Sunday, December 31, 2006

New Year's Eve

I've always hated New Year's Eve, almost as much as birthdays. I can still remember at school how the other girls kept going on about what they were going to have as New Year Resolutions. I don't think I ever made one, and I'm not going to start now!

New sheets for the New Year

We are celebrating the New Year by putting our new sheets from IKEA on the bed - or rather John is. My share of this enterprise consisted of shifting some of the huge piles of stuff that have been on the bed since I began wrapping the Christmas prezzies. These piles have been growing ever since, and last night I kept waking up because I couldn't stretch my legs out. Plus I was so thirsty I had to go downstairs around 2am to get a bottle of Tesco's Spring Water (our tap water seems to be over-chlorinated a lot of the time, most unpalatable!). By which time I was so wide awake I logged on and picked up email and did a spot of web browsing. Nicely tired after that, so got some more sleep, though disturbed by J snoring (as usual!).

Super breakfast - lambs kidneys with bacon, fried up leftover mashed potato, and half a tomato... Tomato flavourless as usual -what do the supermarkets do to tomatoes to make them so tasteless? I'm hoping that'll count as at least half a portion of fruit, but seeing as it tasted of nothing maybe not.

We're having gales and very heavy showers today. Our side windows are leaking - shows up how they really need washing as they have clean streaks down them now. At least the strong wind means the showers are blowing over quickly, but I worry about the trees across the side road blowing onto our roof. And it's getting noisier too - guess the wind strength is still rising.

John's heading out to Otterspool Prom to get some (very) fresh air and see the waves on the Mersey. Rather him than me! He's declined the use of the camcorder to video the river - reckons it's too damp. Might spend my Xmas cash on a waterproof cover for it, if they're still available.

A quiet evening is planned, a bottle of Champagne (though not as nice as the Mumm de Cramant Sarah brought from France for Christmas) will go in the fridge in a while, and I think we'll be watching Jools Holland's Hootenanny later on. Be nice to see Lily Allen and The Zutons but I could do without the rest, especially First Battalian of the Scots Guards at midnight. We usually go out and dance* around the tree on the pavement then (so missing the bagpipes) but it may be too wild and windy for that this year.

Happy New Year!

* I stagger rather than dance - vestibular dysfunction don't lead to good enuff co-ordination for decent dancing!

Saturday, December 30, 2006


Odd kind of day. Sarah left this morning, John went to get new glasses but couldn't (next week) so came home earlier than I expected. He went back to town later to take Sarah's bags down for her to get the train. Then did the shopping on the way home, now he's out swimming.

We seem to have lost the current Radio Times, both of us have searched all the likely (and unlikely!) places we can think of, but no show. Will prob turn up in three or four weeks time when it's out of date and useless.

Must try and make a few New Year cards for people I didn't manage to send Christmas cards to - practically everybody this year unfortunately. But already too late to post. I wish I could be more organized, but the way Life keeps happening it's just not possible.

Here's one of our cheerful Christmas Gnomes. We have two of these sitting on our mantelpiece, painted by the girls in a Guide away weekend, once upon a time and a long time ago. I feel like Christmas has arrived when I get these out of the box in the loft and put them out each December.

Christmas Gnome

Tuesday, December 26, 2006

Christmas Day 2006


Sarah left about 10.30 to fetch Mum and Dad over from West Kirby. Meanwhile Helen arrived and dysoned the hall and living room, and she and David carried piles of boxes of books up to Sarah's room so that the living room was relatively free of clutter. John slaved over a hot stove, and finally the turkey was ready.


The Girls did a grand job with the table, and rushed around dishing up while John carved. Sarah acted as Wine Waiter, a bottle of Mumm Champagne that she bought when she went champagne-tasting in Paris in the summer. It proved to be a bit on the lively side, but the only casualty was a soggy paper serviette. And the champagne was delicious.

Sarah wine waiter

We had all the trimmings with the bird - sprouts, carrots, parsnips, roasties, cranberry jelly, bread sauce (with a clove-studded onion in of course!), chipolatas, sausagemeat stuffing and herb stuffing. This was made according to Mum's recipe, Sarah was curious where it came from. "The Radiation Cookbook" was Mum's reply. Conjures up strange ideas now, but her first cooker was a gas cooker, and I think the book came with the cooker.

My Christmas dinner

There was some talk of Christmas Pudding when we'd cleared our plates, but everyone was too full.

Xmas me

So we headed to the living room to open some parcels. Lots of chocolates! Dad was feeling pretty tired I think, seemed to be falling asleep all the time. Of course they both have a snooze in the afternoon usually, so I guess habit caught up. They left quite early - about half three I think. I had a feeling that there was a parcel missing, so checked under the tree. And there was one last present for Mum and Dad - Jacobs cheese footballs too, so it would have been sad if they'd missed it! But I hammered on the window, and John came in and fetched it. At least it meant they had another parcel to open when they got home.

Christmas tree in the evening

Tree finally went up on Christmas Eve - it's not enormously tall, but it's sure WIDE! We couldn't find the tinsel, or the crib. Think there must be another box lurking in the loft still. Let's hope we find it next year!


Monday, December 25, 2006

Merry Christmas!

Merry Christmas Folks!

I've spent the last two days mostly in bed, wrapping parcels. I wish I'd taken photos of the ones I did for John's Mum, one totally over the top with feathers, the other very small and tasteful, decorated with a tiny red braid with blue and white hearts on it. That one was finished off with a miniature gold luggage label as a gift tag. We gave her the parcels yesterday when she visited with Helen and David.

Meanwhile, the Christmas Rats were investigating some of the parcels.....

The Christmas Rats

... before snuggling up for a final snooze with their friends the Christmas Cuddlies before they get wrapped up. You'll be relieved to hear that the kittens are staying with mother cat. Bagpuss seems to have fallen asleep again and toppled backwards. Maybe he's been at the brandy for the Christmas pudding!


If you look hard in the top left of the picture you can just see Rescue Kitten* peering round my pillow to see what all the fuss is.

*He was a gift last Christmas. You donate in someone's name to the Cat Protection League, and you get a kitten cuddly to give to that person.

Tuesday, December 19, 2006

Charon Way

If you are here to read my post on the NICE guidelines for ME/CFS it's here.

Yesterday John took his final day of leave this year. We headed for Charon Way. Up the M62, turn off for Gemini Retail Park... It always seems a good choice of name for that road! The road to retail hell.

In other words we made the trip to IKEA in Warrington to pick up the Christmas candles (Jubla - they don't drip as badly as most candles tend to do). We also managed to spend a huge (for me/us) amount of money. The bedding I had wanted to buy in the Spring (King size, then out of stock) was in store so I thought better strike while the iron's hot...

Then there were the truly eye shattering Christmas coloured cushions that we just couldn't live without. Very Op Art or Bridget Riley maybe. Complementary colours really do things to your eyes! We may put them away after Christmas, bring 'em out again next year. Not sure my eyeballs could live with them year round.

IKEA cushion

We both very tired after! John pushed me in wheelchair around, hard for him. I in wheelchair, pushing self for detailed browsing. But it was worth it for me to take a look at what's on offer.

So tonight we are having a candlelit evening to celebrate. But not quite like Hyacinth's candlelit supper I suspect!

Friday, November 10, 2006

NICE is nasty, and NHS plus is too

NICE is in the process of writing Guidelines on ME. These are likely to impact on the way patients are treated for years to come. And if they are accepted as they stand they will have extremely negative affects on the majority of ME/CFS patients.

Chronic fatigue syndrome /Myalgic encephalomyelitis (CFS/ME) guideline consultation)

"A clinical practice guideline on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is being developed for use in the NHS in England and Wales. Registered stakeholders for the chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) guideline are invited to comment on the provisional recommendations via this website."

"Note that the provisional recommendations presented here do not constitute the Institute's formal guidance on this topic. The recommendations are provisional and may change after consultation."

Consultation dates: 29th September - 24th November 2006

The full version (Maggie's comment - 269 pages!!!) describes the evidence and views that have been considered, and sets out the provisional recommendations that have been developed.

The (NICE) short version (Maggie's comment - 48 pages) presents the provisional recommendations only with some brief supporting information.

The ME Association's response to this is better than anything I could try to put together.


Break for something positive! ;-) Had a wonderful sunset yesterday evening.

Sunset from my bedroom window


The NHS is already providing guidance to employers. NHS Plus have gone ahead and published advice for employers, health care professionals and pre-empted the NICE Guidelines. This page gives links to the various PDFs.

These are:
Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (64 pages)

Occupational aspects of the management of chronic fatigue syndrome: evidence-based guidance for employers (8 pages)

Occupational aspects of the management of chronic fatigue syndrome: evidence-based guidance for healthcare professionals (12 pages)

Occupational aspects of the management of chronic fatigue syndrome: evidence-based guidance for employees (8 pages)

I am particularly concerned to read this in the booklet for employers:

"Is ill-health retirement an option?

Ill-health retirement is a possible
outcome although it should only be
considered if appropriate treatments
(such as CBT or GET) have been
explored. Where other conditions such
as depression or anxiety are present, they
should be treated." (page 6)

I would imagine that anyone who is ill enough to seek ill-health retirement would be at the more severe end of the scale, so CBT or GE would surely be inappropriate for these people? Even if they were not too badly affected (though bad enough not to be able to work) there must be a danger for a high percentage (almost certainly over 50%) of moving from moderately to severely affected. I am reminded of Catch 22.

The booklet for employees says this:

"Could I take ill-health retirement?

This is not a first choice. It is always
better to try some of the things discussed
above first. Research shows that most
people feel better about themselves if
they can work. If you have had your
illness for some time, you may come
under the Disability Discrimination Act
1995. This Act requires your employer
to make reasonable adaptations to your
work in accordance with your disability.

CBT and GET increase the likelihood of
people with CFS returning to work.
While these treatments may not be
suitable for everyone, you should explore
them before considering ill-health
retirement." (page 7)

I guess it all depends on how you interpret the word "explore". I bet most insurance companies would interpret it as "compel", also many employers.

As for the booklet for healthcare professionals, it makes my blood boil!

Under "What Causes CFS?" (page 4)

The perpetuation of CFS may be attributed to an individual’s response to an illness. Factors may include:
• inactivity, deconditioning, weakness and fatigue brought on by excessive rest after an acute viral illness
• inappropriate avoidance of activity as a coping mechanism leading to further deconditioning
• personal or work conflicts and fears about the condition itself.

(page 5)
Interventions should aim to address not just the biological aspects of CFS but also the various psychological, social and occupational factors that may delay the recovery process. There are currently two interventions supported by good quality evidence; a third is the subject of a large randomised controlled trial (RCT)."

"Not everyone responds well to CBT, however, and a number of factors may limit its effectiveness. These include poor social and work functioning before becoming ill; low sense of control over the CFS symptoms; passive activity patterns; excessive focus on bodily symptoms; and taking medical retirement or disability-related
benefit during the treatment." (page 6)

(page 8)
Patients who are still working should be advised to stay at work, even if they feel tired. Time off work is likely to exacerbate the symptoms and make recovery more difficult. Those returning to work should discuss with their employer – and preferably with an occupational health professional in consultation with their GP or other treating practitioner – how to build up their working hours and workload over time. Patients should be advised against seeking early medical retirement, at least until all rehabilitation strategies have been explored. [D]

[D] Evidence from non-analytical studies or expert opinion.

I haven't had time to read the full NHS Plus guidelines yet. But the Guideline Development Group (pages 7 & 8 of the PDF) contains many of what PWME (People with ME) would regard as "the Usual Suspects":

Guideline leader
Dr Karen Pratt
Specialist Registrar in Occupational Medicine,
BUPA Wellness, London

Director of NHS Plus evidence-based guideline project
Dr Ira Madan
Consultant Occupational Physician,
Guy’s and St Thomas’ NHS (Foundation) Trust, London

External assessors

Professor Michael Sharpe
Professor of Psychological Medicine and Symptoms Research,
School of Molecular and Clinical Medicine,
University of Edinburgh

Professor Peter White
Professor of Psychological Medicine,
Wolfson Institute of Preventative Medicine
(School of Medicine and Dentistry),
Queen Mary’s University of London

Guideline Development Group members

Dr William Bruce-Jones
General Adult and Liaison Psychiatrist,
Avon and WiltshireMental Health Partnership NHS Trust

Nikie Catchpool
Occupational Advanced Practitioner Therapist,
Bath and Wiltshire CFS/ME Service,
Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Bath

Professor Trudie Chalder
Professor of Cognitive Behavioural Psychotherapy,
Institute of Psychiatry, at the Maudsley,
King’s College, London

Chris Clark
Chief Executive, Action for ME (until March 2006),
3rd Floor, Canningford House,
38 Victoria Street, Bristol BS1 6BY

Sharon Hynes
Head of Human Resources and Training,
BUPA Wellness, London

Dr Meirion Llewelyn
Consultant Physician,
Infectious Diseases/General Medicine,
Royal Gwent Hospital, Newport, Gwent

Dr Jon Poole
Consultant Occupational Physician,
Dudley NHS Primary Care Trust,
Dudley, West Midlands

Suzanne Roche
Research Assistant,
South London and Maudsley NHS Trust, London

Gael Somerville
Occupational Health Nurse,
British Broadcasting Corporation, London

Bella Stensnas
Research Assistant,
South London and Maudsley NHS Trust, London

Conflicts of interest
: none declared.

I do not understand why a private health insurance company's employee should be the "Guidelines Leader" for NHS Guidelines. And to say they have no conflict of interest is laughable. I guess Prof Simon Wessely is too bound up in dissing victims of World WarI to be bothered with this stuff any more.

And Dr Crippen, have you heard of an "Occupational Advanced Practitioner Therapist" before? Another to add to your lists? ;-)

Tuesday, October 31, 2006

A visitor to the caravan

One of the hens from the farm up the hill came a-visiting nearly every day the last couple of weeks I was at the caravan.

Wednesday, September 06, 2006

Hummingbird Hawk Moth

I put together a (very) short video of the humming bird hawk moth sipping nectar from the Buddleia. This was taken using my Canon camera. I have some better footage shot on the camcorder, but haven't figured out how to get it on to the computer yet.

Saturday, August 26, 2006

The hedge is chopped!

Trefor and his workmates were back again yesterday morning. I took this photo just as they started work.

The field as the final phase of work on the hedge begins

And this is what the field looks like now they've finished. I suspect the owners of the houses at the bottom of the field won't be too happy with the result, but I am ecstatic - I can actually see boats on the sea again, been watching four of the Seabirds out racing this afternoon.

And now the work is finished!

I had completely forgotton what the "proper" view was like. It's strange to see the sudden fall away of the ground, with my vestibular problem I feel almost as if I'm going to fall down the field and straight into the sea if I don't hang on to something!

It's going to be great watching the racing next year (hope the trees don't grow back too quickly!). I didn't get to see any of the starts or finishes this year as the only way I could see that far was to climb the steps in the hedge... And I've had too many falls off those steps to want to risk that unless John builds me some sort of hand rail.

Friday, August 25, 2006

The Abersoch Chainsaw Hedgeacre

This is what the bottom of the field looked like yesterday morning.

The Abersoch Chainsaw Hedgeacre 1

Yesterday they came and began to top the trees. Began by taking off all the lower side branches, then a chap with a chainsaw got into the bucket on the front of the tractor and was lifted up to cut off the higher branches. They are leaving them around 7 foot high (at a guess) which is just an amazing improvement.

I took a stroll down to the bottom of the field (well, more of a slow stagger actually!) to take the rubbish down to the bins. Took my camera too, so here's some close up shots of the work in progress.

The Abersoch Chainsaw Hedgeacre 3

The Abersoch Chainsaw Hedgeacre 4

The Abersoch Chainsaw Hedgeacre 6

By the time they'd finished in the evening the whole of this side of the trees had been lopped down, and they'd started on the lower field.

Hedge in the evening

The difference really is amazing. Can actually see the Moorings from the field now. How I wish this had been done 3 weeks ago so I could have followed the Seabird races. Ah well, lets hope the trees haven't grown up too much by this time next year.

The Rivals

As I was getting ready to barbie in the evening I heard a strange sound in the sky, and looked up to see the motor-parachute again. A very strange vehicle! The driver? pilot? has a motor with a big fan behind him, rather like the ones you get on those boats in the Florida Everglades, though possible not quite as big.

Two fliers

Wednesday, August 23, 2006

Abersoch days

Peacock butterfly

Quick update - spent some time at the caravan earlier in the summer, then went back home for a family party, meant to get back sooner than I managed, but even so had a week to prepare before John began his 3 weeks holiday here in Abersoch. I was in Liverpool for much of the hottest weather, but our kind neighbour Marie here at the caravan watered the tomatoes, beans and sweet peas for me. Lot of rabbit damage - it's a bad year for bunnies!

Most of the caravan guests (Sarah, David and Rachel) left on Sunday, John went soon after 4am Monday morning to drive back to Liverpool. It seems very quiet here now! Bit of a strange holiday this year, with John driving back to Liverpool twice to see his Mum who was admitted to hospital for an emergency operation 7 August if my memory serves me right. She's in a convalescent home now and is doing OK, hopefully will be home in a week or so.

Tortoiseshell butterfly

Monday had some nice sunshine, spotted two hummingbird hawk moths on the buddleia shortly after midday, they hung around long enough for me to get out the camcorder and try get some better shots (not had time yet to look and see if they are better though!) than those from the camera a week or so ago. The painted lady was back too, got one decentish shot on the osteospermum, but when I tried to get closer to it on the buddleia it took fright and flew off - seems very alert and shy. Buddleia is generally covered in butterflies every time the sun shows even slightly - small tortoiseshells are the most frequent visitors, but there's a single peacock as well as the red admirals, large and small whites and commas. No wonder it's called the Butterfly bush!

Painted Lady on the patio

Around 6.15pm there were clouds of smoke went up from close by, followed shortly by NeeNaa sounds. Today I finally went and checked out the Abersoch website, where I discovered that a motor boat caught fire and exploded just off our local (Marchroes) beach. Fortunately everyone onboard escaped, but the boat was completely destroyed.

Yesterday morning Trefor arrived and began to strim the bracken at the bottom of the field where it had escaped through the fence. Then he pulled out a couple of posts... He called in at Rolf's (across the field from us), the pair of them walked up into the field behind us, and I caught them on the way back. The fence is coming out, and the trees at the bottom of the field will be cut back later this week or early next week - Hurray!

I think I saw the hummingbird hawk moth again briefly in the morning, but there are some other fast and fluttery moths around the buddleia too. Though these land on the flowers to feed. So I may have confused one of them, but the hawk moth looks pinkish in the blur of its wings, and its bum looks a bit like a miniature skull, so I'm fairly sure that I spotted one.


Soon after midday today Trefor came back with a blue tractor and trailer, and hoisted the remaining fence posts out of the ground, loading them into the trailer. Then he collected up the bracken strimmings, along with all the garden rubbish that had been chucked over the (ex) fence, dumping it all in the bottom field. Will take a look tomorrow if it's dry as I need to take a bag of rubbish to the bins (that grey breeze-block thing just below the white bungalow on the right in the picture).

It's nice to see the fence go, and I can't wait for the trees to be topped - can hardly see any of the bay this year, only spotted the Seabirds racing once. Hopefully the trees at the back of the field will get chopped soon too, as they are a home to a ginormous flock of starlings in the autumn which makes a lot of mess for the folks who back on to them.

Red Admiral on Buddleia

Wednesday, May 31, 2006

Abersoch Sunday

Seeing as it was Whit weekend we had planned to go to Abersoch, but I'm still recovering from the London visit so didn't make it. But John went down on Sunday for a day trip, and took lots of photos so I could see what (if anything!) had made it through the winter.

Abersoch Sunday

The oregano is doing well - look forward to seeing it covered in bees when it flowers. And I think that must be a hydrangea behind it, though I must admit Idon't remember still having one in a pot. The agapanthus has plenty of leaves, and one flower about to open, but John thinks there may be a further two flower spikes on the way. I think we may well try to split it this year - we meant to last year but ran out of time and weather and energy!


The agapanthus is very out of focus, but it's interesting to see the hedge in the background. I think there should be a jasmine in there somewhere, probably planted close to the bamboo stakes you can see. Looks like it didn't survive the hard winter - not only snow but hard frost - apparently the harbour began to freeze over at one point.

A few things have survived...

The bottom left hand pot is looking very sparse, but it got dug up by rabbits last year, and I didn't have the time and energy to replant it. I've bought some new succulents to plant in it this summer. The ice-plant seems to have some growth, but looks as if it might be sensible to have it out of the pot, remove the grass, and replant in some nice gritty compost.

There's lots more pics, but I feel a bit depressed by it all - I should be there planting and getting rid of more of the grass, and trying to maybe get cuttings off the things that are growing but have died back badly.

At least the plants at home are doing OK! Have 2 kinds of nasturtium, Canary creeper, possibly some Black-eyed Susan all sprouting. I have planted some Datura Ballerina Mix but it still hasn't shown any sign of sprouting... Soaked it overnight on 25 May, planted 26 May, so may well be it's just not an ultra fast grower. Besides, the other stuff all went in about a week earlier I think.

I bought in tomato seedlings - Tumbler (a bush variety, so don't need complicated stuff like taking out the side shoots), and they are doing pretty well. I did have them outside for a few days (brought in at night) but just recently it's been so windy and chilly I've kept them in since last week. Hopefully the weather is finally taking a turn for the better, so will be trying to get them acclimatised to the great outdoors! Only pics I have are over a week old, must get some of all of my seedlings if only for my records.

Tomato seedlings

Tuesday, May 23, 2006

Some posts from May 12, International ME Day

Small Town Scribbles: ME or Chronic Fatigue Syndrome or What You Will

Interesting blog entry for May 12, International ME Day.

And this chap dyed his hair blue!

And another May 12 entry here.

Monday, May 22, 2006

Sarah's garden

Saturday May 13

Spent far too much money at the garden centre near Sarah's - mind you, I did get a nice comfy pair of lined gardening gloves as well as some nice plants. It's on the side of a railway bridge, so has lots of terraces and little paths climbing the side of the railway. Met a little girl with her granny and Mum playing hide and seek in the maze of narrow pathways. :-)

Got a little Acer, jasmine, and a load of succulents for a pan at the caravan (actually the top of one of those pot-bellied barbecues that the legs broke on). It was beginning to look a bit untidy last year, so it'll be nice to replant it. Think we're going down to Bwlchtocyn Whit weekend, but not if the weather's as foul as it is today!

Some of my purchases from the Garden Centre

Last year's morning glories seeded profusely, I harvested some and planted some (soaked and just starting to sprout) seeds to grow on. I took some down for Sarah, at least 3 had sprouted by the time we left. Meanwhile we hauled last year's glories pot back to the front of the house and I planted about half the sweet peas out in it, after forking it up well and adding some organic fertilizer. Now I have loads of glories coming up in that pot too! I shall transplant them to small pots as they get big enough to handle - assuming the rain stops for long enough!

Astilbe and mixed pot...

But to get back to Sarah's garden... She bought a couple of really nice bronze coloured ceramic pots, and some really super plants. We had taken down a hosta that we had grown on from an offset last year, so that was planted up with some ferns - all like a similar shady and (hopefully) damp spot. May not survive if there's a drought, but not too bad to water just a couple of pots that happen to be outside the kitchen window. All the other things were lovers of dry conditions, or will be once established.

Sarah's pink bush

This is a Leptospermum. I figure it will manage without much water as it has very tiny, needle-like leaves. Once it has bedded down I hope it will get by without having to be watered much or at all. Much weeding went on before this could be planted!

Gardeners in action!

Sarah did the deep dig weeding - they have a lot of bindweed. Here's a good chunk of root that Sarah has managed to get out. But more comes every day!

EEEEK bindweed roots!

Of course we had very close supervision from next door's cat!

More photos are up on Flickr.

Croxted Road Garden Centre
Sarah's Garden
May 12

Sunday, May 21, 2006

A visit to London, and to Downing Street

We had a fun day on Friday (May 12). Managed to get showered and dressed early, sorted out papers, John got wheelchair out of the car, and I sat in it in the sun while we waited for the cab to arrive. Got to DoH a bit after 10 I think.

The demo outside DoH was small, my guess is around 20, but no more than 12 or so at once. The sun shone, and there wasn't the chilly breeze blowing up from the river that we had the last 2 years. It was nice to see some familiar faces - Gus, Ciaran, Stuart, and meet some new people too.

Some of the more able-bodied (carers) accosted folks as they passed and asked them to sign the petition. A lot of signatures were obtained, from people from all over the world (Downing Street is just across the road and is a popular tourist attraction).

Since I had some copies of the professionally printed copies of the short Canadian Guidelines (which luckily arrived 2 days before we drove to London), John wheeled me into the DoH and I left a copy for the attention of the Chief Medical Officer along with a Co-Cure flyer. Someone said to ask for a receipt, so we did. The girl behind the desk initially tried to refuse to accept the guidelines, but did in the end.

Me at Number 10

I made a presentation of documents from the MEACH Trust to 10 Downing Street. Usually they only let 5 people in through the gates, but since 2 of us were in pushed wheelchairs our carers were able to come in too. After the presentations were made to No 10 we walked (or were pushed!) to the House of Commons. If you are in a wheelchair you don't have to go and queue to get in - there are steps at that entrance. You get to go in at the Members Entrance, and use the Members lifts. Everyone is incredibly helpful and kind. I wish the rest of the country was like that!

The policeman who escorted us to the Lobby said he had a friend with ME, so he was very interested in the demo. He goes round to help her out as much as can, he said she was very up and down with her symptoms - good days and bad days. I gave him one of the short version of the Canadian Guidelines.

The Lobby is wonderful - mosaic ceiling with all the symbols of the UK - roses, daffodils, shamrock, thistle, and patron saints. Amazing floor tiles too, and the chandelier in the centre is gobsmacking!

I was the only person lobbying, my MPs assistant came to meet with us, found a quiet corner and I handed over the papers I'd taken. Another copy of the short Canadian Guidelines too.

Then we went up to Committee room 6, where about 10 of us had a talk about what we might do next year, as May 12 falls on a Saturday. Nothing finally decided, but the suggestion that I think best was that we lobbied on Wednesday (9th) since that's the day of PM's Question Time so most MPs are likely to be there. We talked till about 3.30, then packed up and left. No MPs came to see us. Di Newman's (organiser) MP had said he might be able to but didn't. Met up with Gus and a young man from Peterborough - Steve? outside, Ciaran had come with us in the lift as he can't easily manage stairs.

Walked (me pushed) along to where the IiME conference was on (Insitute of Mechanical Engineering, 1 Birdcage Walk) in hopes we could manage to meet up with Mary Schweitzer when the conference ended. This was more complicated than it might appear, as we haven't met before, so we didn't know if she'd find us. (the hotel said she wasn't staying there when we phoned in the morning)

But John went in to recption and found out that she was registered at the conference and sent in a note, so she at least knew we were there. We all went and sat in St James Park until it became obvious the conference was finishing. I was wondering if Mary would find us - I had one of my Co-Cure flyers laminated, so I had that taped to my walking stick as she would recognise the Co-Cure sign. We saw lots of people come out, but eventually we decided to get a cab home.

Had to cross over to hail cab, as we were waiting a young lady came down the steps from the Institute of Mechanical Engineering. She came up to us (I think she thought we'd been at the conference cos I was in wheelchair)... Turns out she was someone I "met" on the Co-Cure Message Boards! Kate.

She said Mary was still there, went in and found her for us. :-) Kate had met Gus and Ciaron at the last APPG, so went over to have a chat, while we whisked Mary back to Sarah's house in Herne HIll, and we had fish & chips from Olleys (best fish and chips in London).

Mary and me

It was so much fun meeting Mary, I have known her online about 10 years I guess, lovely to put a face to the name. :-) She is on Ampligen, which she has to have infused twice a week. She tried coming off it after the original trial was over, but got much iller again. She said it has given her her brain back. :-)

John, Mary and me again

See that tatty old bench-table in the background? John spent a happy Saturday morning breaking it up into pieces, and retrieving the very heavy duty bolts that held it together.

Mary left for her hotel about 9.30, and I got into bed. Sarah and John were watching Green Wing (taped earlier) and it was funny, but I was so tired I just fell asleep.

Sunday, April 30, 2006

I'm still alive!

Well, quite a lot's happened since I last posted.

Helen, our younger daughter, got married to David on Friday November 12th. The marriage took place in a really lovely hotel over on the Wirral, the Brook Meadow hotel. The staff were incredibly helpful and friendly, I would wholeheartedly recommend the hotel to anyone looking for a wonderful place to get married.

Helen and David's Wedding

It has quite an interesting history. It was built in 1860 by Major Bibby (of the Bibby Line, Liverpool). A private chapel was added in 1900, now used as a function room - we had the Wedding Breakfast in there. This was turned into a games room in 1903 by its new owner, and the house remained as a private residence until 1968 when the owner leased it to the Order of Franciscan Monks. In 1983 the house was sold and turned into a hotel, now owned by a local company - AE Reynolds PLC.

John and I were really amazed at our room, well I guess it's a bit insulting to call it a room, it was more of a suite! We had a sitting room with a comfortable sofa and easy chairs as well as a huge coffee table and a rather nice china ornament of a quail. The bedroom had windows looking out over the fields at the back of the hotel, and we spotted a squirrel (though sadly grey not a red) a couple of times. But it was the bathroom that really got me - the bath alone was about the size of our bathroom at home! A double sized bath with jacuzzi. I could get used to living like that! And even some of the rather strange paintings scattered around the room had a nautical theme, so John was happy.

There's a small picture of the chapel, where we ate both the Wedding Breakfast and Sunday breakfast (a rather hung over party!), on the Brook Meadow Hotel website. There are lovely gardens, and happily the sun shone for long enough on the big day for the wedding photos to be taken outside. But only after a few drinks of course!

A few drinks

And even John got dressed up, I don't think I've ever seen him looking so posh!

John looking smart for a change!

But it was Helen and David's day.

Helen and David in the gardens

The meal was good, of course with a vegetarian option (our Helen has been a veggie since she was around 16) and the pudding was fantastic!

My pudding!

I think my Mum and Dad really enjoyed themselves though I feel the general hubbub was something of a problem for them. Here they are towards the end of the meal. Getting a bit tired by now I think.

Mum and Dad at Helen's Wedding

Chrissie, who used to work with Helen at the Women's Hospital, gave the cake as a wedding gift.

The Wedding Cake

Several of the party stayed overnight, the disco went on till after midnight. And so it was that the next morning David's car had been decorated.

The Morning after

John and I stayed over on Sunday night too, spent Sunday afternoon having a trundle along a nearby canal. But pictures of that are on the computer that died yesterday, and I haven't set up the external hard drive on this laptop yet.

On the gardening front my sweet peas are sprouting merrily, but the canary creeper only 2 seeds have germinated so far. The primroses are still flowering in the back yard, and the violets came into flower in the last week. The slugs have been seen already, but we have the nematodes to attack them with tomorrow. Several snails have taken flight over the wall into the alley behind. I still have rocket and schizanthus to sow, and the seeds that I harvested from last year's morning glories.

Morning Glories by our front door

I'll try and update a bit more often - want to get back into the habit. And stil have lots of catching up to do!