Sunday, December 31, 2006

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 :)

Tuesday, December 26, 2006

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...

Sunday, December 24, 2006

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.

Friday, December 22, 2006

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.

Tuesday, December 19, 2006

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.

Tuesday, December 12, 2006

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.

Sunday, December 10, 2006

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.

Wednesday, December 06, 2006

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.