Life insurance medical

I saw my GP yesterday for a medical for my life insurance. I thought it was just me and my poor medical history that required it but I was told that they do it all the time now.

Anyway interesting reading going through my medical notes for the last 20 years and before, and an invaluable exercise for my GP too, as I have only actually been seeing this one for 9 months.

Things I found out:

I have been complaining about my hands for over 10 years.

My then GP in 1997 queried RA but never did anything about it.

They had me down as depressed, but when the GP dug into it, it was just a comment after I had 2 bereavements in the same year, 11 years ago. The diagnosis was removed from my long list of current problems

Another GP had frequently put 'unexplained weight gain' and never followed it up.

That same GP had documented my aversion to Amytriptiline and my refusal to take it on the grounds of weight gain but never tied the two things up.

My heart problems started immediately after I had Parvo virus as did the RA but it was never 'joined up'. The GP put that right too yesterday and said in the report that I had had both things as direct result of the Parvo virus, it being a well documented progression in adults.

If all this had been sorted out at the time I probably wouldn't have remained with the ME diagnosis and other problems I had would have been investigated more.

The GP concluded the report by saying that as conventional treatments had failed to have much effect I was now seeing my Lyme specialist and getting much better on this regime, giving credibility to the 'probable Chronic Lyme' diagnosis.

Interesting isn't it? When someone actually bothers to review all your notes not just the current appointment stuff.

I thought that this government was all in favour of 'Joined-up Thinking', pity it doesn't extend to Ms Hewitt's departments. Or then again it's really no surprise is it?

It's a boy.

He finally arrived by c-section at 1pm on Friday, after 5 failed inductions and 4 days in hospital. Mum and babe doing well when we saw them yesterday. You forget how tiny these little ones are.

New house, new car, new baby?

We got the keys of the door on Monday. I bought a new (second hand) car on Wednesday. On Friday we are still awaiting the appearance of the 4th grandchild.

All week my stepdaughter has presented at her local maternity unit at 9am each morning to be induced. They have tried 5 times. Today she is 16 days overdue and is scheduled for a ceasarian this morning. To date they have had no beds. I hope to God they have one for her today.

She has gestational diabetes and group B strep. She was told she would not be allowed to go more than 7 days overdue as there was a risk she would have a very big baby. She was also told it would be 'out by Wednesday' - last Wednesday. She was told she would have a ceasarian last week. She was told she could not go more than 14 days overdue as it was dangerous. All conflicting and all disregarded as the time went on.

Now my anxious, depressed step-daughter, longing for her first baby, has been living on tenterhooks since last Thursday. Her partner has lost a week from work running backwards and forwards to the hospital each day.

Is this what the NHS calls primary care? Primary nightmare more like.

Read NHS Blog doctor on the subject of maternity care here

Key of the door

We finally got the key to the new place yesterday. Even that didn't go according to plan, we should have been all sorted by 12 noon but the solicitors for the vendors didn't let anyone know that they had received the money and that we could fetch the key so we were hanging round for 3 hours.

Then my car started making a very loud noise again and I decided not to drive it. So tomorrow we have to go and get another one, in a hurry, which is not always such a good idea. The current one had only just been serviced and had it's MOT, sailing through with flying colours. Now it needs 4 new tyres, the radiator has sprung a leak, an oil pump is leaking and the steering has gone. In 5 years I have never had any trouble with this car, now it has decided to repay me big-time. Even WH who likes to keep a car until months after anyone else would have given up said he's not spending all that money on it and it has to go.

Stressed right out

Haven't posted for over 2 weeks, a record of a sort for me. I wasn't even on holiday.

The last fortnight has been almost a nightmare, they say house moving is stressful, well my solicitor has been conveyancing for over 30 years and she has never had a conveyance like it. After numerous false starts, a withdrawal, a re-market, several rows with estate agents, a complaint to the Law Society and numerous other set backs, we *might* exchange contracts tomorrow. I feel like I have taken up residence in the solicitors office and have wasted so much other precious time in the process. 16 weeks since I first viewed and we're still messing about.

Keep your fingers crossed it goes through OK. We need it to. What the heck, keep everything crossed, please.

So nice to see you

I paid a visit to my Rheumatologist on Wednesday. This was a twelve week follow up from my last appointment in December, (no, I couldn't get the maths to add up either) postponed a further month by the hospital for one of 3 possible reasons, which one they did not specify.

First of all they have changed the waiting area, you check in one area and then are directed to sit in one of five jump seats along a narrow corridor facing a brick wall. This doubles as the chiropody area too so we were treated to a long monologue by an an elderly lady in a wheelchair parked at right angles so the corridor was not blocked. She talked of neighbours long dead,businesses lost and a full rundown of all her relatives faults. No actually she didn't talk she barked, droned and berated, monotonously for hours, or so it seemed. After a few minutes I approached by a nurse and told that I was 'next but one' but there would be a slight wait. The chap on the end groaned. He was the 'next'. He told me his appointment was some 75 minutes earlier. We sat and stewed on a boiling hot day in a corridor with no air. Eventually 'next' was called.

Two other couples then arrived all at once, names were taken and the nurse told me not long to go now, but it could have been worse, the previous two patients hadn't turned up. We all changed seats so the couples could sit together. the nurse came and suggested these late arrivals could go and sit in the coffee shop and she would fetch them. Luckily I had my bottle of water to sustain me. The elderly lady was taken to chiropody, the chap before me came out.

Some twenty minutes later another nurse asked if I had been forgotten. She disappeared, then came back and said "Doctor is reviewing your notes, you''ll be in soon. " Another ten minutes passed. Finally, one hour and forty minutes after my allotted time I was called in.

The consultant beamed, "I haven't seen you for a while have I?"

Er No. I had a locum last time and and the time before that and the last one was horrid. She mentioned his notes. I told her I did not like him. "He's from New Zealand," was the reply, "but he did put you on Methotrexate ." (Only after I had had specifically asked for another treatment when he had tried to end the consultation).

We discussed my diagnosis of Chronic Lyme. "How are you now? " I told her I was better than I had been for 10 years, was responding to the treatment, had good blood test results, all my 'lumps' had disappeared from the palms of my hands and other than the fact my hands are still curling up at night, I was heaps better. I asked whether or not I should see someone for the tendons in my hands which have been noticed by everyone I have seen for the last few years. They are thickened, painful and very stiff in the mornings causing this propensity for my hands to curl up.

"Can you make a fist?"

"Well yes, that's the problem, too much fist", she pushed my wrists up and down and cast a cursory glance at the back and front of my hands.

"OK then, you don't need to see anyone, you can move your fingers." Eh???

I demonstrated my ability to bend over, stretch up, put my arms above my head and behind my back.

"I am concerned that this private doctor is charging you too much. How much do you pay?" I named a figure I knew was about one quarter of her consultation fee as WH has seen her privately in the past. "Oh that's not too bad then." Not too bad, it more like a brilliant bargain. This chap is obviously not in it for the money. "What about the private prescriptions?" I didn't tell her I had stockpiled from the NHS prescriptions and would only need a few. I again named a ridiculously low figure. " You're quite happy then?"

Almost deliriously so I told her. I had found a doctor who believed me, a treatment that works and after 15 years I am improving ,albeit slowly and probably not completely. I am doing more, I had spent the previous morning gardening, I could go out more and what is more I have the stamina not to crash completely afterwards.

"Well we will have to agree to differ then. Your treatment is unusual and not at all main stream. It is very controversial; there are a lot of opponents both here and in the USA" The words left unsaid told me that she was one of them. I already knew that.

"I don't think there is any need to see me again until you want further hep from me. So nice to see you again."

The consultation was over. Why on earth did I bother going?

I don't want to go to Chelsea

That used to be one of my favourite songs, by Elvis Costello for those too young to remember.

This weekend however, I am going to Chelsea Flower Show and yes I really, really want to go. WH's business very very ocasionally has it's good side. This is one of them. One of his suppliers is sponsoring a show garden and we got tickets to go on not one but two whole days.

It's a bit of a marathon from here so we're staying up in town, not often I can write that I tell you, not least because the price of the hotel is only twice what the parking would cost! I'm planning a lovely weekend of gardening, bit of sightseeing and maybe some shopping too. Oh and WH gets to come along with his credit card too.

Just hope that daughter No 2, who is days away from giving birth, doesn't choose this weekend to get going. After I've been to the show she is allowed, but fingers crossed, not before, please.

Moving like a tortoise

Our house move has now been on the cards for 12 weeks. We are still no nearer to completion of our purchase. We finally received a draft contract this week as the vendors solicitors, two rival firms, have now stopped squabbling amongst themselves (and all over £20 too, it's disgraceful) only to discover yesterday that some probate certificates were missing and which the vendors solicitors had neglected to notice. Thank goodness our lady is on the ball.

So it's all back to the drawing board again. We can't now even get the key until we have been on holiday so it means that any work we need to do wil be after that. We want to extend the kitchen and at this rate we will not get planning consent until at least October which means we will have missed the whole of the summer, the light nights and good weather. We are now talking of having it ready for Christmas. Big deal. I was looking forward to spending the summer in the beautiful, south-facing garden and eating-out on the permanently warm sun terrace. I was looking forward to the extra space and the quiet away from barking dogs and noisy neighbours.

The original plan was to have moved in 2 weeks ago and the vendor was at great pains to ensure that we completed within 6 weeks. Shame that all the delay has been caused by his team. Of course he will get his money in due course, as for us, we are left with the feeling that we have wasted the whole of this year.

Lyme disease week 15

I've been on high level antibiotics (Doxycycline) now for 15 weeks. I'm doing OK, my activity level is 50% of what it was when I was well, ie 15 years ago. It is about 500% higher than when I was at my worst last autumn. I've had a few problems with the dreaded fungal attack but with a judicious dose of Diflucan once a week and by taking high dose probiotics I now have it all under control. The worst aspect is my high susceptibility to sunburn which is a small price to pay for such a brilliant recovery. This week it's no bother at all, having had wall to wall rain for the last 10 days (ever since my visitors arrived!)

I see Dr Thomas Stuttaford in The Times yesterday was writing about the perils of Lyme which seems to have become headline news over the last few weeks. One of the points he makes is this: if left untreated, about 60 per cent of patients who have had Lyme disease develop severe arthritis. Well stone the crows, my Rheumatoid Arthritis isn't rheumatoid after all. Actually we had already decided that. Despite the fact I am taking absolutely no medication whatsoever for Arthritis, it is going, I can move, the swelling is going and best of all the hard lumps which I had on the palms of my hands and the soles of my feet have gone. Completely. Bloods taken last week revealed, as the nurse reading them out to me said " better results than you have had for about 20 years". Markers for infection and arthritis were almost normal.

Now for the sting in the tail. A consultation with my GP last week made clear that although I was recovering better than anyone had hoped, the practice partners had had a meeting and confirmed their earlier decision not to prescribe any more of the antibiotics as they are "off licence". I must get them via a private prescription from my private consultant, for which of course, I must pay.

OK, I have posted on this topic before, but that was before I had definite proof that the treatment is really working.

You know what, NICE sucks and so does the NHS. I have been unable to work for 15 years, I finally have a treatment that is working but hey, as if I am not disadvantaged enough already, I have to pay for it myself. No matter that 2 years of NHS time and money was wasted trying to find an arthritis medication to which I was not allergic and pain relief for a condition I didn't have.

Old Southern Bluegrass Riverside Bogswamp Family Band

get a load of this.

My nephew is the lead guitarist and writer of the piece. I am so proud. A real musician in the family.

All change on the western front

I know what the seaside landladies call change over day now.

Today I have some very old family friends arriving for the rest of the week. Their 22nd year here and probably the last time in this house before we move. This morning I was up with the lark changing rooms round, making beds and shooing the cats off clean linen.

The weather does not look promising but I'm sure we'll find plenty to do, we always do. Tonight I'm cooking a Greek meal so I hope that will inject some sun at any rate.

Watch this space for news of what we get up to.

Not much to say

...other than it has been an extremely busy week so far:

The Painter is in residence sorting out the bathroom
I have spent HOURS on the phone to solicitors, estate agents and the like.
Mr Hippy Chic has been to visit and to collect his post.
WH's No 1 Assistant is coming back from India and bringing his wife to visit too. Yay!
I dug up a huge bush in the back garden.
I'm sunburnt badly from the effects of gardening, so....
I am now sporting a big hat, cotton gloves and fetching zinc white sunblock.
The holiday confirmation arrived.
I have been packing for the move.

I am still feeling so much better. ......

In my garden this week

One of the biggest clumps making an impact is Euphorbia characias ssp wulfeni which looks stately and imposing when viewed from the patio. This particular bush wasn't planted by me in this place, I had an older bush probably 10 years ago which succumbed to the inevitable winter wet and was no more. Suddenly last year up came a seedling in an entirely different place and it grew to it's full 3 feet in less than 12 months. I see now that there is yet another seedling close by. One for the transplant list, to be taken to the new abode later in the summer.

My other bloom this week is the perennially lovely Granny Bonnet or Columbine, properly known as Aquilegia vulgaris, the European Columbine.

My strains mostly came from seed obtained from Joan Loraines's garden, Greencombe at Porlock a good few years ago. the really blue blues seem to having all disappeared due to their promiscuous nature. They most likely interbred with some of the others I had too, so now all I have left is a mish-mash of hybrids. They're early this year too and somehow better because they stand out more because of it.

Hopefully this will be the first of a weekly(ish) series through the summer, like last year. As the house we are moving too has it's own lovely garden they'll be some reports from there later on. I just wish I could show you the beautiful Wisteria sinesis which is already adorning the pergola.

Rocking with the Hayseeds

This time last week I was off to see my fave band Hayseed Dixie at Exeter University. Once again they kept the audience bopping away for a full two hour set, full of gems like their take on Walk this Way, Holiday and Dirty Deeds. I prefer their original material and their best on the night (and on their new album) has got to be She Was Skinny When I Met Her although John Wheeler aka Barley Scotch dug himself into rather a deep hole in the intro given the age and stature of some of the audience (myself included).

I have now found that I can re-live some of their concert material for free on a brilliant site of their archive material and YES! it's free in line with their philosophy of giving good value for money and playing for expenses only. Have a good laugh at gems like Kirby Hill and listen to the speed and skill of Don Wayne Reno's banjo playing and Dale Reno on the mandolin. Barley Scotch isn't bad on the fiddle either.

If you like rock and you like something different you'll love this.

Dr Wonderful

I saw my Lyme doctor yesterday. He is very pleased with my progress and more to the point so am I and so is WH. Daily I can feel the layers peeling away and I am becoming almost human again. Eleven weeks of the antibiotic therapy is beggining to give some lasting benefit. I'm trying for another 12 weeks by which time I should be part way there.

Two things conspire to scupper my progress, the first is inbuilt, I am reacting to the sun big-time. I have to keep out of it and, for a died in the wool sunworshipper and lover of the great outdoors, this is hard. I wear factor 50 all the time but even so, a short drive to our nearest shops (6 miles) gave me a substantial burn on my right hand. Dr Wonderful suggests that on my forthcoming trip to Greece I stop the meds a few days before-hand to get the drug out of my system and don't take it for the duration of the trip. If this works I will be really over the moon.

The second blur on the horizon is the very real possibilty that my GP practice will not now prescribe me any more antibiotics beacuse they are 'off licence' in this treatment. It won't stop me taking them, however, as I shall obtain a private presciption and get the drugs elsewhere. It does beg the question though, which I have posed here before, would the NHS prefer for me to remain ill rather than stump up the cost of the drugs which are making a real improvement to my health for the first time in 15 years?

All gone south

Thanks to NHS blogdoctor my hits were at an all time high yesterday and the pattern looks like being repeated today. Hello to all of you medics out there, hope you learn something about how not to treat your patients when you read my experiences!

I think however my blog template now has a neurological illness in common with it's owner. For some reason all my side-bar stuff all went south during the day and best of all I didn't even touch it.

I examined all my code and it looks like it should do. I hope this is just one of those routine blogger blips and it will all slide back to it's rightful place.

Somehow I am not convinced. Watch this space.

Aren't our service industries wonderful?

I had a summons yesterday morning because BT said I had not paid mother's last phone bill.

The bill was dated 4th April, I paid it on 10th April and the summons was dated 16th April. I was so mad and I getting very angry on the phone and I KNOW it wasn't that girl's fault so I just had to put the phone down.

When Mother died I called up and told them. I was told that I would have to transfer it into my name if I wanted to keep the line temporarily, which I did. I didn't get a bill at all, so on 4th April I phoned them and they said one had been issued but I had obviously not received it. It must have been lost in the post. I decided there and then to have it cut off as we were not doing all the trips up there that we anticipated and anyway we had now sold the flat. The girl said she would reissue the old bill then cut off the phone then a new bill would come which would be less than the first so not to pay that, just pay the final one which I did and of course she was right because it was £26 less than the first bill.

Then I get this summons for non-payment of £32. I went ballistic. WH handed me the phone and found my cheque book whilst I was dialling the accounts department. First off they said "Oh it's a new account and because you didn't pay your first bill they summons you immediately. "

What within 12 days? (or actually 6 working days)

When I said about it having been mother's phone I was then told "Oh you shouldn't have changed the name on the account because if it's a deceased account they give you 3 months to pay."

Hey? I did that because BT told me to.

Then they said "Yes but it doesn't alter the fact you had not paid the first bill on the account," so I reminded the BT person that I called up in the first place because I didn't get one.

"Oh well that's due to the Post Office, not BT. You will have to complain to them"

Looking on my calendar there were 6 working days between the date of the final bill and the date of the summons, Easter was in the centre which reduced tham a bit. The bill arrived on Fri 6th because they only send them out second class and I paid on Tues 10th in my bank, the very next working day. Can't see how I could have done it any quicker. That apparently was not acceptable. Yet when I eventually move house I have to give them at least 5 working days to move my phone line.

It then took a further week or 5 working days to go through BT's computer system and did not show up as a payment until 17th the day after the summons. Interesting the summons itself took 4 days to reach me, second class post of course. If BT are so hung up on short time scale maybe they should use a faster delivery service themselves.

I then pointed out that my other (home) BT account is paid by standing order and is £80+ in credit as their monthly payment scheme does not allow me to make a smaller payment and I only actually pay for the line rental and get cheaper calls elsewhere. I was told "Oh we don't check your other accounts even if they are the same address."

So actually BT still owe me money, and I am wondering what on earth this country is coming to and how many other people have fallen foul of ridiculous situations like this.

First the NHS is taking it's last dying gasps now our (once) national telephone service has gone the same way.

Compare and Contrast

I know I know, no post for a week then two on the same day but I am celebrating.

Just compare this post written last November and my other post today. What is the difference?

I'll tell you what.

I have a diagnosis after 15 years. I am not a basket case, I have a bacterial infection. That infection is the causative agent of Lyme disease. Most importantly I am having treatment. After 11 weeks treatment I feel wonderful, I can function more than I have been able for about 10 years. Yes I know I have wasted 15 whole years of my entire life, a whopping 29% of it. But now I have hope, recovery and and best of all some normal life.

The disturbing thing is that none of this improvement is down to our wonderful NHS. I found the cause myself (after I recognised a picture of the Lyme rash as one which I had had). I was advised by the Eurolyme website and I found a private doctor who had the training and the skill and most importantly the interest to want to treat me. In 15 years all the NHS wanted to do was either ignore me, send me to a psychiatrist or give me unproved, dangerous, half-baked quack remedies. No-one wanted to treat me as a whole person with one illness.

Even now I have a treatment I will have to pay for it myself shortly via private prescriptions. My GP practice said that they will no longer be able to provide prescriptions for such a 'controversial' treatment as it is 'off-guideline' and unproven. OK , so they would rather I stay ill then? Even though my private doctor is in full contact with my NHS ones the NHS ones choose to disregard his expertise and go their own way. Even my NHS arthritis consultant has written to my GP (after being informed, out of courtesy, that my medications had changed and that I had a new diagnosis) and stated that I should stop this new treatment immediately. Why? because I am getting better?

I am now in total dispair at the state of the NHS. It seems the powers that be would rather follow regulations than provide what actually works and they also seem to want to keep people sick for long periods rather than in the first instance test them for their condition and secondly treat them when they do get the results.

I find I am in increasing agreement with John Crippen, the NHS Blogdoctor. I was never politically minded as a youngster, I was always too busy on other things. This life of mine has taught me otherwise, after all, I have had 15 years to think about it.

The whole situation in this country with regards to ME and Lyme disease is a shambles. It appears that there are dark forces at work keeping patients with these illnesses in thrall to the pyschiatrists. Far be it from me to speculate further here, but a quick of review of some of my sidelinks will give you food for thought enough to keep you reading for a twelve-month.

Just ponder this, how much money would have been saved if I had not been on benefits for 15 years and instead had a full range of tests and consulations followed by a course of treatment for up to 2 years. Now of course my condition is chronic, harder to treat, has given me other associated disorders and I might not recover completely.

Now multiply that figure by the estimated 240,000 ME suffers in this country, let alone those with undisclosed Lyme. You can draw your own conclusions.

What I've been doing this last week

A whole week's gone by and it has flown. I'm knackered. Anyway here's a brief resume of my activities:

1. Dug a whole huge patch of my back garden and removed oodles of Three Cornered Leek which had taken over. It was only AFTER I planted it I read a quote from Alan Titchmarsh which said it was a 'pernicious weed' and never to plant it in a small garden.

2. I have redone the stone border around 90% of my back garden. It's so unusual to be able to garden so early in the year, the weather was fabulous last week and the ground so dry it was almost a pleasure.

3. Spent 3 hours shopping at Cribbs Causeway on Sunday, bought a few gems and joy of joys Anne Harvey has reopened her shop so that was cause for more expense. ( Yes I know it's part of Alexon and NOT an exclusive designer shop but I like their stuff and it FITS)

4. Got sunburned, in April!

5. Emptied the whole of Mother's flat, disposed of the rubbish and cleaned it all out. That feels so good.

6. Saw middle step- daughter and bump last night, not long to go now. She was working, so we just called in briefly on our way past.

7. I have been playing Hayseed Dixie's fab new album. As usual I prefer the original material but they just bring a smile to my face and a bop to my step.

8. Reorganised my entire garage contents ahead of our imminent move; if we're keeping it, it's in a plastic storage box, colour coded and labelled in order of importance. Following this activity I had a trip to our local tip with a whole car load. Spring is for cleaning. Right?

Do you notice anything different reading all this??

I am feeling a lot better and I have the energy (and a little weight loss) to prove it. A trip to Dr Wonderful on Monday will hopefully confirm we are on the right track. It has only taken 15 years.

Spring

Reminds me of a silly poem my Dad taught me as a child:

The Spring is sprung
The Grass is riz
I wonder where the birdies is?

The bird is on the wing
Don't be absurd
The wings is on the bird.

(Attributed to Spike Milligan)

Singing in the trees at the bottom of my garden, that's where they all are!

It's warm, it's sunny and the birds are singing, what more could you want? I love this time of year.

Kalo Pascha (Happy Easter)

It's the biggest travel weekend of the year and our baby is off to New York today for the start of a trip round the US for three months. She's coming round to say good bye any minute. WH is feeling very apprehensive, he's going to be on tenterhooks for the next three months.

Later we are taking her car up to No 2 daughter to use until her baby is born in early June. The rest of the weekend we'll be spending with the other tribe; with a birthday to celebrate, Easter Egg hunts to go to and a whole long weekend of good weather to fill we'll probably be exhausted by Tuesday.

Seeing as the weather yesterday with a brilliant blue sky, reminded us of our beloved Greece, I'll wish you Happy Easter in Greek.

My Visual DNA

Read my VisualDNA™ Get your own VisualDNA™

Cool or what? Found this and I just HAD to do one. I love it.

Time flies

Well it's the last day of March already and I realise I haven't posted about a single book this year yet. Shame on me. I haven't given up reading at all, in fact I've probably read more than I usually do but I just don't seem to have had time to write about them.

So here then is my potted list of a few I have read so far this year, in no particular order, just as I remember them:

A Redbird Christmas: Fanny Flagg

Gods in Alabama: Joshilyn Jackson
Little Altars Everywhere: Rebecca Wells
Narrow Dog to Carcassonne: Terry Darlington
Eleni: Nicholas Gage
North of Ithaka: Eleni Gage
Good in Bed: Jennifer Weiner
Amazing Disgrace: James Hamilton Patterson
The Betrayal of Grace Mulcahy: Collette Caddle
Past Secrets: Cathy Kelly
The Secret Life of Bees: Sue Monk Kidd

Kitchen Confidential; Anthony Bourdain
The Curious incident of the Dog in the Night-time: Mark Haddon
Left Bank: Kate Muir

ME Bloggers

Seeing as I am getting LOTS of traffic from the Invest in ME blog link I'd like to point you all in the direction of some other bloggers with ME.

First and foremost my good friend Di who got me into this in the first place. whatdoyoudo is a blog right at the cutting edge and Di's getting her name up there in lights, writing for the Guardian amongst her other many commissions.

Look on my side bar and you'll see a link to Foggy Bloggers a webring with a host of interesting sites.

Seats for Landing, Rosevibe and velo-gubbed-legs are some places I go sometimes along with Help with ME. The Help with ME message board is just full of friendly people.

Hope this has given you some places to investigate. Have fun reading.

I've been Invested

Reading the latest Invest in ME newsletter earlier today I was interested to see that that they now have a link to blogs written by people who have ME. I therefore clicked the link to see who was there. Imagine my surprise when I found that I was one of them!

So Hello to anyone who came from that direction and Hello too to anyone who came via the NHS Blog Doctor which seems to have sent a few people in this direction over the weekend, notably because I have been there banging on about Lyme.

Lobbying for Lyme Disease

No less a writer than NHS Blog Doctor today tackles the subject of Lyme disease. In the past he has said things I don't agree with, notably about ME, but 99% of the time he is telling it how it is in the NHS today. If he is now wondering about Lyme then maybe the rest of the medical profession are beggining to wonder too. He is quoted and read widely.

Let's hope some of his more influential readers take notice.

The past is now firmly in the past

Today marked the end of another particularly harrowing part of WH's and my life and a part which I have never mentioned on here.

Twelve months ago whilst working locally WH's labourer was arrested by armed police and carted off to the local nick for questioning. WH was asked to accompany them. It turned out that this chap was being accused of committing a murder whilst they had been working in another part of the country three weeks previously, at a time when WH had been elsewhere pricing another job.

And there WH's nightmare began. After 3 days in the nick 'helping with enquiries' being let out only to sleep he then became a witness for the prosecution. His van was confiscated along with all his tools so he couldn't work for over a week until they returned them. He also had no builder's mate so had to work alone for a while until he found someone else. Meanwhile I was given the task of sifting through numerous receipts and other paperwork and helping to build a profile of where they had been in connection with work for the best part of 3 months, who they met, where they ate and where they slept, where they bought materials and which shops they had visited. During one of my many calls to WH asking yet another question 'you remember that timber....? I discovered that WH had fallen off a beam in a stone barn. A trip to hospital later, a serious injury to his back, sides and shoulder was revealed. He lost a further couple of weeks off work. He had nightmares and flash backs, he couldn't work out what on earth had happened and how he could have prevented it. "If I wasn't working there, he wouldn't have been there etc etc"

In January WH had to attend a trial, miles away, stay over night and wait all day until 3pm to give evidence. I couldn't go to support him as my Mother had died 2 days previously. The following week there was a verdict, guilty of murder and guilty of rape then an adjournment for sentence.

Today WH had the last bit of news by mail, his former worker has started a double life sentence. We hope we can put it behind us and for WH it means twelve months of waiting and wondering is over. We will never know exactly what happened that day or what caused him to do it in the first place. Frightening to think they had more or less lived along side each other and WH had no inkling at all.

I hope we can now move on.

Half-way through

my first 3 months of antibiotic treatment and I'm still not used to it. It does seem to be working though. Many of the neuro symptoms are slowing down although the RA is worse than ever. Not that the arctic weather we are having right now helps. I have a frozen shoulder and trapped nerves in my left arm.

This morning I forgot the capsules and took them after my breakfast and now I'm paying for it. Unfortunately the only real remedy is to eat. They are very caustic and make you feel nauseous without even trying.

Overal the improvement is noticeable if I disregard the RA, I'm getting strange rashes too which is a good indication the little spiros are being ousted.

All I can say just now is roll on the warmer weather and I'm going to feel Fab!!

We're Moving

Two little words that mean so much to me.

This year really is the start of the rest of my life. After 22 years in this house I'm moving to pastures new round the corner and WOWEE I'm buying it with WH; after 16 years of his and hers from here on in it will be 'ours'.

So bye bye to noisy neighbours and parking problems and barking dogs and all sorts of other annoyances. We will only have one set of neighbours and we know them. Stands a chance of being much more peaceful.

The countdown has begun, tomorrow I buy my wall planner and 'The project' begins in earnest.

If it all does go pear-shaped we will still have his and hers to retreat back too. Neat huh???

Shaggy Blog Stories

This is a brilliant idea for Red Nose Day which is on Friday this week, March 16th. Mike Troubled-Diva is compiling an anthology of the funniest posts from blogs written by UK bloggers. He hopes to put together a book in seven days which will then be published and sold by Lulu in honour of Comic Relief , all proceeds will then go to charity.

It's a great idea and such a good cause too, so all you visiting peeps get over there quick. Even if you can't submit a post of your own you can go there next week and buy the finished article. It's sure to be a hilarious read.

The merry-go-round

My life is like a merry-go-round right now. I need to stop it and get off but I can't seem to move. Events seem to have a life of their own and I just follow along.

1. It looks like I will be moving house this year. Fed up with noisy neighbours and the barking of 4 dogs in very close proximity, my patience finally snapped. I was rewarded by finding an eminently suitable house which WH and I could just about afford. We are still awaiting confirmation that it will be ours, but even if this one falls through then the decision has been made and we will move on to another one.

2. Having sold my mother's flat in 2 days, her estate is all but wound up. Just a million bits of paper to file and a few bills to pay. Must be a record for something legal in this country.

3. WH has a new labourer who lives a way away. I now find myself in the position of feeding the hired help every day for 2 weeks whilst they work locally.

4. My garage wall is subsiding rapidly. It has to be completely taken down and rebuilt. Fortunately we have some reliable favours to call in. It will, however, depend on me providing bacon sandwiches on tap for 2 days, but hey, it's not like I have anything else to do.

5. Goggins has gone senile and won't be on his own any more so wakes me at all hours, day and night, and demands a cuddle, food or preferably me to find WH immediately as he prefers to sleep on top of him. Not so easy last week when they were working 150 miles away.

6. Misty has learned to tap. Not just anything but me. He wants me, he taps my arm; he wants food in the night, he taps my face; he wants me to get off the phone, he taps my leg. It's a funny little tap, an outstretched right paw, claws well hidden and he just gives the tiniest of movements; it's like a feather tapped you as it floated past, barely perceivable but still there all the same. Still pretty annoying when you're doing something, like trying to sleep

maybe.

But my Lyme treatment is going well, a couple of Herxes and some strange effects but I am starting to feel some small improvements. I am very optimistic. In fact I think I deserve an extra holiday. I'm looking at Easter right now!

Just for the birds

Well I don't often refer to other people's blogs unless they're by people I know and love, yes that's you Di, but this one, Pewit hits the spot on a number of counts.

Firstly the page I hit on originally has my favourite ever birds, little pinky, long tailed tits, with their adorable little faces and fluffy white bibs. I just had to look further. Well this guy is a an expert par excellence, not just with the photography but his knowledge is outstanding. He also has a sense of humour too, if you read some of his comments and the jokey little names he calls things, you soon get the picture.

I spent over an hour last night just mesmerised by the sheer beauty of the birds and the photos themselves. And by the, way he does photo other things as well occasionally!

What I want to know is why WH can't take pics like that? after all, reading some of the technical blurb, we have a similar camera and the exact same lens.

Practice and talent and most of all time, thats why. Don't think WH and I are even on the same planet as Pewit, but we do know a master when we see one.

Go there now and prepare to get lost in time and birds. I can promise you it's well worth it.

Hanging in there / Foggy Blogging

Not much to report right now except to say that the treatment might be starting to work.

There is so much going on right now with emptying my Mother's flat and sorting that all out I just haven't time to stop here much.

Normal service will be resumed as soon as possible. Promise.

Meanwhile I joined the Foggy Bloggers webring. Go there and read, you might something inspiring. I did.

Click that link in my sidebar NOW!!

Kali spera Kalamos

At last, some good news, we're off to Kalamos again in late June. I know, I know it's so long to wait but what with new babies, collecting wayward daughters from airports and other committments, this is the first date we could reliably book.

I tried to find somewhere else, honest, but all the quiet places were booked up by now and really we wanted somewhere just peaceful and where I could easily chill out if my treatment is still being difficult. So this was the best option. Third year running too.

Problem is now, I just can't wait to get there and see if the swimming steps are still there, taste the mulberries on our own terrace and best of all renew our aquaintance with the little kingfisher who used 'our tree' for his fishing post every morning.

Argalasti Market, here we come.

Same old, same old

I'm 3 weeks into the antibiotic treatment and in the biggest herx of my life. It must surely have some significance. My Western Blots came back negative which I was told to expect given the length of time I've had this bug, but actually there were some positives hidden amongst the negatives in there, evidence of some infection somewhere.

And so I plod on. I'm sleeping about 16 hours a day and have no energy when I am awake. The joint pain, the sweats, the chills, the stiff neck, the headaches. the red rash, the stiffness, the muscle fatigue, the blurred vision, the fog, they're all there.

This time, however, it's different. I can see a light at the end of the tunnel. At the moment it's just a pinprick but it's there and I can see it. The symptoms may be the same, magnified, but now they have a purpose. I hope they're going to make me well. Even 25% would be a big improvement.

Meanwhile I resign myself to more of the same. For the time being anyway.

If I'm not here much, you know why.

A whole year later

or Happy Anniversary Blog. Can't believe it's a whole year since I started this.

There have been a lot of changes, not just with the blog but with my life too. The Chatboard soon went by the wayside, it was usually just me, Lynda and Terry and eventually just me!! The Food Blog went because I was so tied up with Mother I didn't have time to write any more and guess what? No-one noticed! I stopped writing my book for the same reasons, no time and I was brain dead when I did have time.

My life has changed big time too, most recently Mother died so no longer do have I have to drag myself to the Midlands every month then spend 2 weeks recovering. We lost my lovely Malmesley and WH's Lucky and D P's Jossy and Sparky so the cat numbers round here are much reduced. I'm now using a walking stick and a wheel chair, did not predict that one, and I also put back most of the weight I had fought to lose 2 years ago and all really as a result of meds and more meds and even less being able to move. I walked 200 yards yesterday and it felt like I would die.

I got diagnosed with Lyme Disease too, although the jury is still out on the blood results, but the clinical signs are all present and correct. I'm taking massive amounts of antibiotics to stop the little bugs and those are making me really sick. The RA is still there as well, just to put the icing on the cake, and the Raynauds for decoration.

But good things have happened too. I met some of my Bestest-ever Friends on the net in real life and have plans to meet some more. My one stepdaughter had a beautiful wedding, another is expecting her first child and the third is soon going on a trip round the USA. They grow up too quickly. The Grand-children too never cease to amaze us, the Shed-head will be 6 next week, the Princess was 3 last week and Book-worm will be 9 in the summer. Where did all that time go? Reading about 50 books, some I put on here, a lot I didn't.

The Gibson report was published and has given some hope to a lot of ME sufferers and there is currently an e-petition to the Prime Minister to help get our cause recognised. We still need to get a lot more people on our case. Greg and Linda are trying but it is so, so hard when no-one is listening.

So what do I have to look forward to? Well as per usual we are thinking of Greece, hot sun and warm nights by the sea. I hope the Lyme treatment is going to start working any day now and then I can get fit again. I finally gave in and applied for a Disability Allowance after 15 years of being sick and unable to work and 11 weeks later I still have no answer so maybe I'll hear something soon. We'll have a new Grandchild to get to know in June and a new Mum and Dad to support, can't wait for that.

So at the end of all these reflections I just have to thank the one person who inspired me in the first place and keeps me going when it gets tough and that's Di, Queen of the Trashionistas and writer extraordinaire. You don't know what you started!

Just a quickie

to say I'm still here but have been snowed under with paperwork, laid low with the new drugs and getting loads of 'stuff' sorted but hopefully I'm begining to see the wood for the trees. And yes, I'm seizing up again as I'm off the methotrexate whilst I take the Lyme drugs.

So it's going to be a long slow process but worth it I hope.

Meanwhile have you signed the e-petition yet??? If not, why not? Non Brits you have an excuse, the rest of you don't. Go there now, PLEASE.

See you later.

This is just the start

Last Monday I went to see a doctor who specialises in Lyme disease. I was there almost two hours, he took a full medical history and examined me and I have to say I was not at my best. I still have the costochondritis I had in December which prevented me from travelling to Denmark, I had muscle spasms in my back from coughing, I have still have the dregs of Bronchitis from Christmas and I was exhausted from the last ten days after my Mother died. I wondered if he would be able to see the wood from the trees. He suggested I may have Lyme disease and I ought to get some blood taken and sent to IgeneX in California which I did the next day. The results will take about 6 weeks to come back to me.

On Thursday by first class post I received the copy of the letter the Lyme Doctor had sent to my GP. In it he stated his opinion that my symptoms were "consistent with Chronic Lyme disease" and that I had had it "possibly since 1992". I should start treatment straight away. I cried, I was gob smacked, even though I had gone to see him on a hunch, albeit one which my GP agreed with, it was a shot in the dark. I know now that I probably don't have ME or CFS or Fibro or any other of those basket conditions which the medics don't want to know about. I probably have Lyme Disease, though I accept the medics are not too keen on that either.

Proving the little whatsits are in my system is another matter, this bug is notorious for hiding and giving false negative results. But the big thing for me is that the clinical signs are there that I have probably had this for 15 years.

Mentally I am on a high. I know that a cure is unlikely, I know that it will be a long hard trial to get any sort of treatment and that it will most likely get worse before it gets better but I'm giving it a go.

After all I haven't got much to lose. As the lovely man said "You don't have much quality of life right now do you?"

I just wish my Mother were here to tell. I haven't made it up after all and it certainly isn't all in my mind.

Sign here for ME

Please sign this petition on the government's website to help publicise the great injustice done to ME sufferers in the UK today.

I was gearing up to do something similar along with my friends Greg and Linda Crowhurst but whilst I was taking care of things in the Midlands someone did the job for us. Good on them!

This is a good chance to get everyone you know in tune with ME and to give the government a poke in the eye with a sharp stick to see if they are listening. Please do it and tell all your mates too (only available for people with a valid UK address).

Thanks.

It's all over

My Mother died one week ago today.

I am home.

I am recovering.

That's all I'm going to say.

Away with the fairies

I'm going away again. At least I get to see my sister!

I have 4 weeks to find my mother a new care home and then I have sell her flat. I was hoping for a quiet spring. Doesn't look like I'm going to get it.

I could be some time.

Just to whet your appetite

There is something Mega going to happen on the ME front soon here. No.... not my imminent visit to the Lyme doctor but something much bigger than that. I'm keeping you in suspenders for a while but I promise you it will be well worth it. Just don't ask until I am ready to tell. Keep watching and I promise you it's something to shout about.

Aside from that, life goes on as normal, well as near normal as I can get having still got this dreadful virus, Mother going slowly crackers in hospital and my sister in the Midlands where I am unable to visit her. I may try and see her later this week, after all I haven't seen her for 18 months. Oh and WH is sunning himself on the ski slopes too. Look out for those egg-yellow legs. He certainly picked an outfit to be seen in.

I'm Back

after 4 days of not being able to use this site. Blogger has been playing up big time. Not going to write much in case it all goes again.............

But we are here, we are alive and even though we're not kicking too much it's nice to be somewhere.

Not much to report other than we may have to move my Mother to a permanent home later in the week so I'm pretty tied up with that right now. My sister is here from NY and NO I have not seen her yet and not sure if I will be able to as I am banned from travelling just now. Fingers crossed something will turn up.

And fingers crossed this post will work too.

Here is the news

I said in a previous post I had some news. Well this is it. I have been investigating the possibilty of having had Lyme Disease for all these years and guess what? My GP agrees and has positively encouraged me to go and see a prominant Lyme specialist who has trained under the best in world, Dr Joseph Burrascano of Long Island. I go in 2 weeks time. Even if we are correct in our thinking it's notoriously difficult to treat but at least I would have some answers.

There is more about Lyme here although the most up to date stuff is at Eurolyme. One of the leading researchers is Dr Sam Donta and you can read some of his ideas here.

Other news is that my Mother is now in hospital suffering from a severe chest infection. I have been banned by my own medics from visting as my immune system is almost non-existent right now, so my sister is arriving from NY on Sunday. I haven't seen her for 16 months. The problem is now that I can't travel, WH is away and so it looks like we will not meet up at all. Maybe I'd just better contact another famous doctor, Dr Who, and see if I could be beamed up in my wheelchair and land in Mother's flat just in time for my sister's arrival.

The last pages of 2006

Over the last two weeks I have read loads, partly due to it being Christmas (and what nicer way to spend the time?) and partly due to me having been even more under the weather than usual, so I had lots of time to read in.

First up was A Complicated Kindness by Miriam Toews. I was amazed to read that Miriam was brought up Mennonite, a fact I hadn't grasped when I read A Boy of Good Breeding. Although told from the angle of the feisty, teenage daughter of a disfunctional family, it was still brilliant and would certainly make a good read for those much younger than me too. The insight into Mennonite customs was a revelation.

Next and in a similar vein was The Secret Life of Bees by Sue Monk Kidd, plucked from my mother's bookcase. Previously unread, she had received it as a freebie with a magazine and deemed the typeface to small to look at. Exploring racial tensions in South Carolina in the 1960s this too was a learning curve for me. I can't believe those things still happened in my lifetime. Time for a history lesson methinks. The teenager in trouble in this work was also trying to find out why her mother had left her but this time the ending was not so inevitable.

A third troubled teen struck out in the next book I read, Gods in Alabama by Joshilyn Jackson. Again the protagonist had secrets which were not so secret as she believed but it took the whole book to find that out. A gripping read but somehow I didn't enjoy it so much as Between, Georgia. Maybe because the themes of all these were vaguely similar.

A complete change of scene then and Good in Bed by Jennifer Weiner. This was a much more adult theme but almost cringemaking in it's tale of a girl whose sex-life was spread over the local newspaper by her journalist ex. I have to say I spotted the boyfriend to be as soon as he was introduced and was waiting to see when they would get together. The ending, too, was a bit twee with Cannie's salvation in the new bloke, a new baby and finding out that 'thin' wasn't neccessarily 'happy'. Not like real life at all.

Lastly was Nice Girls Do It by Sarah Duncan, the only one of my Christmas reads to be set in the UK. This was a simple sort of no-brainer, just right for passing fluey hours in bed. The sub-title Sex, Lies and Gardening had taken my eye but really there wasn't much gardening at all, more a tale of historical investigation with a twist. Essentially a classic tale of woman has flash boyfriend with everything and gives him up for the handsome stranger who appears to have nothing. Just like eating candyfloss.

Which I suppose was as good a way as any to end the festive season.

And a Happy New Year to you too

Driven out by my noisy neighbours we are spending the next two nights in an hotel. After 4 nights running last weekend WH had just about had enough of being kept awake until 4am by shouting, dogs barking and general carousing and un-neighbourly behaviour. Last New Year was worse, they didn't go to bed at all and the party was still going strong at 7am. Accordingly on Boxing Day WH booked two nights in the nearest hotel to our middle daughter's house in the midlands. Even if they were not going to be at home (they work over all the holidays normally) he reasoned that we would at least get a good couple of night's sleep.

The last laugh however is with those next door. It has all gone very quiet, the brother is in residence and the recycle bins are already out in the street for next Tuesday's collection. It seems our neighbours have also gone away so we could have stayed at home as normal.

Happy New Year.

Twelve gifts I received this Christmas

1. A dogwood bush
2. A pair of thermal gloves
3. A pair of thermal slippers
4. A HUGE box of chocolates
5. Women and Ghosts by Alison Lurie
6. Tamarind and Saffron by Claudia Roden
7. The Collins Bird Guide
8. Collins Wild Guide to Birds
9. Apples for Jam by Tessa Kiros
10. A Wild Life on Exmoor by Johnny Kingdom
11. Ta Dah by Scissor Sisters
12. Stainless steel cheese knives in the shape of mice.

Now, do my friends and relatives know me well or what??

Christmas night in the shed

"I have to hold your hand because it's scarey outside in the dark and you won't be frightened," In truth it was more likely to be my 5 year old grandson who would be frightened but anyway we held hands.

"You have to go on the stepping stones because it's very muddy out there," We gingerly picked our way across a path of chip-board paving slabs laid across the lawn which curved round to the little wooden door. The key to the door was retrieved from a little pocket and pushed into the lock. "You open it, it sticks, but I'm having a padlock next week," I duly opened the door.

Beyond the door was a little wooden room, walls painted in camouflage shades. Across the far one was a worktop with cupboards underneath, above it was a list of rules, no drawing on the walls, no being messy and no playing with electric. "That's my rules, so anyone knows. You have to take your shoes off really but you needn't, you'll get too cold"

"I can do anything in this shed, painting, reading, building, sawing. It's all mine, Daddy and Grandad made it and Father Christmas brought me the key." The earnest little face looked into mine to see that I understood.

"This is my own real shed-house and I can do painting whenever I want, look." I was treated to a master class, each paint was shown to me, a brush stuck in and thoughtful lines in various colours streaked across the page. It was the Stable where the Christmas donkey lived apparently and had a star over the top, very seasonal. After that I was shown all the miniature tools, had a demonstration of how to saw wood like Grandad and even offered a drink from the diminutive water cooler. A cloth was on the worktop and was used for keeping the windows clean, "Just so I can see outside, and I've even got a mirror so I can spy who's behind me."

"I can even read in here." A quick rummage in the cupboard produced 'The Owl who was Afraid of the Dark'. He sat back in the chair and open it at random, "Hmm let's see, a, up, me. Yeah, well I can only do more easier ones yet." He jumped down and returned the book.

A big smile beamed out of the normally serious little face, "I love this shed-house and it's all mine. I could kiss it all over and I could even marry it sometime. Hmm, might be a bit big though".

A bonus: Christmas MeMe

A Christmas Meme from Di

1. Egg nog or hot chocolate? I’m allergic to eggs so it has to be chocolate but I can do without the cream, flake and sprinkles, au naturel for me.
2. Does Santa wrap presents or just sit them under the tree? Definitely wrapped and definitely under the tree.
3. Coloured lights on tree/house or white? Coloured on the tree, white in the window. None on the house.
4. Do you hang mistletoe? Of course being as we are in one of the places it grows really well
5. When do you put your decorations up ? Round about the 10th then they’re up for 3 weeks.
7. Favorite holiday memory as a child: It must be snow.
8. When and how did you learn the truth about Santa? My Mother told me when I was about 7 but swore me to secrecy as I was NOT to tell my younger sister.
9. Do you open a gift on Christmas Eve? Not usually unless someone particularly asks me to open a present they have given me.
10.How do you decorate your Christmas Tree? 200 lights, lots of sparkle and a theme, this year pinks, pastels and lilacs.
11. Snow! love it or dread it? I adore it.
12. Can you ice skate? Ever seen a whale ice skate??
13. Do you remember your favourite gift? An amesthyst necklace, last year.
14. What’s the most important thing about the holidays for you? Family, doing nothing and cold, sliced turkey
15. What is your favorite holiday dessert? It has to be Chrsitmas Cake, followed by Christmas pudding and mince pies. Love them all!
16. What is your favorite holiday tradition? Not sure really, we don’t have many here.
17. What tops your tree? A fairy or 3.
18. Which do you prefer: giving or receiving? Well I love choosing things then seeing the person’s face when they open it.
19. What is your favorite christmas song? O Little Town of Bethlehem including the verse that rarely gets sung that says ’the dark nights waits, the glory breaks and Christmas comes once more’ Just reminds me of waking up in the morning and everyones lights are on really early!
20. Candy canes! yuck or yum? Yuck, say no more.

This is not a tag but if anyone wants to do theirs post your link here or on Di’s blog.

We wish you a Merry Christmas and a Happy New Year

Well it's finally upon us and I thought I'd never be ready, having lurched from one crisis to another this last week.

I'll have some really big news early in 2007 and hopefully some answers to my continued illness.

Until then watch this space and have a great Christmas.

Another tough week

I started on Methotrexate 2 weeks ago. This meant I have had to stop all other anti-inflammatories and vitamin supplements. The rationale behind this being that Methotrexate can affect your kidneys as do the anti-is and it also works against Folic acid in the vitamins. No worries I thought. By the time those wear off the meth will be almost ready to kick in. A few days discomfort will be worth it.

In reality it is not like this. Today I have had borrow a wheelchair for my visit to my Mother next week as I can't walk more than a few yards. It's like my legs have switched off and I can't find the switch to put them back on. Add one masively inflamed left wrist, fingers where red angry, painful lumps are popping out all over and the remnants of the costochondritis and I'm not a happy bunny. The best bit is that I get my ESR and rheumatoid factor amongst other things tested weekly right now. It will be interesting to see how those change.

All this means that I am doing very little and but it is taking me all day to do it. Sorry I haven't been here more. I would have loved to be able to.

Birthdays, Danish - style

Well Ms A's party went ahead on Saturday and although I wasn't there to take part, WH was and has phoned me every few hours since to give me all the gen so that I didn't feel that I had missed out!

It seems that 'big' birthdays are even bigger in Denmark. I mean usually we don't always want to publicise the fact that we're getting older but really, putting the national flag in your front yard is hardly being discrete.

They also have a birthday cake for breakfast which could be seen as sensible, you can't say you don't have room to eat any! The cake is what we know as a Danish pastry but this one is person shaped, male or female, and is huge. Then everyone sings a song thay have made up about you. Well fine, I hope it's only friends who take part or you could be in trouble.

The main celebration takes place in the evening. This do was catered, no things on sticks and finger food here, Pork Stew or Venison was the order of the day, along with lashings of mashed potatoes and veggies. Filling or what?? Sounds like the assembled throng needed it though to wash down the several gallons of chili vodka and champagne on offer.

And you know the really amazing thing? No one got drunk and no one misbeheaved. A perfect recipe for a birthday party. Think I'll have my next one in Denmark too.

PS WH is due back tonight bringing me a slice of left-over birthday cake!!!

This week, mostly.....

I'm reading.....

Brick Lane by Monica Ali. I just love this book. Having spent part of my life working with a lot of Asians and having Asian friends the dialogue is just so right. I'm only half way through but savouring every moment. The story of the 19 year old Nazneen sent to London to marry the revolting, older man, Chanu, is so typical of the culture and gives a great insight into the life of Muslim girls who follow the same path.

I'm eating.....

Not a lot. I started methotrexate on Monday for the RA so everything tastes strange and I have sore lips which I gather is quite common with this drug. All I want is drinks with strong flavours. Water just doesn't do it. As one who drinks water 99% of the time I'm strugggling to find anything else I like. Meanwhile I am eating blue cheese on toast, marmite and curry!!

I'm watching.....

the leaves on the old oaks opposite my house finally drop. Those treees are always late, late to leaf and late to drop but I can't remember a year when they have lasted quite so long. After yesterday's gales there are few leaves left now so I can see the tree creepers which love their big trunks and all the other flocks of little tits which use them as a meeting point.

Denmark, here (one of us) goes

Sadly not me.

Having been struck down with a nasty bout of costochondritis such that I can barely move, my only move today has been to stay at home whilst WH set off on the journey to Ms A's and the forthcoming party.

Yet again I am living my life vicariously through 'he who likes travelling'. Looks like the most exciting thing for the next few days will be watching TV and answering the phone when WH calls to tell me what he's doing.

Meanwhile it's gone very cold here. Looks like Denmark sent me their weather.

Out Clicked by OneClick

Yesterday I posted about Greg Crowhurst's new video regarding the Gibson report to the OneClick Protest Board. His wise words counseled moderation and to use the report as a gift which the ME community could use a base for further bringing the subject into the public domain. All posts are moderated, nevertheless I was rather surprised to receive a curt note from the moderator and self-styled censor that my post was not welcome. Other remarks in her email I found deeply offensive. I countered with the copy of a comment to Greg from another member of OneClick which was very supportive.

The reply I next received was even more offensive and I was really shocked at the words used. I won't begin to reproduce them here as they are not the sort of thing I would expect to read in polite conversation not were they the sort of terminology conducive to productive dialogue. I was then hastily removed from their membership list and locked out of the site.

My point is this: We all know that the Gibson Report is less than ideal by a long stretch but surely as sufferers trying to get some sort of public recognition we use the opportunity to bring this to the public's attention and highlight the way that the Psychiatric Lobby has hi-jacked this disease for it's own. A point which Gibson actually makes very well.

As Greg Crowhurst so eloquently puts in his video surely by infighting and divisive action amongst the patient groups we are playing straight into the hands of the Psychiatric Lobby at a time when we should all be joining together to further our cause. This is surely a case for moderation in all things and I am equally sure that we will not win the fight by rude, overly aggressive dialogue. We want to get all the medics and researchers on our side not wondering if perhaps we are all crazy after all.

Neither here not there

Sorry I have not been around recently. Looking after my Mother has taken it's toll and I am in the biggest flare I have had for 10 years at least.

The good news is that I started on the methotrxate last night so should hopefully be gaining some relief from the RA pretty soon. The bad news is that this involves weekly blood tests - again - so I will be looking even more like a pincushion.

Our planned trip to visit Ms A in Denmark is under threat now, we have decide tonight if we go ahead or if we stay. I suggested WH went alone so as not to disappoint our hosts. The jury is still out on that one.

Watch this space.

The Iris Murdoch effect

or some things I have heard over the last few days spent with my Mother:

I think I was born in 1938 or was it 1976?

I'm not telling that woman how much I earn, she's got a loud voice.

That woman didn't even know how to cook a baked potato, she said you didn't peel it.

Look I can stand up, does that count as walking?

I gave that cleaner £50 for doing the laundry, she said it was a bit much.

I haven't been down stairs for 5 years, I did go last week once.

I couldn't eat another thing, unless it's pudding.

Me, confused? I'll have you know I 'm bringing up 2 small children on my own.

I've never eaten a sandwich in my life, well maybe a prawn one.


The EMI bed beckons.

The Gibson report is out

At long last someone is listening to ME patients.

To Dr Ian Gibson MP I can only say thank you.

Read Invest in ME's response here

Read the full report here