Sulphasalazine

Well I have just taken my seventh pill. Tomorrow I start taking two a day, one morning, one at night. So far so good. No sign of the dreaded headaches yet, but the one makes me feel very sleepy about an hour after so goodness knows how I will get on with two and I have to get up to four at the end of the third week. First blood test next week to monitor my white cell count, and a liver function test two weeks after that.

I just hope it don't take the full six months to work as my hands are pretty seized up now, and that would mean another winter being absolutely useless for half of the day.

This week, mostly

I'm reading.....

Greek Walls, an odyssey in Corfu by John Waller. The story of one family's quest to build a house on Corfu thirty odd years ago before the advent of mass tourism. Lovely book about a lovely place.

I'm drinking.....

cloudy lemonade from Sainsburys. Not a patch on the Greek Epsa lemonade which would have been really welcome during the recent hot weather here. It tastes rather like the old fashioned homemade lemonade of my childhood. Wonderful. Just wish I could buy it over here.

I'm watching.....

the flowers on my evening primrose slowly climb up my clematis arbour. Already the one plant is seven feet tall. How much higher can it go I wonder??

The best loo in the Westcountry.

We went to Forde Abbey yesterday. The gardens are an absolute riot of colour just now, particularly the herbaceous borders and parts of the walled gardens.

I took this photo from the window of the Visitors Toilet. What an outlook!!

Windows and doors were something of a theme yesterday as the following ones show too.

Happy Birthday

My grey babies are four years old today. I intended to take a photo of them together to save and to post here. Unfortunately in the extreme heat today I have hardly seen them at all, much less together.

So here they are four years ago when they were about 5 weeks old.

Misty

Nelson

Happy Birthday to my terrible twins.

Random jottings after a visit to the dentist

We have Ribena fields round here, well not literally of course but blackcurrants which are reputed to go to make Ribena drinks. Since apparently 95% of all cultivated blackcurrants in this country go to Ribena, it’s certainly a strong possibility. They were harvesting yesterday and driving past the fields to go to the dentists, the smell was so strong you could eat it. Like a huge fruit pie drifting across the Somerset sky, the scent of hot fruit followed me for half a mile or so. I was positively salivating, not a response I normally expect as I headed to my appointment in the chair.

Arriving in the dentist’s waiting room finally, there was once chair left, three being taken up with the possessions of a lady in her seventies, who sat amongst the debris on the fourth like an elderly mermaid in a sea of packages. My chair, then, was opposite a large fish tank. A notice above informed of the existence of some large fish called Plecos within its' bubbling waters. The dentist appeared and summoned the lady into the surgery by her surname. “Oh such formality, I don’t usually get called Miss, Sarah please, on such a hot day”.

Another older lady appeared, puffing up the stairs, and sat in the ,now vacant, seat to the side of the tank. “I hates coming here; I do it twice a year though. Not usually this hot, Phew. These fish are supposed to be restful." She had the demeanour of a retired farmer and wore sensible shoes which she removed as she sat down. “’Tis bad on the feet this weather.”

We passed a few minutes chatting about the fish and jointly noticed a large orange coloured one chasing what looked like two Angel fish. “I really hates bullying; stop it, naughty thing”. The Plecos were huge compared to the other fish and sat like large blobs of spotty jelly at the back of the tank. "Growing well, isn't 'em?" We resumed reading our respective newspapers.

Five minutes later and in burst a third elderly lady carrying two large and heavy bags. A slight thing, she wore a large denim sunhat at a jaunty angle and a flowered suit. “Another victim” she proclaimed. “Still, nice to sit in the cool here I suppose”, she sighed and began to look around her.

“Oh no! I see they have brought those disgusting fish up here now. I managed to avoid them when they were downstairs. Oh, I can’t bear to look at them, they're so revolting.” The fish lovers continued with their newspapers and didn’t say a word.

After my unusually event-free appointment I was shown out by the new nurse, the previous one having left in search of promotion. “Goodbye, nice to see you,” rang the dentist’s voice behind me.

"What he really means is nice to see the back of me,” I countered to the nurse. “Oh I don’t think so”, she smiled a kindly smile. I told her that this chap had been tending to my teeth for the best part of 15 years, and it was always an uphill struggle mostly due to my Fibro and ME. I thought I was the Patient from Hell.

“Oh, no no no. He did say you were sort of interesting, but I assumed he meant your character not your teeth!”

Botheration

I did a whole beautiful post on here earlier. Blogger has somehow lost it. I will try again tomorrow!

A pause in the proceedings

whilst I recover from a horrid summer gastric flu. No doubt caught from one of the seething masses at this weekend's Mid Devon Show.

Misty and Nelson and WH have been ministering to me, although when I was "talking to the big white telephone" last night I could have done without a cat on my feet for company. Goggins and Napoleon have carried on as normal, even if I am refusing food they still want theirs!

The natives are restless

The feline members of the household just adore this hot weather. Nelson sunbathes to his heart's content and sleeps even longer during the day. Goggins hides until 5pm when he takes to the front doorstep and revels in the seering heat of the late afternoon sun, stretching out his legs and luxuriating in the warm rays; even his little pink stomach, visible under the sparse white fur, gets a toasting.

Misty is like a thing or rather a cat possessed. There are so many butterflies and bees in the garden, he has to chase them all, at once. He doesn't know where to turn first. He is totally ignoring Napoleon, the hanger on who persists in returnng night after night even though he is unceremoniously carted off to his real home round the corner, time after time, after time. Misty is on a mission, to rid his territory of anything that flies. He can't reach the birds and when he does get ominously close he is outwitted and his quarry takes to the air, much to his amazement. It's like watching the three card trick, it gets him every time. How do they do that? The little cat jumps and leaps but somehow he can't quite manage it. Unperturbed he takes after something else. Periodically he will return to the house and check developments there and may be have a bite or two of food. He uses so much energy he needs enough food to fed two of my other cats.

By night, Nelson joins Misty and along with Toby their litter mate from next door they prowl the streets for moths and other things which fly by night. Misty returns with each of his catches to remove the wings behind the front door. By midnight Nelson is exhausted again and comes for his nightly cuddle, but finding my bed too hot for sleep, he has taken to lying on the smooth wood of the top of the chest. Goggins too, remains on his now cool doorsetep and guards it until morning.

Only Misty remains awake, chasing and diving and rushing around until, exhausted, he drags his weak back leg up the stairs and has a quick fight with Nelson before sleep overcomes him. An hour or so later I am awakened as he has a sleepy tussle with a wayward moth which happened in through the open window. It is nearly dawn, time for him to start his patrol again. In an hour or so he is gone, a little bang of the cat-flap at Napoleon to show that he hasn't quite forgotten him, then a whole new day to investigate.

My MP doesn't want to know.

I practice what I preach, so when I asked people here to look on the Invest in ME website and write to their MP, I did just that and wrote to Angela Browning MP, member for Tiverton and Honiton.

After the first reply enclosing a less than helpful letter from a Minister at the Dept of Health I wrote again, pointing out that I had received no answers to my questions and asking Mrs Browning in any case if she would sign the Early Day Motion 260 which says:

That this House:

notes that 2005 is the 50th anniversary of the first description in medical literature of the illness myalgic encephalopathy (ME);

is concerned by the subsequent lack of scientific research into the illness during that time, which has been a cause of distress to the quarter million ME sufferers in the UK;

reminds the Government of the study, ME: Cost to the Nation, that put the annual economic cost of ME at £3.5 billion;

is dismayed to learn that one of the few contemporary scientific studies into the causes of this illness, carried out at Glasgow University, is under threat from lack of funds;

and calls on the Government to provide the necessary funds to secure and promote this and other studies into the cause and treatment of M.E.

Her reply astounded me:

"You may care to know that I do not sign EDMs because, despite the name "motion", they are rarely debated on the Floor of the House. More importantly Ministers are not even required to give a response. I therefore write to Ministers when constituents contact me about EDMs, so that the Minister is aware of the views being expressed and is required to give a reply."

Or in this case a non-reply. As a friend who is concerned with ME wrote to me:

The whole response seems to wreak of apathy - and still you didn't get a response to your earlier questions. Another person who cannot see, and isn't interested in the havoc this illness is causing.

Acupuncture on the NHS

I suppose I am lucky to be getting my second round of treatment in 18 months, however it can't be cost effective and it certainly isn't doing me the good it should be. The first 3 weeks of the cycle you get to go once a week. The effect seems to last about a week so the next treatment tops it up and the effect is maintained. After 3 weeks you leave it 2 weeks between treatments and for me the effect has worn off so the treatment is like the first time all over again. I tell the therapist this. She is concerned but can not do any more as this is all I am allowed. Now for the next couple of treatments I go every 4 weeks, again each time is like the first time again. Big effects, I feel quite ill for 48 hours then a lessening of symptoms for a few days then it's like the big switch off. Bang I'm back to square one. I stay there too.

Now my question is this, am I having the treatment to benefit me or to benefit the NHS?? Maybe I am just having it so that I can be a statistic of another person treated with a complementary therapy. Or rather, not treated in my case, as at the end of it all I have no sustained improvement. I was very sceptical initially but it must work as I get all these different effects. I just wish the system would allow me enough treatments to actually improve for good. That would be cost effective then as I would not need box loads of pain killers and other meds. Right now it costs for the treatment and it still costs for the pills.

This week, mostly.....

I'm reading.....

Poetry by John Clare from his Major Works. I was reminded of him recently and couldn't find my book with some of his poems in, so whilst in Exeter the other day I bought this new copy. I just love his countryside writing. Just right for this hot weather.

Rich music breathes in summers every sound

And in her harmony of varied greens

Woods meadows cornfields all around

Much beauty intervenes

Filling with harmony the ear and eye

While oer the mingling scenes

Far spreads the laughing sky

From Summer Images, John Clare

I'm listening.....

to the greenfinch which has declared himself 'top of the tree' and sits in the oak behind my house singing his heart out, morning, noon and night. Listen to his cousin here

I'm watching.....

the nightly Crazy Ballet with Misty, Nelson and their brother Toby chasing and trying to catch moths under the streetlight outside. They start with all good intentions but really it's just too hot so they collapse in the heat on the road and lie there just watching and dreaming until a sudden burst of energy starts them off again.

It's a very hot Monday

We have temperatures of 34 degrees C here, supposed to be going hotter mid week. It's just like being in Greece with one exception, these houses are just not made for heat at all. Actually two exceptions, I can't see the sea either. So here to remind myself are two pics from our last trip. Spot the hunk too.

Weekend away

Back from a hectic weekend!

First we went to the afore-mentioned Wedding in Cheltenham's posh Montpellier district. Then yesterday visited middle step-daughter in neigbouring Gloucester.

Today we're chilling out although that's hard in the heat!

Normal service will be back tomorrow.

In the nude in Xray

Not quite but it made a good title. Went for a couple of Xrays to do with the Lupus thing, Why?? I don't know. Anyway I got there, go straight in which was great, no hanging around for hours, get to the cubicle then am told "Oh just take all your stuff off and put your shirt back on, we've run out of gowns."

Well excuse me, but my shirt was on the skimpy side and I am no lightweight, so I did as I was told and hid in the cubicle until they looked for me.

The strange thing is that this happened last time I went to the same department for a scan. Obviously our local NHS can't afford gowns.

This week, mostly.....

I'm wearing.....

Thirties clothing. I will be going to my first God-daughter's wedding on Friday here. In honour of the occasion I'll be wearing a Thirties inspired outfit complete with feathers and high shoes. Totally unlike me.

I'm listening.....

to Radio Two as I clean up my neglected house and do all those chores that you just hate doing. In the 50's it was the Light Programme that played Music While You Work!

I'm watching.....

all those baby Swallows and House Martins trying out their wings for the first time in the skies above this village. Their chattering makes them sound so excited. The sound of summer for me.

Music to my ears

We were in Exeter yesterday and, popping into the Cathedral for a break, happened upon the Philharmonia Orchestra rehearsing for a concert. I had never heard a full scale orchestra in the flesh as it were and certainly not in a Cathedral. The sound was out of this world. Made me want to book up a concert straightaway. I will certainly be scouring the the ads for local concerts in future.

Because it is a beautiful evening

Summer Evening


The frog half fearful jumps across the path,
And little mouse that leaves its hole at eve
Nimbles with timid dread beneath the swath;
My rustling steps awhile their joys deceive,
Till past, and then the cricket sings more strong,
And grasshoppers in merry moods still wear
The short night weary with their fretting song.
Up from behind the molehill jumps the hare,
Cheat of his chosen bed, and from the bank
The yellowhammer flutters in short fears
From off its nest hid in the grasses rank,
And drops again when no more noise it hears.
Thus nature's human link and endless thrall,
Proud man, still seems the enemy of all.

John Clare

Outpatient appointment

The visit to the Rheumatologist did not go well yesterday. First I waited half an hour to see her, then I got moved to another waiting area, finally I saw her almost an hour late and she was in a hurry. She had clearly not received the urgent fax from my GPa as she said she hoped the plaquenil was making a difference. Things deteriorated from then onwards. I did get another big shot of cortisone until I can decide which new med I want to take, Sulphasalazine or Methotrexate.

Oh and by the way, I may have Lupus now so got to get some more bloods done, another chest xray and have some more (different) meds for the Raynauds. In ten minutes I was seen, injected, laden with drug pamphlets and test requests and bundled out of the door.

It was gone 5.30pm though.

In my garden this week

you get a picture of the whole garden!!

Also the promised picture of a flower from my Magnolia grandiflora, just visible in the main picture on the back left hand side. My thumb gives you an idea of the size of each flower. Enjoy.

This week, mostly.....

I'm reading.....

Eurydice Street by Sofka Zinovieff. Part autobiography, part travelogue this is the story of a family's move to Athens. The author was trained in anthropology and gives an insight into real Greek life and the difficult period as Athens was preparing for the Olympic Games. I'm only a couple of chapters in, but already I can identify with some of the characters and situations the family meets up with. Affectionate and engaging rather than outright humourous.

I'm watching.....

the flowers on my Magnolia grandiflora opening. Huge bowls of delicate white flowers surround a yellow centre and give off the most beautiful scent particularly in the evening. I'll post some pictures later hopefully.

I'm wearing.....

a fetching combination of blue Hanes cycling shorts purchased 10 years ago in New York along with a bright orange vest top. It's the only thing in this 90 degree heat. I just hope no one rings the doorbell. I would HATE to be seen in public like this!!

PS Hanes don't DO cycle shorts any more!!

Hi to all you literary types

Seeing as I seem to be getting some visitors from the links on Di's sites , I thought I'd better say Hi.

You won't find anything high-brow here just general madness and assorted ramblings. I do like reading and writing though, I just don't have any very literary aspirations. I always loved English at school (many, many moons ago) and my English teacher had a row with my Biology teacher as each wanted me to do 'their' subject at A level and further. In the end science won although I'm sure a good grounding in languages stands you in better stead for anything really.

Anyway I'll end this by saying a big thank you to Di for encouraging me to start this blog and for activating some of those grey cells occasionally.

OOH I'm famous

Well sort of.

Di has put my list of favourite books on her booklish page. Thanks Di.

Literary moi? Mais non, pas du tout.

He did it

Good news: Andy Murray beat Andy Roddick at Wimbledon; I'm still cheering.

Bad news: now he has to play my other (new) hero Marcus Bagdatis in the next round. Bagdatis survived yet another injury in the first set to beat Sebastian Grosjean. So that makes the list of ailments he has suffered so far this Wimbledon read: breathing dificulties, a stomach upset, a groin strain, a pulled knee ligament and backache in the first round and another bad back in the third round.

I'm holding my breath already!