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.