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.

Sarah's garden

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!



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!



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.



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!



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!



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

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.



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).



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. :-)



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.

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.



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!



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



But it was Helen and David's day.



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!



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.



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



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.



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.



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!

Long time no see!

A lot of things have happened over the summer. Hopefully I can catch up at some time, but seems best to me just to jump straight back in.

Monday I gave the caravan living room a good clean, Dysoned the floor, tidied up all the papers and general odds and sods and put clothes away. Ended up so tired that I couldn't get outside with the tripod and camera to take photos of the (almost full) moon rising. Ah well, there will be other moonrises, hopefully.

Yesterday morning I re-arranged the computer and the table, so that the room is more of a living area and less of an office and general dumping ground. If I were in Liverpool I would have been at Chris's funeral. But I'm in Abersoch, so decided to at least join in spirit.

About 15 minutes before midday I lit four candles and some Barbados Dunes incense, and had a ciggie - Chris was a smoker, so I think he'd have liked that. I shut down the computer and switched everything off at the mains so that there was no distracting high pitched hum. Opened the door so I could hear the outside, the bird calls and wingbeats.

At midday I stood for 2 minutes in silence, and tried to send my thoughts and love to everyone at the funeral. Then I sat watching the birds feeding through the open door - great tit and sparrows. And the robin came down for some crumbs. After half an hour I broke silence with some music - Buena Vista Social Club. Somehow felt the right one to play of the four CDs I have here with me.

Around tea time I went round the back of the caravan to take the chain off the gas cylinders in case it should be raining when the gas man called. I stepped round the back of the shed to find that the last passion flower of the year had opened. Felt like a sign of hope to me. I watched the mist on the hills, then the summit of Snowden reared up, floating above the low hills on a billowing cloud layer.



Heavy rain drumming on the caravan roof overnight woke me several times. This morning began very still, damp underfoot, but a lovely dawn. I went out in the field in my nightie to take photos of it, despite the chill in the air it wasn't too uncomfortable as the wind was so light.



I'm the only resident in a field with 12 caravans, and there isn't anyone resident on the nearby site either... Mind you, it's a very fetching apple green vintage nightie with a print of bunches of red, pink and blue flowers, was tempted to wear it as a dress in the summer! So not ashamed to be seen in it.

I sat and watched the sea lighten to a milky white, with a single yacht motoring slowly across the bay. Behind Pwllheli the mist rolled down the valleys, the trees rising ghostly from the fields with the white fret around their feet. The cloud base finally rose enough that the summit of Snowdon showed, mist overspilling the valleys below, silhouetting the nearer hills.

Today is one of those days for just sitting and watching the changing cloudscape and the light on the sea. And (3.30pm) the rainbow and heavy squall drenching me when I leaped out the caravan to take photos!