, and in most cases do NOT want to be treated as such. But there are some things that like it or not we need and can no longer provide for ourselves - a place to live and money for food to eat being top of the list - and it annoys me that I, and all the other ME/CFS patients, have trouble getting these because of fakers.

If I had the energy to go round all the agencies, fill out all the forms, read all the rules, jump through the hoops, go to all the appeals tribunals, wait for all the backlogs, deal with all the incompetence, and thus claim every financial benefit and bit of physical help that the government says I am entitled to, it would be proof positive that I do not have ME.

One Year

Steve and I have been together for one year.

He has made me dozens of cups of tea, sweet, sweet tea.

He has caused me to call the police in a panic asking if there had been any road accidents between our houses (long story).

He has never, ever, tried to hurry me on the stairs.

He has absorbed a metric f*kload of my tears into the shoulders of assorted tshirts.

He has helped me to do any amount of things I could not otherwise do, from everyday stuff like getting in and out of the bath, to big events like my birthday party or visiting a theme park.

He gets on with my friends.

He has held my hair out of the way and made reassuring noises while I have been copiously vomiting.

He cheers me up when I feel rotten.

He has surprised me with any amount of little gifts and gestures, including unexpected Kinder Eggs with the morning cuppa and surprise meetings with friends I have not seen for a long time.

He stood next to me on my mother's wedding day.

He has, unasked, occasionally rushed home from work at lunchtime to get me some lunch and a drink when I have been too ill to get down the stairs.

He hasn't put spikes on my mobility scooter... yet.

He can happily spend time sitting in bed with me, both of us on laptops - and send me an MSN while doing so.

He's given me more cuddles and kisses than I can count.

He's caused me to write quite possibly the soppiest blog post ever, for which I apologise, but hopefully you understand why I wanted to.

He's rather wonderful, actually.


for the benefit of readers, buckets are located by all exits. Normal service will be resumed shortly. Thankyou.

Iiiiiiiit's Chriiiiiiiiiist-maaaaaaaas!

Well, no, it isn't, there are still more than two weeks to go. But as far as various commercial establishments are concerned, Christmas it is, and we can all have a slice.

My Christmas has several components. First off the mark is usually the Shops, who have been selling tinsel and greetings cards for a good couple of months but now have the Christmas CD permanently looping. Last week I overheard workers in several shops asking each other if it really was necessary to listen to all twelve of the days of Christmas, and if maybe they could alternate each loop of the Christmas CD with a different album. This week they all seem to be just gritting their teeth and trying to ignore it, although I suppose a few may have been signed off work with stress and are hiding under the blankets at home hallucinating partridges in pear trees.

I wish I felt more brazen about using and abusing my "disabled" status as I am, under the terms of the infamous Disability Discrimination Act, perfectly within my rights to ask a store to turn their music down or off for a short time to enable me to shop there without acquiring a massive headache. Asda, for instance, are happy to turn their in-store radio station off for a while if a disabled person who is affected by noise wishes to shop there, as long as they get a bit of prior warning. However I have not had the balls to do this yet. A shame, as I think there are a number of shop-workers I know who would be eternally grateful for a half-hour break from the Christmas CD. I could make quite a profit if I put my mind to it.

Next up is the Lights. These went up early last month in the town centre, for Diwali. Now there's a "Happy Diwali" banner at one end and a "Happy Christmas" banner at the other end, two celebrations for the price of one! My personal preference would be to have a banner for each winter festival - Diwali, Christmas, Hannukkah, Winter Solstice, New Year, Thanksgiving, you name it, we wouldn't have to stop celebrating until the sun came back.

I quite like the lights, as long as they fit in. Thing is that what is acceptable for a large high-street department store's main window display of Christmas lights, looks a little bit silly for a tiny corner shop.

This year, I think the lights on houses are sometimes even more garish than the ones on shops though, and that takes quite some doing! I have nothing against people who position their lit Christmas tree in front of the open curtains of their window. I have no problem with people winding a cord of lights around a tree in their front garden, or across the top of their porch, or putting a glowing snowman either side of their front step (although it's not something I'd go for).

No, the trouble is when you're about to round a bend in the road and there's such a proliferation of flashing multicoloured lights glowing ahead that you wonder if it's a major road accident or perhaps aliens landing... and then you get round the corner and see that it's a private individual's home Christmas decorations. Or worse, a set of three or four homeowners who are locked in a permanent game of one-up-man-ship, and are now having to stack the plastic reindeers as there's no longer enough room in the garden for them to be set out in single file.

And the inflatable Santas. Oh Dear Lord, the inflatable Santas.

Then there's Christmas shopping. At this point I should be honest, I'm not a Christian and I do not celebrate the birth of Christ. I do not go to Midnight Mass, I do not put up a Nativity scene, I haven't sung Away In A Manger since school. But I do celebrate Christmas.

My reasoning behind that is that festivals evolve over the years. "Christmas" has hundreds of connotations and associations to assorted religions and traditions and folklore going back various lengths of time. Some bits have been accentuated, some have been exploited, some have been almost entirely forgotten. But the midwinter festival, in one form or another, perseveres.

So I celebrate Christmas as a time, in the cold dark damp ICK of winter, when you make an extra effort to see friends and family, you exchange gifts, you cook and eat good food, you make a burst of light and warmth and plenty in the barren, dismal winter world around you.

This is not always as easy as it seems. I am stuck for ideas of what to get several people (including Steve, ideas welcome), and I have wandered round shops and browsed on the internet until my head spins and I'm still STUCK. And on the other side of the coin, my mother is still desperately trying to extract clues from Steve and me about what she could get us. We don't know. We have everything we need. All I tend to want from my mother is a nice cup of tea and a chat, and I get that on a near-enough daily basis. Aargh, what to do, what to do...


On an entirely different note, I have been informed that in my last update I forgot to mention George the Coconut. I am pleased to be able to relay to George's concerned fans that he is still happily sitting on a nest of bubble-wrap in Steve's front room. However he no longer sloshes when moved.

An Update

So, it's been nearly three months since I last updated my blog. Some readers know why, others I am sure can guess why. If you don't fall into either of those categories, then it'll suffice to say that I have been okay. There have been no traumas, no break-ups, no hospitalisations, no death and destruction. Thank you to those people who have contacted me to check I'm okay, it was really nice of you :)

Working back through things I have posted about...

I still have ME. Or CFS. Or fibromyalgia. Or whatever you want to call it - there's been a bit of a semantics debate about that elsewhere. I'm still ill, yeah? But I'm getting more used to it and if I'm careful I can do more things. Which is nice.

The withdrawal from the Cipramil was over and done with a couple of weeks after my last post at the beginning of September, and I am continuing to thrive quite happily without any form of antidepressants. I'm very glad to be off them again and have found myself wondering if it was such a bright idea to allow myself to go on them in the first place. I mean, I was a bit frustrated and upset about no longer being able to work and go for walks and ride my bike and all the rest of it, but I wasn't exactly slitting my wrists - so did my mental health need a pharmaceutical intervention, or would I have sorted myself out anyway?

Steve's work contract, which in the last post I made, was just beginning, is now coming to an end. As of this Friday he is a free man. He's got various things planned for the winter, like training courses, fixing up his motorbike, going skiing, a good chunk of hibernation and so on.

My mum's wedding went well. However given the nature of the internet, pictures will NOT be posted. Take my word for it that the bride and groom looked great and had a lovely day. The cake from Sweet-As was a definite hit, as were the wedding favours I had prepared.

The fits are still occurring when I am overtired. I had another EEG, a "sleep-deprived" one this time, but I haven't heard back about any results yet. I suspect that the EEG machine doesn't actually do anything, and the neurologists just think it's fun to make someone stay awake all night, no tea or coffee or chocolate and a hundred other conditions, and then stick wires to their head and flash bright lights at them.

Pip's Littlun turned two, and he's still every bit as adorable and lovely (and, on occasion, as much of a pain in the bum) as he was aged one. Pip's house looked like a tornado in the Early Learning Centre for a couple of weeks after the birthday, but now it's all cleared up. And ready for Christmas. Um.

The scooter is still wonderful for when I am at Steve's house. It's got wet a few times though. I had bought a supposedly "weatherproof" cover for it, but that's not much help in anything more than the lightest drizzle. So Steve is making a cover out of thick plastic sheets and duct tape.

...okay, I think that covers most of the stuff mentioned on the front page. I haven't gone through the archives. If I've missed anything just let me know in the comments. I may try and do another post later.

Withdrawal

Good news - the withdrawal symptoms are easing up. It's been about a week and a half since I stopped the antidepressants altogether and although I'm still by no means settled, there is certainly light at the end of the tunnel. The hallucinations are reduced to occasional bits of simple coloured light in my peripheral vision (it's actually rather pretty) rather than complex hallucinations like seeing and hearing people. The paranoia is resolving itself into what I would define more as "stress and tension", I feel... edgy, but I'm not jumping out of my skin every time I hear a noise outside or thinking I can hear people upstairs in the house when there is no one there.

Nightlight candles with a slight (as opposed to choking) lavender scent are helping me to get to sleep and get better quality rest. However I find myself putting off sleeptime because I am having horrific nightmares.

My brain unfortunately is so much rice pudding, I can barely read or type and have been avoiding MSN because I really cannot think about more than one thing at once, even if it's just someone saying "good morning" it completely derails my train of thought.

My body is really really unhappy, dealing with the withdrawal AND the ME. The hot flushes, sweats, shivering, cramps and the extra muscle pain from the stress and tension is a lot to deal with. I am focusing on posture and breathing to try and minimise the problems but I hope it eases up soon. I'm taking my maximum pain relief but that scrambles my brain even more.

In other news, those of you who knew Steve's work contract was up for renewal - the contract agency (which shall remain nameless) were for some reason incapable of getting a full copy (electronic or paper) of the new contract to him so he could look at it and read through it before he signed it. You'd think that "I would like to read the contract before I agree to be bound by it for the next three months" was the most ridiculous request they had ever come across. They still haven't managed to give him full access to read the contract at his leisure. However by late afternoon/early evening, a day's lost work/pay, much stress and the accumulation of what is going to be a monster phone bill for Steve in trying to sort this mess out, he managed to get someone at the agency to find his contract, go through it, reassure him on the points he was concerned about (like on call not being a part of his duties at all in any way shape or form) and then to send him an email confirming all those points.

As a direct result of which Steve has accepted the contract for the next three months and is going to work in the morning.

We went out for dinner to "celebrate". I managed my starter, but despite a full load of maximum painkillers then by the time our main course arrived the pain in my head was so bad I had no appetite at all and I wasn't capable of any conversation either. I could just about sit there with my head in one hand and my orange juice in the other trying not to be an embarassment.

If only all wibbles could be like this.

"a little bit of bread and butter, perhaps?"
Originally uploaded by girl_of_bats.

Our favourite cafe here in Leamington is Victorias, at 95 Warwick Street. We discovered it quite by accident. There was a particular shop we wanted to go to, we got there, there was a sign on the door saying "back in 20 minutes", so we decided to walk round the corner towards the main shopping centre and get a cup of tea in the first place we came to. We were expecting a Subway or a Cafe Nero, instead we spotted Victorias.

+++++ Warning! Advertisement! Blog entry continues below.++++

It's a proper, traditional tea room/coffee shop. You are greeted and invited to take a seat, anywhere you like. The staff are neatly dressed, polite, friendly, and unlike Starbucks or Druckers, they are attentive without crowding you, and efficient without rushing you. Tea, whichever variety you choose, is leaf tea served in a proper china teapot, and coffee (all sorts of varieties, ground on the premises) is in a glass cafetiere. It's all done properly.

They get involved in local projects, for instance the recent Warwick Arts Week, and it isn't unusual to go in and find the "resident" artist sitting by the window painting, or a professional storyteller, or a nutritionist available for free consultations (a calendar of these things is kept on one wall but I like surprises).

On a more up-to-date level, David (the owner) also owns the upstairs which he hires out as meeting rooms, with the cafe providing refreshments. He set up wireless internet access which covers the whole building at a very reasonable rate too.

And the cake. Oh boy, the cake. When mum asked me to sort out her wedding cake, and I knew she wanted something that would taste GOOD rather than three tiers of alcoholic fruit cake in inch-thick white icing, I went to Victorias and David gave me the phone so I could call the lady who makes his cakes.

++++++ End Of Advertisement++++++

You get the idea. It's a wonderful cafe.

So anyway, I was in town the other day, on the scooter, and pottering about as one does. I parked the scooter and pottered into Waterstones. The downstairs is mainly the kids section but, hurrah for them, they have a lift going upstairs, so upstairs I did go. Unfortunately going up in the lift I just drained. By the time the door opened, a ghost-white Mary staggered out and sunk to one knee.

Understandably this alarmed the upstairs staff a little, luckily I was able to reassure them, and after sitting down for a minute or two and drinking a bit of water (why does it always make people around me feel better if I drink some water?) they were happy to let me get back in the lift and go back downstairs.

I sat on my scooter for a bit and pondered my options. I wasn't really in a fit state to drive anywhere much. Victorias was just down the road. They know me. They know I am ill. They have had many conversations with me and know I am sensible. I turned the speed on the scooter down a bit, just to be extra safe - I would rather people got annoyed with me for going slowly than for running over their toes - and trundled off.

If Victorias hadn't been nearby, I'd have pulled into an alley to rest. But alleys don't have comfortable surroundings and tea.

I pulled up outside and somehow managed to organise my legs into getting me into the cafe. Alex, a lovely girl about my age or maybe a bit younger, helped me to my preferred table, a nice quiet out-of-the-way corner without too much direct light. Did I want my usual tea? Yes please. Then it occurred to me, I had to eat something before taking my painkillers. I picked up the menu but the text was all blurred, I couldn't even tell if I had it the right way up or not. Alex saw me turning the menu around and asked if I wanted something to eat. I said I just needed something before my pills, like maybe a bit of bread and butter. Alex told me Kate was in charge that day and she'd go ask her.

The picture above shows what I was given. A warm, buttered ciabatta, some crisps, and a small leaf salad with some cherry tomatos and grapes.

Furthermore, as I found out the next time I went in, Kate asked all the staff to keep an extra eye on me that afternoon as I wasn't feeling well. I did wonder why the four of them seemed to be having a rotating break that consisted of reading the paper a couple of tables away from me. I laid my head down on the table for a bit once, as a wave of headache washed over me, and raised my head again to see this and Kate saying "you don't have to have these if you don't want to, but I think it might do you some good."

She was right, and after about an hour of peace and quiet, an opportunity to do some breathing techniques, some food inside me and some sugary drink, I was in a fit enough state to get home safely.

I have no idea how much they charged me for any of these extras or even if they did. I know when I left I handed over a fiver and then put the change I was given straight into the tips bowl.

Starbucks wouldn't have looked after me anything like as well.

Lack Of Posting

Please excuse my lack of posting.

You remember the fits?

Well, they're still happening. I've been referred back to Neurology, but apparently there is a teeny-weeny (less than 0.5%) chance that they could have something to do with a reaction to the antidepressants I have been taking, Cipramil.

I wasn't taking much, they just put me on a half-dose (10mg as opposed to the standard 20mg) when I got ill, to try and cushion the somewhat inevitable upset of losing my job, my income, my hobbies, my mobility, my lifestyle, the friends that went with each of those things (except for the core of "real" friends who could accept my new limitations), and exchanging it all for 24/7 pain.

This seemed very sensible, and indeed it seemed to work.

Except fits are bad. It can only be a matter of time before I have one at the top of the stairs, or in the kitchen with a knife in my hand, or out and about at a busy road. At best I will find myself carted off to hospital and have a lot of inconvenience to deal with, at worst we could be looking at some real damage occurring.

With this in mind, I fully agreed to come off the antidepressants. It's not the best time for it, things are kind of up in the air, Steve's work, mum's wedding, plus the fact that the fits themselves are rather stressful... but getting off the damn things seemed to be a matter of urgency, and hey, I'm a fairly sorted-out, confident kind of person, so as per the doctor's directions I spent two weeks taking them every other day and I'm now not taking them at all.

And Oh Sweet Jesus. It is not good. I don't just feel "depressed". We're talking about mood swings, full-blown paranoia (Steve is getting it in the ear with stuff like "you're saying you don't want breakfast because you don't want me to have breakfast, because you think I'm fat!", I mean what sort of logic is that?), hallucinations, panic attacks for no reason I can figure out, sweats, shivers, bursting into tears because my biro doesn't work...

So anyway, this in mind, please let me off for not posting a lot. I'm trying to write a nice one...

Apparently I can expect withdrawal to last anywhere between two and four weeks.

Fundraising

Not much is known about ME and more research is needed into causes, diagnostics, management of the condition, drug control and possible cures. However it's not a killer (not widely at least) and research funding is hard to come by.

Every so often I get an email from an ME group I belong to. Here's the most recent:

On the 1st of September Simon Winnall and Ian Winstanley embark on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised will help fund the ME Research UK research programme. Simon's sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, "When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital. I hope by attempting to climb Mount Kilimanjaro we can raise funds and the profile of ME research." They expect that the climb will take 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level.

You can sponsor them by visiting their own webpage to download a sponsorship form, or you can sponsor them online via their own justgiving page www.justgiving.com/winnall . The guys will post a Kilimanjaro blog once they return so you can read about their adventures.

Steve looked across and said "oh, my mum's done that".

So let's not pretend these guys are doing something amazing by "funding the trip themselves" and struggling bravely up the mountain against all the odds to selflessly raise money for the poor, pathetic bedbound sister (get those violins going). It's two lads going on a fun holiday, with an aim to do something that grandmothers can do. BUT it is damn good of them to think of using their holiday jaunt to try and raise money to help people like Nikki, and I hope they do well.

I also hope they take lots of photos for her, and try not to make her be too pathetically grateful about whatever they raise.

Went to the park

No no no
Originally uploaded by girl_of_bats.

With Pip and the Littlun, Mon 7th August. Mostly, they ran round and I took pictures. It was fantastic until it started to rain and we had to go home. This picture is of them on the little roundabout, Pip is actually propelling it by pedalling furiously on these teeny-weeny little pedals and they're both laughing their heads off. I took a video of it as well as the photos. Very cute.

I think when I have a child, a good master plan might be to find a local teenager I can bribe to come to the park with us a couple of times a week, not so I can offload the child completely or anything, but so that I can do the "supervising responsible adult" part and they can do the "able to climb and run" part. You know, like they can help the child to the top of the slide and I can be waiting ready at the bottom to shout "wheeeee!"

I was hoping to write a better blog entry about it than this.

I Enjoy Sex

It's okay. This isn't the traditional post made by a disabled person whereby I insist upon shoving it in my reader's faces that I still have my sexual organs and the desires to go with them, usually by using language that is far too crude for my usual style and frankly cringeworthy and often smacking of desperation. To be honest, if there are still any muppets out there who think disabled people aren't sexually active then there's no helping them, no matter what I or anybody else writes on the topic.

No, this post is about this blogger.

"Abby" does seem to have a high sex drive, something I reckon she'd be the first to admit. Back in 2004 she started blogging about it, under an assumed name. Then in 2006 she got a book deal, and the book itself was recently released.

(That's happened to several bloggers, although I can't see it happening to me - which is a good thing, can you see me having the energy to write a book?)

Yesterday the bubble burst, as you'll see on her blog. A journalist has been harrassing her, stalking her if you like, and on Sunday they gleefully published her full name, details of where she works and so on in the national press. These are details which "Abby" has made an effort to conceal, not just for her own personal and professional sake but also for her family, friends and lovers.

The Press Complaints Commission's Code of Conduct states:

i) Everyone is entitled to respect for his or her private and family life, home, health and correspondence. A publication will be expected to justify intrusions into any individual's private life without consent.

As Tom Reynolds puts it "There is no 'public interest' in discovering the true identity of an anonymous blogger who happens to write about sex."

The article in question carries on to slam "Abby"'s lifestyle and lack of sexual repression to such an extent that one would think we were still in Victorian times. It must be admitted that the article does a marvellous job of proving the societal bias which "Abby" is often affected by, which is that what is normal sexual appetite and behaviour for a man, is frowned upon when demonstrated by a woman.

Personally, I applaud "Abby". In retrospect, it might have been naive to think she could get away with having a secret identity online. The internet is not a friendly place and success makes you a target. However her lifestyle, in my opinion, deserves no censure. She uses condoms and is therefore looking after herself and her partners. She doesn't bring children she cannot support into the world. She is independent. Her encounters appear to be based on a mutual understanding of what the situation is going to be each time, with a healthy amount of respect both for and from her lovers. She is able to identify what she wants and takes steps to get it. Are any of these bad things?

So, in solidarity: I enjoy sex. I enjoy it responsibly, I enjoy it openly, and I don't believe there is anything wrong with that at all.

Now, let's wait for the zoom lens to come through my window...

Helping people

In response to my last post, a commenter asked:

If I see someone going pale and looking confused, am I supposed to ask if they are OK or not? And if they say they are OK, but seem to me to be confused, do I walk away hoping they'll be OK, or do I check? I understand that folk persisting on checking might be not what you want at the time, but you have to admit, it's a bit of a tightrope for us on the "outside".

This is a good point. And, while I make every effort to be polite and profuse in my thanks to people who offer me help, "disabled" does not equate to "saint" and if someone is in a large amount of pain it's worth remembering that they're not trying to insult you personally should they come out with "F**K off and mind your own business!", they just want to be left alone with their agony and I think we've all been there.

So please, PLEASE don't be put off from offering help where you think it might be needed.

Individuals are all different, medical conditions are wide ranging, circumstances could be anything. Your assistance could just make someone more comfortable, or it could save them a trip to the hospital in an hour's time, or it could save a life. However at the very very least, if you ask someone if they need help then even if it is turned away you get to feel like you've done your good Samaritan bit for the day and can reward yourself accordingly. :)

As a rule of thumb... if you see someone who is apparently in difficulty - they've gone horribly pale all of a sudden and they've started to sway, or they've stopped in the middle of the street and they're clutching their head or their chest - then it's absolutely good and right and commendable to stop and *ask* them "are you alright? Do you need anything?" (side note: don't just grab them, they'll think they're being mugged).

If they can't answer properly, but it doesn't seem to be a 999 emergency, then things that might be helpful are:
-sitting down
-a drink of water
-discouraging people from crowding round
-finding out if there is a family member you can phone for them
-arranging a cab for them to get home safely

For help with these things, just go to the nearest shop where they *have* to have a first aider and will most likely be more than happy to help.

The trouble comes once they've said "yes, I'm fine, just a bit of a headache/cramp/whatever, it'll pass in a moment."

Are they just not wanting to make a fuss? Are they capable of making a correct judgement call? Or are they genuinely certain, with reason, that there is nothing to worry about?

Unfortunately you can't know, nor can you get a run-down of their medical history in the street (Not a word, Tom Reynolds). You don't know if you're overdoing it or underdoing it on the due care and attention front.

And this was the bone of contention in my previous post. How can I reassure my good Samaritans that everything is under control, they've done their bit and can we can carry on with our lives now?

The best way of dealing with this I ever came across was demonstrated by a security guard in Lowestoft's shopping precinct. I don't know where he picked it up but I was so impressed that once I'd got my head back together I bought a bar of chocolate for him and went looking for him just to tell him how exactly right he'd got it.

I was leaning against a wall clutching my head and he came and asked if I was okay, did I need anything. I said I was fine, it was just a bad headache and would pass in a few moments.

1) He said "You know, if there is anything you need - a quiet sit down, or to have a drink, or a taxi home - it's no trouble at all to go into one of the shops to sort that out for you." This is good because a lot of people in my state are really worried about making a fuss.

However, my headache was already easing off, so I said I wasn't going to spend much longer in town anyway.

2) He said "Okay, I don't want to hassle you, but I want to be sure you're okay, so just look me in the face and tell me whether or not you're happy for me to walk away." In other words, if I wasn't demonstrating clear signs of needing medical assistance, then he would leave the decision in my hands.

I looked straight at him, thanked him, and said that yes, I was 100% happy for him to walk away.

3) Before walking away, he reminded me "if you start to feel a bit odd again, remember all the shops have first aiders and they'll all let you have a sit-down if you ask.". Then, good as his word, he walked on.

I hope this helps.

Maybe I need business cards?

Today I managed to scare two shop assistants, one in town at Marks and Spencers and one at my local Co-Op.

By "scare" I don't mean they just asked if I was alright - I mean they were asking if I wanted to sit down or if I wanted somebody to get me a drink of water or if they could telephone someone for me. The young lady at the Co-Op even offered to walk me back to my flat to make sure I was alright.

Thing is, I wasn't feeling that awful! A bit of a headache, the usual dizziness, more muscle pain perhaps (I'm attributing that to the physical exertion of those fits, which incidentally haven't recurred since Tuesday night) but nothing incredibly spectacular. Although I must admit that my definition of "a bit" of pain is a very different thing to what it was two years ago and, I must therefore assume, quite different to the "normal" definitions.

Anyway, according to both these ladies, I seemed a bit confused and then went incredibly pale.

Now please don't get me wrong. It's good that people are concerned about each other. It's nice that they were looking out for me. I thanked both of them profusely and I hope they continue to show consideration and concern to their customers.

But I'd like some way of reassuring people when this sort of thing happens that they don't need to worry or fret or call an ambulance or make a song and dance of it. If I need to sit down, I promise to say "I'd like to sit down, please," and if I need a taxi to go home in I will say "could you call a taxi for me please?" but if I say I am okay, that means I am okay, honestly!

By the same token, however (Moon On A Stick Alert!) I don't especially want to get drawn into an in-depth discussion of my illness with every stranger who happens to see me go a bit pale. Nor do I want to be rude, though. And when I'm feeling groggy, I'm not really together enough to be properly firm and assertive or to think my way through a conversation properly.

Any ideas?

Fun with Fits

Bit of an Eek the last couple of days - I've started having rather impressive fits. Sensation-wise, it feels like cramp in my muscles which then start jerking and I can't really control it. This goes on for about three to five minutes by the clock (mum's estimate) and is then followed by little "tremors" for about half an hour afterwards.

This is not on the list of ME symptoms.

I don't actually pass out, but I don't have much idea what is going on, and afterwards I'm groggy as hell for ages, not to mention sore and exhausted.

Of course on the plus side, I haven't injured myself, as it's pretty difficult to injure yourself while you're in a bed...

Yesterday evening I was on the phone to Steve and started having one, so he called my parents and asked them to go to my flat and check on me. Mum got here and I was still twitching, and given she'd seen me have one at her house not six hours earlier, she decided to call the doctor. We ended up going to the local hospital/health centre which doesn't have an A&E but is a sort of "base" for the out-of-hours doctors for the area - and then they tell you if you need to go to the Big Hospital Proper (which to be honest, the state it's in, is to be avoided at all costs).

Out of hours doctor told me to make an emergency appointment at my regular surgery for today, where someone with access to my medical records could check me over, and to stay with my parents that night. No Big Hospital, phew! Mum popped back to my flat to get me some overnight stuff, which bless her included a cuddly toy Steve got me. :)

The emergency GP at my regular surgery looked over my notes, checked me over, and seemed rather focused on one particular thing in the notes. When I got ill and was being given all sorts of tests to try and determine what was wrong with me, there was "an anomalous result" on my EEG (a type of brain scan). The neurologist decided to see how it compared to the other scan, the MRI, and decided on the whole there wasn't anything there to worry about.

The GP I saw today felt that there was a possibility that this "anomaly" from the tests last year could have developed, or been aggravated by stress/the heat/nothing/anything/everything, so she wants to refer me BACK to the neurology department to be checked out AGAIN.

In the meantime, another possibility is that my system has had enough of one of the medications I'm on - unlikely but you never know, and I'm only on a half-dose anyway so I should get away with cutting it out. See how that goes.

Why can't I just have something nice and simple? Go to the doctor, they take my blood pressure and look in my eyes and ears and throat and hit me with the little hammer and say "okay Mary, the problem is This! You'll have to rest up for a couple of weeks and take these tablets, but then you should be fighting fit and back at work again, any problems come and see me, if not we'll just have a follow-up appointment in, shall we say a month?" If this happens to you, appreciate how lucky you are!

Lucky Dip

Lucky Dip
Originally uploaded by girl_of_bats.

As some of you know, my stepdad Chris is a musician and has been most of his life. He mostly plays the blues, and he mostly plays the guitar, and he's good enough at it to have been able to make a living doing it for the last thirty-odd years (although of late he's had to physically do less gigs due to the demands of looking after my mum and his own ahemageahem and health, particularly now they've both had heart attacks). I don't even like the blues, and I'll admit he's good. The steel guitars in particular give me a real headache - but I concede he certainly knows what he's doing. He looks the part too - long grey ponytail, grizzled beard, he can "do" blues.

So much for background.

His preferred local music shop has just moved to premises nearer the house, and today he popped in to have a look, say hello, and pick up some guitar strings. Because of the move they had a "lucky dip" offer, every customer had a go.

Chris got this mug. Click the picture for the big version. In case you're using a screenreader, it is bright yellow and bears the words "I'm Learning Music" in rather wonderfully childish lettering.

The staff at the music shop (when they'd stopped laughing, I presume) were very apologetic, but he proudly brought his mug home and I suspect he will treasure it and show it to everybody who comes to the house.

I think it's fantastic.

Lowestoft Airshow - Day Two

Alternative Title: "I'm oh so tired..."

12 noon
Well, I managed a bit more sleep in between the roadworks, but now the flights have started (Red Arrows judging by the sounds) so it's Mary wake-up time.

1pm
I feel really sick and dizzy today with the ME and unfortunately the earplugs are only making that worse, so it's putting up with the noise for today.

4pm
Mum calls, with computer issues. I'm relieved to have something useful to do and take my mind off things so I slowly and carefully take myself over there. The fan in her PC's power supply unit has given up, so with my supervision she extracts it and takes it to the nearest computer shop to ask for "a new one of these, please" - I admit this is not the most cost-effective method of computer part replacement, but it's quick and easy. She brings it home and I watch her put it in, then I connect up the wires and hey presto, one working computer again.

While I am at mum's house, Davina comes home. The silly (and did I mention, fair-skinned?) girl has been out for both of the last two days, 11am until 5 or 6pm, on the seafront where shade is hardly in abundance, wearing a bikini and relying on sunscreen and sunscreen alone for protection. And now she has sunburn. Bright red, angry, painful sunburn. All of a sudden, being stuck indoors isn't so bad...

9pm
I get the news that apparently there isn't going to be a second night of fireworks. There may be a god.

Steve and I say goodnight on the phone and I curl up for the night. Just on time, I remember to turn off my alarm clock - tomorrow is Saturday and I don't think Steve would appreciate a wake-up call!

7am
Amazing, a full night's sleep. That's SO much better :)

Lowestoft Airshow - Day One

Lowestoft Airshow is a big free two day airshow on the seafront, an interesting event to try and tackle. Last year I went to one day and stayed home the other. The day I went was great, I had friends and we had fun, everyone was ok about stopping for rests, and with my flat being so close to the main seafront "arena" we had an area we could go to for shade and drinks and rests. The day I stayed home wasn't so good. Have you ever tried sleeping while there's a battle re-enactment involving planes, guns, warships and so on just a couple of hundred metres away? Not to mention various display teams and bombers and helicopters and whatnot coming in overhead all day. The flat vibrates and not in a good way either.

Of course none of it compares to spending the full two days out and about, flirting and dancing and going on the fairground rides and generally having a ball all over the place, but let's be realistic.

So I'm praying that I'll be able to get out and about again this time round. However it's a lot hotter this year, and I'm having a worse time of it, so I'm not hopeful.

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7:25
Woken up by a pair of builders demolishing a wall outside the flat. There's a lot of this sort of thing - people who can work flexitime want to get their hours out of the way before the flight-time gets started so that they can go and enjoy proceedings with their friends and families.

I glare out of the window to see if I can demolish the wall for them with my Laser Eyes of Doom but fail, so I take in the knowledge that it's a beautiful day and resign myself to the pounding of the sledgehammers.

Settling back, I start to stretch and realise that while today isn't a Bloody Awful day, I won't be going to the airshow. Even if someone pushes me in my wheelchair I wouldn't be able to manage more than an hour, tops. Unfortunately there is one thing I have to do, and soon...

7:55
I head out to the Co-Op, which opens at 8am. Luckily it's only a block away and all I really need is some fresh milk (it's going off quicker than usual in this heat) and some fruit juice. The streets are already more crowded than they would usually be on a Thursday at any time of day, because every other local has had the same thinking as me. By 10am you won't be able to move here for tourists, much less get the things you want at the shop.

The lovely staff let me put my shopping in two bags and carry them back to my flat one bag at a time. I hadn't realised my arms were that weak today, but at least my legs, although painful, are bearing up.

11:30
Flights have started. Fighters by the sound of it. Flying in from the sides, so at least they're not rattling the windows by flying in over the houses like they have done before.

1pm
The earplugs are making the sound a lot easier to deal with though - I can still hear but it's very muted.

2pm
I could still hear the flat buzzer through the earplugs, which is a good thing because Pip turned up at the flat. Crisis time, he's broken up with Davina. Obviously we don't need the ins and outs of it on my blog, but I can't pretend that I'm upset about it - relieved would be more accurate. Anyway, the two of us got into a taxi with the littlun and went back to his, where we can still hear the planes (especially the bombers) but not at a level where we need earplugs.

6pm
Feeling slightly disturbed that Pip has phoned one of his friends to see what's happening this evening - and Davina is still with them. Although he didn't say it out loud, I reckon he was thinking roughly what I was, which involved words like "loyalty". Pip as a father is having some of the same issues I as a disabled person am - he's just not always a "convenient" person to spend time with, having to think about his son and nap time and buggy-access and all the rest of it.

6:30
Littlun's had an extraordinarily long nap which means he'll be awake enough to go and SEE the firework display tonight (as opposed to being woken up by it and crying for ages).

9pm
Pip drops me home and heads out to look for the group, and after a quick check of messages I curl up in bed. I've been having little dozes on the sofa at Pip's house while Littlun napped and Pip played on the playstation and got some stuff out of his system, but I need some proper sleep.

10:15
Poxy fireworks. Poxy window-rattling fireworks. Gaa.

11pm
Poxy people singing in the road. Gaa.

2am
Poxy chav woman yelling an argument with someone I presume to be her boyfriend over the phone.

2:30
Love, if you don't want to speak to him, stop answering your sodding phone! I'd put the earplugs in but it's not such a good idea to have them in overnight.

2:45
They've got to run out of phone credit or battery soon. People all over the street are leaning out of their windows and telling her to shut up, so she's alternating betwen yelling at her phone and yelling at them to "mind their own fuckin' business" to which the unanimous answer is "we'd love to!"

3am
Oh thank god.

5am
Excited tourists coming back from the beach (or possibly from Ness Point) yelling to each other about how exciting it was to see the sunrise from the most Easterly point in Britain. The sunrise is a beautiful thing, it's true, but did you have to wake me up about it?

7:30
Alarm goes off for me to give Steve his wake-up call. To my shame I hit it and rolled over and fell asleep again. But when I called later, it rang and rang so I assume he was in the shower.

8:30
Digging up the road outside my flat commences. I guess that means it's a new day and time for a new post...

If I could invent one thing

... it would be a beaker of water that I didn't have to get up to fill each time it got empty. I have fallen over that many blasted times this week while refilling my water, it is unbelieveable.

On the plus side, I have a plastic beaker with a capped straw and a lid, so spillage and breakage isn't too much of an issue.

(I just know some clever git is going to suggest having a big bottle of water in my bedroom. First of all, that'd have to be refilled too, unless I'm going to somehow lug between two and four litres of water for each day up the stairs and then store it all under the bed. And secondly, I'm often too weak to lift more than a litre to pour from.)

And, to make this post less moany, I have some peaches. They were in a punnet to "ripen at home" and they should be ready to eat tomorrow, and they smell utterly fantastic. Even if I don't eat the whole punnet, who cares, they're making the flat smell gorgeous.

The Philosophy Of Scooters

Thoughts that have occurred to me while trundling along, usually at 4mph.

You will get there eventually as long as you have enough charge in your battery.

Remember that your battery is finite. Keep an eye on it.
however
don't get so absorbed in watching the level of your battery that you forget to watch what is happening around you.

Examine the path ahead for dropped kerbs.

More speed, less range.

You need more juice to go up a hill than to go down it
however
if you go down a hill on the way there, you'll go up a hill on the way back.

You are not surgically attached to the scooter, and if it breaks down, you can call on another form of transport to help you out.

Sometimes you just can't avoid a pothole.

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Sorry I haven't blogged of late. Whenever I've thought of anything to say, I haven't been at the laptop - and as soon as I am, I can't think of it anymore.

I'm back "home" now, where I can't have a scooter because I'm still on the council list to be put in accessible housing. Until such time as accessible housing is available, I am stuck here in my first-floor flat that I started living in well before I got ill. One thing about a first floor flat, you can't get a scooter up the stairs, and even if I could the flat is too small to have anywhere to put it. So I'm in housing that half the time is inaccessible to me because I can't manage the stairs to get in and out of the flat (I crawl up and down them if I really must go out and there's no one to help me). And then even once I've got up/down the stairs, I still have to then move around the environs of the town - without a scooter.

I really really hope I can just move in with Steve soon and tell the utterly hopeless council where to stick it.

In the meantime, I'll just consider myself very lucky to have certain resources that I do miss at Steve's house (although not so much that I want to stay here). The proximity of family and one or two friends is nice. Having the beach within tottering distance is nice. Having some little shops on the same block is nice. Having a semi-decent bus service is nice.

Special mention to James who got sobbed at down the phone today when I'd fallen over for the Nth time while trying to get myself more water. I was sore and bumped and frustrated, not to mention thirsty, and grrrr. And on a day like this I can't just opt to Not Drink As Much. But he did a sterling job of calming me down a bit, so yay James :)

My Beautiful Shiny Scooter

My beautiful shiny scooter
Originally uploaded by girl_of_bats.

This blog entry has been a very long time coming. I've been feeling quite astoundingly awful and putting it off on the basis that "tomorrow I will be able to write an entry that will do it justice", but then tomorrow turns up and I feel even worse and am even less capable of coherent writing. The "Juicicles" entry is proof of this.

So anyway, I bought this scooter. It's the Cadiz, like I'd detailed previously, and it cost me £1,400, which is a lot less than the RRP for which I thank the lovely people at Leamington Shopmobility who don't screw customers over.

For readers who are interested in this sort of thing - I saved up for this out of my benefits money. You don't become disabled and have everything you need plonked in your lap for free. Because I have a lot of difficulty walking and am more or less housebound if I'm just reliant on my own power, I get a benefit called High Rate Mobility Disability Living Allowance which is supposed to cover all the costs to do with getting about that are incurred because I can't just walk places, can no longer cycle, and have a great deal of difficulty using the next cheapest mode of transport, the bus. How I use it is up to me. It could be taxis to and from a friend's house or it could be giving a friend some petrol money to take me shopping in their car or it could be to pay for Community Transport to take me to college (if I was at college) and it's also what you use to pay for a scooter or a motability car with hand controls and stuff like that. It has to stretch quite a way, really.

So, back to the scooter. Expensive, and only comes in red (maybe RMA got the paint cheap, maybe it's considered to be acceptable everywhere, I don't know). People see the colour and go "my gran's got one like that!" which pisses me off because I'm only 24! but Mark assures me it's unlikely their gran does have one like this. This is the spangly one with lights and suspension and EIGHT miles an hour, baby, which means I can drive it on the road as well as on the pavement if I do so wish.

Steve and I are already thinking modifications. The first was done quite quickly - we removed the original plastic faux-wicker basket and replaced it with a black metal one which looks much better. I mean, plastic faux-wicker, WHY? There's no good reason for it.

Modification Two is demonstrated here.

Further modifications being considered include a respray away from this Standardised Red, and Steve keeps wanting to put spikes on the front.

I am not having blue LEDs underneath, no way, no how.

But it's great having this. As long as I am having a good enough day to feel confident leaving the house on my own, I can leave the house on my own! OK so today I can't, as I can hardly stand, but that's not the point. If the milk has gone off, I don't have to wait for Steve to get home and try and persuade him to go to the shops - I can just go! If it's a beautiful day and I want to go to the park for a bit - I can! If I fancy an icecream - I can go get one! If I'm having a really good day and feel like looking round town, I don't have to pay £7 in taxi fares each way to be able to spend about an hour, maximum, looking about - I can trundle off at my leisure whenever I want to and I don't use up all my precious energy going from shop to shop!

As usual, click on the picture for biggererererer and to see more pictures.

Juicicles

Get one small bottle of Tropicana Smooth Orange juice (or whatever your favourite is).

Put in freezer. Ta-da! Juicicle!

On hot days, enjoy taking one around with you, and having a resealable bottle containing a lump of lovely cold ice and juicy goodness. Mmmm, delicious.

Then on a cooler day, suddenly fancy some orange juice, and spend half an hour gazing at a frosty bottle, willing it to get to the drinkable stage.

Bumnuggets.

Steve being wonderful

As some of you are no doubt aware, it's been a wee bit warm in central England the last couple of days. I like the sunshine as much as the next person, but I do prefer it to be accompanied by at least a little bit of a breeze. These temperatures are beyond a joke.

One of the symptoms of this charming illness is trouble regulating body temperature. Which means I'm one of the "at risk" groups who has to watch out. It would therefore have been nice if I'd been given this leaflet (pdf format) perhaps a month or so ago, before getting to the point where I desperately needed it.

Steve and I had spent most of today doing absolutely nothing, just lying on the bed and drinking water, with little bursts of using the computer or having a quick wash, but mostly just snoozing in the breeze from a nice big fan. Even so I had been getting lots of unusual *cramps*, particularly *weak muscles* and was even more *dizzy* than usual. I just notched it up to a bad day because of yesterday's busy-ness.

Eventually we decided that eating would be a good thing, and at about half five we went out to grab some food. On the way back I was getting even more *cramps* but decided not to worry. We got home and stuck a DVD on.

About 45 minutes into the DVD I started *shivering* and *convulsing*. I wasn't sure what was going on and was very *confused*.

Luckily Steve completely took over. He basically poured some water into me while trying to get me to tell him what I thought was going on (I didn't have a clue and was just burbling), then got me up the stairs to our room where the fan and everything is. He helped me out of my clothes, put me on the bed on my back, and then soaked a towel in cold water and put it over my front. As I started to settle, he went downstairs and got an ice pack out of the freezer which he rubbed over the towel to keep it cold. After a bit, he helped me to sit up and made me drink a glass of water, then lay me down on my front and put the towel on my back.

I started feeling better quite quickly, and within about twenty minutes I was lucid again and a bit more comfortable, although I'm still quite far from being 100% even by my usual standards.

Hopefully tomorrow will be a little cooler, but at least if it isn't I know what to watch out for now.

Burnt Offerings

burnt offerings
Originally uploaded by girl_of_bats.

On Saturday Steve and I had been invited to his friend Ed's housewarming barbecue. Steve lives just round the corner, so he'd agreed to help out with setting up. I in the meantime was over the road having an aromatherapy massage.

I hadn't quite thought that one through really - on the one hand, the massage meant that I was in more of a position to enjoy the afternoon properly, however the thing about aromatherapy oils is that you're supposed to leave them on for quite a while, not wash them off and apply sun cream. So I tried to find the middle ground by wiping away the excess oil from the parts of my skin that weren't covered, wearing long but thin trousers and a hat, and staying under the sunshade as much as I could get away with. I'm not burnt today so I must have got it about right.

It was a great party. Click on the picture to see more photos. There's a gap of about four hours where there are no photos, as I had gone back to Steve's to have a sleep, but at about 9pm I went back for another hour or so which was nice even if I was a bit spaced.

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.

George

George and me, having a cuddle
Originally uploaded by girl_of_bats.

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)

Scooter-Power!

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.

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.

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...

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.