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.