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.