Dr Crippen on ME again

Dr Crippen has written about ME again following the sad death of Kay Gilderdale.

I am glad that he has once again felt able to post about ME. Please be gentle with him if you respond to his post - he is a doctor who is at least willing to engage with us.

Still alive I think

I've neglected my blog for such a long time. Life isn't particularly easy at present, but it's stuff that I can't blog about, or not until it's over, and maybe not even then.

We went to the caravan at the weekend, arriving in the pitch dark. Was desperate for the loo, and somehow (prob a mixture of the vertigo and the darkness) managed to fall headlong on the patio, smashing my right temple onto the paving. Very shocked, couldn't warm up afterwards, grazing from eyebrow to hairline. Now, three days later, I have a truly technicolour black eye.

Feeling very miserable about all the other stuff that's going on in my life.

But we have my favourite visitor back for a while, and he is a great comfort. Thank God for dearest Brodie!

Pension age

Was 60 yesterday! Here's a picture Sarah took of me.



Had a wonderful day, culminating in a rainbow and star watching.

Lots of nice prezzies, more to tell when it isn't so late!

Abersoch eventually

For anyone curious, you can see the details of my parents' flat here. And yes, as it says, we have had an offer. Not counting any chickens yet as the surveyor is still to go in.

We finally got down here to the caravan lateish on Sunday. We've been eating courgettes ever since! Unfortunately we won't be eating them for much longer, as both plants only seem to be putting out female flowers, so unless there's some other plants nearby it seems unlikely that the flowers will get fertilised.

Tomatoes are all still green, but John was reliably informed that nobody round here has any red ones yet.

The passion flower behind the shed is doing really well.



The hydrangea at the side of the shed (on the patio side) has HUGE flowers this year. There are loads more buds coming, so I'll probably cut the first blush off and take them to Mary (MIL) to give the new buds a bit more space.



There's a really strange hole in the ground beside the shed on the field side. Anyone have any idea what it is? Looks too big for a mouse or an insect to me. A mole maybe? The white thing is an IKEA night light to give sense of scale for those who are unfamiliar with inches.



We seem to have mislaid the life jackets, so Sarah has bought us some new ones. We'll check the flat and the house, I'm sure they will turn up eventually, and will be useful as spares.

The sailors did two races yesterday... Came last in the first one, and next to last (improvement!) in the second.

We seem to have fewer butterflies this year, but it has been rather damp most of the time so far. Plenty of cabbage whites, but only seen one peacock and one red admiral. And a fritillary, and one of those orange and brown ones that I can never tell what it is - you have to count the spots in a wing spot and they usually fly away before you get a chance!

Flat up for sale eventually

We are supposed to be in Abersoch now, but I am too knackered to make it, hopefully later today.

Friday John began his holiday, we went to one of the 3 estate agents who valued my parents' flat for us, and it's now on the market. Or it will be when the HIP is paid for.

I'm looking forward to getting back - to check the tomatoes and courgettes and see the flowers. Here's how it all looked a week ago.

Been busy and then exhausted

Thought I'd begin with a few lamb bananas.

This one is by the Mersey Tunnel ventilation shaft building.



And this is in Kensington, just up from the Royal Liverpool University Hospital.



Outside Lime Street Station entrance.



We had nearly a week away in Abersoch... Didn't make it till the Monday though. The previous week we did two test drives, and ordered a new Motability car. So we were fairly knackered after that and decided to try and have a rest day before heading for Wales.

Oh the car? Another Grand Scenic, but a diesel this time. With heated front seats, a sun roof, and a dash mounted 6 CD changer. Oh, and a rear parking sensor. If I get back to driving again I'll need it! It's going to be dark blue again, but this is much darker than my current Big Blue. Delivery mid September we hope.

The courgette plants are doing OK, and we had a tasty courgette and cheese starter for one meal.





We did have some nice sunny weather, and even some warmish weather, but this is the only picture John took of me this time...



At least I have a lovely garden to look at while all bundled up in blankets!



Here's the first agapanthus flower of the year.



Lots more flowers still to come, probably some are out already. But we were too shattered to get back to the caravan this weekend. Maybe next weekend.

Long time absent

I'm still alive! Grin!

We've been doing a lot of stuff (including ordering a new Motability car yesterday) and I haven't had time and energy to update.

But I'm trying to keep photos uploaded in a relatively timely manner on my Flickr account.

Back yard from the bathroom window



The back yard is looking wonderful at the moment - the lilies and the wonderfully scented mock orange are in full flower. My only complaint is that it's been mostly too cold to sit out and enjoy.

Mock orange



Wish I had smell-o-vision for the mock orange photo!

John took this photo of our back yard earlier this evening.

International ME/CFS Awareness Day 2008

Blogging for ME/CFS Awareness 2008



Denise Vella


M.E Awareness 2008 in Malta

This year one of the youngest M.E sufferers and members of our email support group, Denise Vella, will be taking care of raising and creating awareness about M.E in Malta.

The last 3 years have been difficult for Denise because she did not accept her condition fully. As a result her relationships with friends and teachers were strained due to the fact that she did not explain what she was feeling and her friends thought they were being rude if they asked.

So as this year she is attending a new school (Sixth Form), she has decided to start afresh. On her first day at school she spoke out about her different needs, what she could manage to do and what she couldn't. She was surprised by the students' and teachers' response.

Taking heart, she decided to do the Systems of Knowledge* project (a very important academic project) about pushing for ME Awareness. This entails a lot of energy and work on her part as you can imagine. Financial support was difficult to find however a generous anonymous sponsor has answered Denise' plea and offered to help.

Mr Brian Grech, the photographer chosen for both the poster and the leaflet came up with the idea of using Denise for the poster. Her parents are presently distributing Awareness posters and leaflets in hospitals, clinics, schools and where ever will make a difference to our cause.

ME Sufferers Malta


* Systems of Knowledge is taken at post-secondary level of education (16-18 year-olds) and covers a wide area of Knowledge (interdisciplinary). It also includes a project - the topic of which must be dealt with in an analytic, descriptive and reflective manner. Unless students pass this exam/assessment at the end of sixth form, they will not be able to enter the University of Malta.

Many thanks to Rebecca of ME Sufferers Malta for this information about Systems of Knowledge in Malta.

Off to Cambridge

View from Spindrift Court, 27 April 2008

We intended to travel to London and stay with Sarah for the weekend, but John has had food poisoning the last few days. He has recovered enough for us to travel to Cambridge today, so that we can attend the MERUK New Horizons 2008 Conference tomorrow. I'm so looking forward to it, it's years since I went to a conference.

I spoke to Dr Neil Abbot early last week when I telephoned to pay for the conference. He told me that there are about 130 people booked, and that someone from the MRC is coming. Lets hope that they do actually turn up!

Better pop off now and finish packing!



View from Spindrift Court, 26 April 2008

PS part of my photos are cut off down the right side. If you want to see the whole picture, click on it and you will be taken to the Flickr Website where you can even bigify it it if you want.

Royal Society of Medicine CFS Conference, Monday 28 April

We're struggling on here in Liverpool at the moment, life enhanced by a visit from my favourite visitor again - it's always lovely to have Brodie cat staying with us.



Too much happening to catch up just now, but my friend Suzy has asked me to post this on my blog to help publicise the campaign to send postcards to the Royal Society of Medicine to protest about their conference on CFS that happens near the end of this month.


"On a Postcard, please" Campaign. Have you sent yours in, yet?

Suzy Chapman has asked me to remind you that there's still time to send a postcard to the Royal Society of Medicine in protest against their forthcoming "CFS" conference, on Monday 28 April, in London.

The conference claims to be taking a "a broad look at chronic fatigue syndrome" but Professors Simon Wessely and Peter D White were members of the RSM's Conference Planning Committee and the speakers are mostly drawn from psychiatric/psychological backgrounds.

The line-up includes Profs Simon Wessely (KCL), Peter White (BARTS, PACE), Matthew Hotopf, Rona Moss-Morris (CBT/GET), Chris Dowrick (FINE Trials) and Dr Anthony Cleare (IoP) and the session chairs include Professor Mansel Aylward (Unum Provident Centre for Disability) and Richard Baker (NICE).

Read what the national UK ME organisations are saying about this conference here

For the address to send your postcard and a copy of the Campaign Flyer go here.

For a copy of the RSM CFS Conference Programme go here.

It's not long, now. Please let the RSM know what you think!

Snow!

It's snowing quite hard. Quite a surprise after the sunshine for the Grand National at Aintree. It was forecast, but we mostly don't get snow here in Liverpool.

One of the horses I bet on came in second - beat one of John's bets at the end. So we think I'll be about even on my bets, and John won't have lost much. Sunshiney day and it's fun to watch the big race if you have a small bet on it. We had a bottle of champagne to toast our luck!

More news when more time!

My favourite visitor is back

My favourite visitor

Poor Brodie arrived back home about a week ago after being missing for a few hours, minus his collar, and with some scratches on his poor nose. The scratches look to be healing up nicely, so I've been giving him lots of pampering so he doesn't miss his slaves too much while they are away visiting Sarah in London.

My amaryllis is finally in bud - well, the bud has opened today but I haven't taken a photo yet. Maybe later today, though the light isn't very good at present. I'm not keen on using flash if I can avoid it - colours seem much truer with natural light.



Amaryllis in bud

Sunday excursion

Felt really rough on Saturday, so just vegged in bed all day. Sunday it was so gorgeous out that we both felt we had to get out of the house. So wonderful to see so much sunshine.



Liverpool really is a city of cranes at present. I find them interesting - the angles they make against the sky and other buildings. And I love their colour against blue skies! Especially the red ones!



Baltic Fleet and cranes

Went to Gordale Nurseries first, where I was tempted by several plants (especially some of the euphorbias, but I worry about their nasty sap) but decided that I didn't really have the energy to look after any new plants right now. It was good fun to have a look at what is available at this time of year though, and it's so great to even begin to think about gardening again.

John trundled me as far as the kids' playground, when we heard some strange bird calls. We headed off towards them and found these strange birds:



What on earth are they? John made a guess at quail, but I didn't think quail had bald heads!

On to the flat afterwards, brought some more stuff home. Cooking notes Mum made at night school in the 1939-40 session. First recipe is lentil soup, followed by kidney soup. Not had time to read further yet. John went for a walk round the marine lake while I went through more bits and pieces.

It was very still, though very cold despite the sunshine. We watched a couple of kayackers paddling round the lake. Rather them than me!!! And then we watched the sun sink over the hills of Wales. Here's the last glimmer before it disappeared:



Today I went for my regular Monday evening counselling session. Been going for a few weeks now, was lucky enough to be able to contact the Counsellor I saw when I was fairly newly disabled with ME. She helped me a lot back then, and now I am seeing her for bereavement counselling. Today we began work on my Life Line. This is going to be painful I think, but I am convinced it will all help in the long term.



Sunday Traffic jam outside St Luke's Church. We think there must have been something on at the new stadium. Obvously this is something we are going to have to take account of when planning on driving through Liverpool!

Pancakes

Sunday Sunset at West Kirby

We missed pancake day last week, so we had pancakes for breakfast this morning to make up for it. We both enjoyed them so much we are thinking we might make it a regular Tuesday morning breakfast.

Car Wash

Urm, meant to post more often - life just keeps happening. May get to update better soon, but in the meantime here's what we did on Sunday afternoon:



Been over to the flat in West Kirby both Saturday and Sunday and am knackered after all the car travel. We did manage to visit a couple of charity shops, John got a new to him shirt and some vinyl albums, I got two books, blue dragon china (that matches some bowls we already have), and a sparkly over blouse (can't resist a few sequins!).

But on the decluttering front we took a big black bin bag of stuff to Oxfam, and have started the next bag. And I am making plans for boxes at the top of the stairs to drop books in as I go through the book cases in our bedroom.

Sleep time now I think.

Day Trip to Abersoch

January has been quite a difficult month so far, but I think things are improving now.

Saturday morning we got a phone call from Harold, our landlord for the caravan pitch. He's found us a second hand caravan and wanted us to go and see it. Phone calls round all the family, and arranged to visit Sunday morning. Sunday morning Helen got here around 8am and we set off.

The new (to us) van is nice - much paler "wood" furniture than the old one, so seems much brighter inside. Nice big windows across the front, similar to how they were in the old van. (we had been put off many of the more modern vans by their small windows at the front)



One double, two twin bedrooms, the twin beds can be pushed together to make double beds. The cooker looks as if it's never been used, as does the gas fire.



The curtains and bedhead fabric in the bedrooms is not really what we'd have chosen, but we'll only be sleeping in there so that shouldn't be too much bother! The living room curtains are thankfully plain, a sort of burgundy colour. Upholstery in the living room is patterned and not really to our taste, but it's livable with.



It's double glazed and fully insulated (that'll be a big improvement on the old van!), but hasn't got central heating. Harold will arrange for the manufacturers to install that for us.



Only downside is that the loo, washbasin and shower are all in the same room. In the old van we had separate toilet with washbasin and shower room with another washbasin. But we'll fettle up the loo in the shed for emergency use, so we can live with that.

Harold gave us lunch, so we didn't get to the old van till about 2.30. Helen and John packed the kitchen stuff up and took it to Harold's shed in the next field for storage, and I packed up all the clothes and stripped the beds etc.

We left the caravan around 6pm. It was clear, and the sky was full of stars. Seemed strange to see the constellations so different to Summer nights! Cassiopea and Orion were clear, and Mars was bright above. Could make out 5 of the Pleiades (Seven Sisters). It's just fabulous to be somewhere where the night skies are dark. Can only see the occasional star from Liverpool - too much light pollution.

We still have more stuff to pack up and bring home, so John has taken a day of work on Friday, and we'll do another day trip. We can't stop over as it's the time when the caravan site is closed, and besides Sarah is coming up for the weekend and we want to see her.



Primroses growing in the bank by our caravan