Living with Lyme….

f36cc77673d2af7260dda109effc8d50So, a little drunk this evening, well over due for a post here and what the hell…here goes…..

I am fucking fed up with feeling ill all the fucking time!

I take that back. I was feeling well after my last bout of antibiotics….but then as time went on after treatment..it all came back. With more.

I have had a very busy few months, did more flying than a pilot would normally do and got on with life…thinking, this is ok, I have busted the bastard and I am al-right!

Sneaky bacteria don’t die that quick, especially when you have had them invade your body for a few years and a months worth of doxy doesn’t touch it….even worse when your ID specialist at the hospital, pretends to be your friend and is so psychic and tells you the meds are working as your antibodies are lowering, based on blood tests that were done before you even started the treatment!

I am not a cynic, but when you get the disease and come to learn that blood tests mean fuck all in the diagnosis…and they clearly don’t as I had two Lyme tests within a week of each other, where my antibodies were very high the first week and low the next (coinciding with the level of how ill I felt between the two tests as well)…doctors will treat on the basis of blood results. A completely fucked up view if you ask me, when Lyme (or borellia)…do the research…..doesn’t actually stay in the blood for long as its a spirochaete bacterium that worms its way into the tissues and muscles/even the brain…and starts it passage of damage, with the consequence of a myriad of symptoms that CAN be classed or passed off as other non specific illnesses. (CFS, MS, Fibromylagia…to name a few).

Syphilis is its cousin, also a spirochaete bacteria….get your head around that!

But, I am living with it and have been very unwell. I come from a background of healthy people….we don’t do illness. Come on, stiff upper lip, you’re a man (but I am actually a woman)….buck up, get your head out your arse, life is for the living…….(my doctor wanted me to see a psychiatrist before he even considered the idea of treating my illness…believing first that I had manifested this)!

But….when your knees (that were perfectly normal before you get bitten by a tick) work as they should do, then suddenly deteriorate over a few months….) blinding headaches where IB don’t touch, then nerves start having a dance all by themselves when you don’t have your ipod playing…the glands in your throat swell up to bursting point and muscles ache so bad that hunching into a quasimodo look a like is the relief from the discomfort that actually contort you into a quasimodo look alike to seek comfort…but its your head, because we have this great thing where the brain can ignore the pain if you need to function….you are screaming at your brain, cos it won’t. It shuts off and tells you that nothing wants to work, so it’s going on strike and you end up walking around like a zombie…filling in the bits yourself when your brain won’t do it for you.

When every muscle, fibre, movement hurts…to talk hurts and takes great effort….climbing the stairs can feel like climbing Mount Everest. You have aged by 100 years…and yet to everyone else you look no different.   Constantly believing the doctor was right…its’ all in your head, you need to go see a psychiatrist. I could waffle on and on about the other symptoms as I have just mentioned a few and and any other ‘Lymies’ reading this know how fruitless it is to bang on about the other unpleasant aspects of this disease. If you don’t have it, or don’t know anyone else who has it and you were to meet me, despite how I feel inside I will greet you as a regular normal person…then you wouldn’t have a clue. But then if you were with me 24/7 you would see the other side, where I can retreat, out of view and deal with this on my own.

I suppose the reason I am writing this is to tell you as I have done from the start of this journey, that it isn’t over yet. Last week I started my second stint of the antibiotics and it knocked me for 6! I wont go into detail, but reread the first line with all the F’s in it and you get the picture…. I am off to the UK again next week and now have managed to get an appointment with a private doctor who is a specialist in Lyme Disease…I have never looked forward to such a thing in my life….I don’t do doctors, haven’t done in years, but I am bloody hoping that this one will knock this on the head, because quite frankly I have had enough and want to get back on with my life…….like I used to!

Can you get Lyme Disease in Madeira? – Update

antibiotics

It’s been a few weeks since I updated my Blog on the Lyme Disease topic and many of you have been asking me ‘howz it goin’ ?’

I am finally on the antibiotics! Although you may think I am relieved now that I am getting the treatment and that I am near to closing this chapter, I am sadly, far from it.

As you may have read in my previous posts, that a little help with educating my doctor on my part – about Lyme….has finally got me access to medicine BUT it doesn’t end there. My story is no different to someone living in the UK…shouting to be heard and a non literate Lyme doctor knowing absolutely nothing about it…..I am in Madeira where it is supposedly non existent or rare and many feel the same about it in the UK as well.

My second letter to my GP sparked a response and as promised I was referred back to the witch at Marmaleiros. Again I turned up for my early morning appointment and was first to arrive and last to be seen. No blood test for co-infections was forthcoming – another rant from self imposed God witch to a different friend I took this time (whose Portuguese was not as stunning as my first friend’s, in the hope that this woman would actually want to talk to me for a change). The same bizarre appointment as before, whipped in and talked at (in Portuguese) with prescription pad already in hand, writing as she babbled on about how my results were negative and that I was an experiment. Still no consultation (this is a consultant) and dismissed with a “Happy Now?” as the prescription was thrown at me….no opportunity to have a chat..I am still the ‘hot potato’.

We left and headed for the pharmacy cashing in the token gesture to get me fixed. Two weeks supply of Doxycycline, 100mg’s twice a day. I have a follow up appointment on Thursday. You may think I am happy…but in reality and to be honest I am not.

From my own research and going back to what Stella advised from LDA UK patient support…two weeks, Doxycyline at 100mg twice a day may be an appropriate course of action when one has just been bitten, but when one has been bitten a few years ago, this is going to barely touch it. Her recommendation was double that dose at the very least…”Because the bacteria can penetrate the spinal fluid it is important that high enough antibiotic concentrations are reached in the spinal fluid (CSF). Research has shown that doxycycline at 200mg twice a day achieves the necessary levels in the CSF much faster than with the often recommended 100 mg twice per day [1]. This is likely to be important in Lyme Neuroborreliosis and the Swedish hospital conducting the research quoted state “Oral doxycycline treatment (200 mg twice daily) has been the recommended treatment of Lyme neuroborreliosis in adults at this department since 1987”.

So, I am behaving myself and taking my pills as directed by my Madeiran professional who is the doctor and knows better than I do, but I am still frustrated….I have not yet had a consultation with her, she hasn’t asked me a single question about me or my bites or symptoms (and I have been feeling ok this last month incidentally)…I have had no interaction with her other than her lecture about my blood tests being negative and in an unspoken breath how I am wasting her time because of that….I am burning to ask her, why my blood tests show that I am making antibodies for Borrellia…..surely they wouldn’t do that if I didn’t have it and does this in fact mean that everyone makes antibodies…even if they have never been bitten by a Borrelia infected tick?

But I have to remind myself that its not what my blood says…lets go back to the bites again and of course the Em rashes I got – from my garden – in Madeira.

I am rambling and not getting to the point – which is this; within my research I have joined a couple of Lyme groups on facebook. This has been an invaluable source of information and support. I know I am not alone and just because I live in Madeira, I am not an exception…I have got further than many of my fellow infectees in the UK! Although I am dealing with an alienated God complexed medical community, being a foreigner may have somewhat helped…but to what degree…? It seems I am no more worse off than someone who lives in the UK, where supposedly Lyme is more acceptable/or known about…that no matter where you live, it is a problem and one you have to fight to gain recognition of.

So, I have activated a back up plan and one that many who read this might think it a bad idea, but I have done the research and strongly feel that I now have to take my health into my own hands and become a doctor to me. I have been on the low dose of antibiotics for a week now and they are definitely doing something as it has kicked my permanently swollen neck stones into gear and half an hour or so after I take my meds they come alive, by protruding out of my throat, before calming down and reverting back to stones again. Who would have thought that one could be so akin to their lymph nodes under their face…I was jumping for joy when they found life again four days in! My ankles are a bit unsightly as they are puffy as are the backs of my knees and when I walk up the stairs my knees creak more loudly…eating IB like sweets again as the headaches are back, but no nerve twitching last few days or tinnitus, or heart palps. Still very tired (but put that down to a busy few weeks with family)..functioning or firing on all four/three cylinders at the mo (however many we have) not had a bad turn since before I went to Scotland.

As I only got given a 2 week supply of the meds and I need more than that and double the dose, I have acquired some more as back up. My intention on Thursday is to force the witch to actually have a discussion on the topic and get her to let me speak….if that fails I will take this into my own hands and self medicate.

The scary part about all of this is, that I can’t be scathing about the doctors and their lack of knowledge as there are only so many hours in the day and they have so many combinations of health issues with their patients to attend to. I had the time to do the research on this and it has taken not just hours or days, but weeks to truly understand what this illness is about. With doctors and their busy schedules, including the fact that they are human beings too and have a life outside the job, I wonder how they can keep abreast of all the new changes, updates, discoveries in medicine….and all the rest. It must be overwhelming for them at times, when faced with a person like me, who is armed with the latest research and babbles on in their own jargon…quoting stuff off the net and armed with letters and recommendations from a legitimate entity they have never heard of.

And, as a side thought…yes it is easy to become so consumed by the research to the point of obsession and yes I have read many other sufferers who seem to come out with some seriously ridiculous sounding implausibility and tag their symptoms as Lyme based…and yes, mine do seem random and yes, I often think its in my head. But, yes, I do have Lyme…and I am so thankful that my symptoms are no where near as bad as some of my fellow sufferers in the groups that I belong to……and I don’t want to be, which is why I am pushing so hard to knock this on the head and now!

For those of you who are interested, there is a documentary on it which is fascinating to watch…it is based on the US Lyme Disease which attacks the neurological system as they have a different strain of the bacteria than we have in Europe. It’s called “Under our Skin” and can be watched by clicking the link  https://www.youtube.com/watch?v=2JgR_Jfbhv8&oref=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D2JgR_Jfbhv8&has_verified=1

Lyme Disease in Madeira – Part 2

getty_rm_3D_illustration_of_lyme_disease_bacteria

So, here we are again….another instalment over my personal saga with the dreaded Lyme word. I am sick of it. My doctor called me this morning, which was the result of another letter I sent him…after the last consultation where he probed about the state of my mind again, hinting that a bit of counselling might help!

I am fed up with hearing that Lyme is rare in Madeira, it’s almost as if I have forced it upon myself and that one rat in millions chanced a tick and that tick bit me. I found a scientific report that did a study on ticks in 1994 the conclusion of this study was this: “Because I. ricinus ticks frequently attack people on Madeira Island, Lyme disease should be considered as a cause of locally acquired human illness.” This was a study done some 20 years ago; ‘Rats appear to be the main reservoir hosts of the agent of Lyme disease on Madeira Island, and cattle and sheep serve as definitive hosts of the vector tick’. So, 20 years later, Lyme disease is still supposed to be rare and I am treated as if I am stupid and that it couldn’t possibly happen to me. (full article here http://www.ncbi.nlm.nih.gov/pubmed/8066380)

In my last blog about this, I had been to see an Infections Specialist up at Marmaleiros hospital. That appointment was so ghastly with an incredibly rude doctor, that when I saw my GP for a follow up, we discussed the need to go back for the second appointment. My PCR test had already come back and as I expected the result was negative. I knew that to go back would be a waste of time..the negative result ensured this and he agreed.

In between all of this, I had been in contact with the Patient support team at Lyme Disease Action UK…I sent them an email including my time line, description of my bites and EM rashes and a brief synopsis of my symptoms. I asked 4 key questions and the reply back was encouraging..this is what was said:

To answer your specific questions –
1) If you get bitten and present the EM rash…is it definite that you have been infected with Borelia and that you have stage one Lymes Disease?
There are very few rashes that cause an even spreading redness clearing in the centre. If you had this, then it is caused by Lyme disease.
2) Given the above, can your immune system fight off the bacteria successfully and recover fully from it?
Yes; like any other disease your immune system can fight off the Lyme disease infection. It is more difficult because the tick injects immune suppressants into your blood allowing the bacteria a chance to multiply before they go further on.3) If the answer is no to question 2 – Is there a reliable test, given the time length since the infection?
There is no test which can guarantee to rule out Lyme disease. There are some well documented reasons for negative tests in people who do have the disease. Read the article in our Newsletter from January 2015.

4) In your opinion, what should I do in response to my doctor dismissing this situation…where else can I get help?
I suggest hat you discuss with your GP, and try to do this at a time when you have objective symptoms that can be seen or felt – eg swollen glands. Lyme disease symptoms overlap with those of many other conditions and diseases and this does genuinely make it difficult for doctors. Although there is no excuse for her behaviour, your ID doctor may never have come across a case of Lyme disease before and may therefore be on the defensive, and very much relying on a test result.Your infectious.

Sometimes, if the evidence is strong enough despite a negative test result, a GP may feel able to prescribe some antibiotics. It is a question of balancing the harm of treating someone if they don’t have the disease versus the harm of not treating them if they do. This is worth a try, as GPs can sometimes be much more pragmatic. So perhaps see if you can cultivate the relationship with your local doctor, present the information above and say that you can now see how difficult it is, but given your symptoms, would a course of doxycycline be sensible?

So, with a few more emails and some great advice imparted to me from LDA UK, I contacted my doctor by letter (last appointment he made it clear that this was the end of the matter, results were negative, I don’t have the disease now……now let’s look again to see if you need to go to the funny farm)! LDA UK also sent me a ton of info supporting the reason why I had a negative test. Information about treatment and the reasons why…try to convince your doctor, work with him, educate him!
This made sense and renewed some hope after feeling that there was none left after my last appointment. I was confused as to my negative result and angry that the antibody test to Borellia was 0.86, but to be a positive it had to be a 0.90….that surely if I had antibodies to start with, didn’t that mean anything? The second blood test that came back, my antibody reading was lower than the week before and LDA UK’s analogy of looking for a needle in a haystack started to make sense. I collated the info they sent me and spent the entire weekend, printing it off and writing a covering letter back to the doctor with copies of the files…and then I finished it off with my own summary, rather like a lawyer would before the jury would deliberate at trial. This is my statement;

My comments and reasons why I think I should be treated for Lyme Disease

 

Fact: I was bitten twice by ticks and presented two EM rashes – ankle and calf

I did feel ill after the bites (emails I sent to friends and family refer to me complaining about it, this was a few weeks after the bites). Although I didn’t take a photograph or see a doctor, I did show my family and a few friends. They are prepared to back me up on this if there is any further doubt! I know I got my bites from being in my garden as I spent a lot of time in it. I grow shrubs, flowers and a lot of ground covering plants. My garden wall separates my flower garden from a large banana plantation next door. We have an abundance of feral cats in the neighbourhood (I feed 4 of them) and I regularly treat my two dogs with Advantix to keep the parasites at bay.

Given that the study of ticks and Borrelia is derived from rats in Madeira (see attached paper on this) it would not be unreasonable to assume that living next door to a banana plantation and gardening in shorts and flip flops , would indeed be an ideal breeding ground and ideal host given the attire. Furthermore, as it is rare, it is not impossible. I can now see why the local agricultural workers in my area wear wellington boots, with their trousers tucked in and long sleeve shirts in the hottest of weather, maybe they are already aware of the risk!

I have been premenopausal for the last 2 years and attributed some of the small things that were not right with my body with that. I researched menopause and inadvertently stumbled across pictures of EM rashes and read up a little on Lyme disease, but as I was looking at symptoms relating to menopause, didn’t connect the dots with Lyme until the symptoms started to become more noticeable and more frequent than before.  I still didn’t see a doctor over this as I wasn’t sure that they were related.

As you know, I booked an appointment to see you in early March (had to wait just over 2 weeks from booking it to having the appointment) during that time, I was again feeling really unwell as well as aches and pains and in the end I drove myself to A&E in Ribeira Brava. They told me I had Fibromyalgia and treated me for that. When I did see you and we got off to a bad start – which I am so pleased we were able to resolve, you sent me for tests and xrays of my knees…another problem that had been getting worse and one that was getting worse quite quickly!

We discussed the possibility that my other symptoms could be Lyme related and you did send me to a specialist and gave me blood tests. At this stage I really started to research Lyme disease more thoroughly as I wanted to be more informed about it as we were looking into it. A lot of my symptoms overlap a myriad of symptoms that Lyme Disease can present and I am thank ful that I don’t have all of them….or yet! As you will discover it is called the great imitator and that one of the first signs of going into chronic Lyme is arthritis in the knees! I am experiencing nerve problems with the random twitching, weakness in my arms, dead or numb toes….headaches that refuse to go, even with ibuprofen and I am getting irritated with my frequent forgetfulness of the simplest of things. Back ache, muscle aches, stabbing pains in my head. Constantly feeling tired, days where everything is an effort to do, feeling unwell and I have to mentally push myself! Not to mention my swollen necks glands that make me look like a turkey ready for slaughter! This week I have had short episodes of tinnitus, which start as suddenly as it stops…this is very irritating also. White irritates my vision, floaters. I’ve had a few dizzy feelings when sitting, this was something I had last year, then went away.

Then I have good days too, and I feel fine, even my knees don’t hurt on a good day! Today, I feel well.

Of course I read the above and all of it is so random and doesn’t make sense, so, do I have something neurological going on and need to see a neurologist … do the aches and pains mean I need to see a rheumatologist….do I need to see a shrink because this is all psychosomatic and I am making myself think I am ill?

Let’s go back to Lyme Disease then and take a look at what that does when it starts to invade the body which can be months or even years after being bitten by an infected tick…..that makes a lot more sense to me and my symptoms don’t look so baffling either – let’s look at my knees for an example, could the quick degradation to them not be related and suggest that I am in the early stages of the chronic form of the disease?

Stella in her letter has explained why the Blood tests are inconclusive and should not be taken as a firm diagnosis that I don’t have the disease just because they came back negative. That taking the blood is like looking for a needle in a haystack – and if you go back to my 2 Serology tests that were done within a week of each other and look at the different IGg and IGm on both tests the numbers don’t match, which suggests that she is right with her analogy of the needle and haystack. A PCR test looks for bacteria DNA…if taking blood and the bacteria has passed into my tissues, then testing blood for this would surely be the same as the reason for the Serology test. If you really dig deep, there is no blood test that is conclusive and that is probably why so many other people around the world are misdiagnosed with this disease.

Stella’s recommendation was to try and work with you on this topic and this is why I have sent you another letter and all the material attached. In her argument at the end of the first letter “It is a question of balancing the harm of treating someone who doesn’t have the disease versus the harm of not treating them if they do” and “but given your symptoms would a course of Doxycycline  be sensible?” I would add another argument;  that would it not be cheaper on the over worked resources of the medical profession in Madeira to try this approach first before sending me off to a neurologist or any other specialist in the hope of finding what is the cause, when it could be this?

And then, let’s go right back to the beginning again, I had 2  tick bites and 2 EM rashes and I never saw a doctor and as a consequence contracted 1st stage Lyme disease. This was not treated and at that time if I HAD gone to a doctor and received treatment for it, I would not be here now. As Stella says  “like any other disease your immune system can fight off the Lyme disease infection. It is more difficult because the tick injects immune suppressants into your blood allowing the bacteria a chance to multiply before they go further on.” And in a later communication “Given that you had EM rashes, you had Lyme disease once. There is no test of cure, but you have symptoms as evidence of a problem. If he is short of resources, it is much simpler to give you a course of doxycycline than to persist with multiple visits and referrals.”

If we look at the information I have sent you regarding the top ten tips to prevent Chronic Lyme Disease which was written by the International Lyme and Associated Diseases Society and look at numbers 5 & 6 and more importantly no 7 ‘The wait and see approach to treatment maybe risky’. And also the ‘What is Lyme Disease’ Fact sheet where it says “that if the bacteria persists OR was never treated in the first place, the clinical picture becomes far more complicated and patients need long term treatment” you can then understand why I am not letting this idea of my bites and rashes, the knowledge that I did have stage one Lyme Disease and no treatment for that, could be the reason for my sets of bizarre symptoms I am suffering with now.

If in the end I do have to look somewhere else, whether it be in the UK or a different doctor here, you are my GP and for future problems it would be much better for us both if you were the one in charge of a treatment regime if you were to agree to one. If I seek treatment elsewhere, you would not have that medical history and should I have health problems in the future this could become a problem.  Moreover, I could seek help elsewhere and need more treatment here, how would you be able to assist if indeed that became a scenario?

I am very concerned that if this is left, my symptoms will gradually get worse. I value the quality of life I have very much and do not look forward to having future health problems if this is not resolved.

I would also like to point out again, that my research, contact and subsequent communications with Lyme Disease Action UK is not a reflection or an indication that I have no belief in you as my doctor. I would like you to think that I am assisting you with my problem and I hope that together, we can resolve it.

Thank you in advance for taking your time in reading all of this and digesting the information I have sent.  ”

I popped the envelope with said contents in yesterday to the receptionist. At 10am this morning the doctor was calling me personally on the phone. He was, let’s say irritated and less choosy with his words. I had yet again become ‘the hot potato’ and I was not going away. He told me that he researched the disease more thoroughly and agreed that indeed I should have treatment for it BUT as he was not familiar with the disease, he did not want to undertake this by himself. He had rung the hospital and discussed it with them again and as a result they now want me to go in for more tests, this time for co -infections, as Lymes is still rare in Madeira! He waffled on about the different antibiotics that would be needed in order to treat ‘the problem’ and as such I am now being referred back to the bloody awful specialist again. His last words to me were, can’t you get a second opinion in the UK, to put your mind at rest? Had I not taken that call whilst in the waiting room at the clinic waiting for my ECG appointment…I would have conceded there and then. But the receptionists overheard my conversation with him and quizzed me about it after.

“Oh dear, you poor thing, you have that doctor!” and ” he has a dreadful reputation, he thinks everyone is crazy when they are truly ill” and ” he told my dad at 60 he was too old to drive, but that old fart is nearly 70 and is still driving” and “insist on changing your doctor, he is no good, go see this one, that one” It did not instil a vote of confidence on my part, having felt that the fact that he rang me himself was a breakthrough in the Madeiran ways of the medical world. Now I saw that by my challenging him, he could not wait to palm me off to someone else and to the worst doctor of all, back up at Marmaleiros. They call it Karma…but I don’t give a shit…this is my body, my health that they are playing with and I am going to make sure that I am as informed about this as I can, before I get fobbed off or prescribed anything.

I just find it incredulous that the attitude of something that is supposedly rare means you are barking mad if you think you have this rare disease. And it really makes me wonder how many people are walking around with it in Madeira who are being treated for other things that this disease imitates. If the locals over dress in summer, as they always do, they know something. They work the land and live with the insects and pests and protect themselves against the dangers.

And if the scientific study done 20 years ago, which I found on the internet summarises at the end with “Because I. ricinus ticks frequently attack people on Madeira Island, Lyme disease should be considered as a cause of locally acquired human illness.” and now only 2 years ago, mosquitoes have brought Dengue to Madeira, isn’t it about time folks that the medical community wake up and accept that these things may have been rare once upon a time, but now are just as much a threat today as Ebola is in Africa.

Next instalment will probably be a rant.. I now have to face the evil witch at Marmaleiros!

As this is something close to my heart (understandably) I will be undertaking some fund raising for the wonderful association that have helped me so far (Lyme Disease Action UK) although I am out of their remit, patient support (Stella) has been a fantastic source of good sound advice, information and support, particularly at the time when the door for help from my own doctor had been firmly slammed shut. She assisted with the process here and I am very grateful. Had it not been for this charity I would have had no help whatsoever. If you read this and feel akin to donating to a worthy cause, then please do consider them…here is the link to donate or surf their website with information about Lyme Disease http://www.lymediseaseaction.org.uk/what-you-can-do/donation/

Can you get Lyme Disease in Madeira?

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tick bite

This may be a slightly controversial topic to be writing about, especially about a ‘safe’ holiday destination such as Madeira. But as we all know, diseases and illnesses that were once thought to be only caught in some far off distant and exotic country, is far from the truth now. Two years ago, we were exposed to that new species of mosquito that carried Dengue Fever…..our countries have no borders…Ebola is a more recent and classic example of this.

But let’s get back to Lyme Disease…the disease I am interested in. A disease I am suffering with now. A disease I caught from a tick, in my back garden – which is in Madeira. You may have heard that Lyme Disease does not exist here. It does. My doctor told me this a few weeks ago, then back tracked after speaking to a specialist about my bites and said, ‘It is rare, but we have had a few reported cases recently’.

This is my story. I agonised whether to write it….yet. But I am writing it now, I have not come to a conclusion, and as so much has happened in the last few weeks, feel that now I can’t document this into just one article. I am on a journey and one that many sufferers like me are going on right now or have been on, BUT still have no conclusion.

Lymes is a nasty disease. It has been called the ‘great imitator’ as many people are misdiagnosed. Chronic Fatigue Syndrome, ME, MS, Fibromylagia, Arthritis, and many many more conditions are mimicked by the infection of the Borellia Bacteria. It is hard to find after the initial infection, as it crosses over from the blood to the brain and tissues when left untreated, reaping havoc with the body over time.

There is loads of information on the internet about Lyme Disease and I have exhausted myself with it all. I am not feeling confident right now at being treated for it as I am going through a process of tests and dealing with uninformed medical professionals who are not educated on the subject….maybe because “we don’t have it in Madeira”….

A couple of years ago, I had enjoyed a wonderful summer and spent most of it in my garden. My usual attire in the hot weather, was shorts and flip flops. My garden is slightly different to the normal ‘local’ set up as I don’t grow vegetables….I enjoy flowers, shrubs and lots of colour. I also live next door to a banana plantation. In late July, early August, I noticed a big rash on the back of my leg and a smaller one on my ankle. They were uncomfortable, so I stuck some IB Gel on them to calm the discomfort. I was concerned at first as both rashes grew, I could see a bite (puncture mark at the centre) and as the rashes grew resembling circles of white flesh and angry red rims in a circular form, I started to look up bites on the internet…at the time looking for spider bite rashes.

The rash on the back of my leg covered the entire calf, my ankle was smaller…eventually they bruised at the perimeter and over a few weeks gradually disappeared. I didn’t feel unwell immediately…but from some emails I sent (as I couldn’t remember) I had been moaning about feeling unwell…but I never saw a doctor. At the time I was looking at spider bites and couldn’t find anything that resembled the rashes….I soon forgot about it and got on with my life. I didn’t know about ticks or Lyme Disease or that my rashes were the classic bullseye rash (Erythema Migrans) from an infected tick.

As I said…I got on with my life….and as one who doesn’t go to a doctor unless I am dying….didn’t even go and see a doctor when I started with the early signs of menopause! Over the last couple of years I have had the typical menopausal symptoms of irregular cycles and hot flushes. Anything else I have felt, I blamed on this. I put up with it, made jokes of it and felt that this phase of my life to be very normal.

But….when ones neck glands start to swell up and down like a yoyo, aches and pains that randomly appear and disappear, backs of knees swell up and start to squeak and are painful…..days of brainfog and memory loss…headaches that won’t go with IB and twitching or trembling nerves to list just a few of the weird things that my body has put me through in the last year. That were very mild at first and were blamed on the menopause, but as they became more persistent, I realised that maybe there was something else going wrong. I took to the internet again and in my random searching of the unknown as nothing I had linked to anything specific, I came across a picture of the exact same rashes I had had a few years ago and suddenly realised that I had been barking up the wrong tree…a spider was not the cause but a tick! I read about Lyme Disease, but didn’t really process it.

A couple of months ago, my random and stupid symptoms were getting worse. I had good days mostly, but the bad days were debilitating..and as I live on my own, no one could see it. I was silently suffering (well not really as I moan to friends) but no one sees me…and no one saw that some days I would be struggling to get out of bed, wince in pain with movements and to climb the stairs would be an effort. To get my ‘shit’ together would take days…then on a good day and I would think I had gone crazy as I felt so well, that the previous days and how I felt was stupid…I would then go through a self imposed argument with myself that I had been lazy and procrastinating about everything…and I still am.

Three weeks ago, I had another few bad days….so much so, I got into the car and took myself off to A&E in Ribeira Brava. I had moaned again to a few friends that I felt unwell..but couldn’t really describe the feeling…I was unwell…my body was not normal…and it got so bad I got into the car and didn’t call anyone to come with me. I was diagnosed with Fibromyalgia, given a shot of diclofenac in my bum and sent home with a wad of exivv to take until I saw my GP.

A week later I saw my GP…..one I had registered with in 2013 but never needed to see until now. My first appointment did not go down well, when I mentioned that maybe my random symptoms could be related to my bites and EM rashes and his diagnosis was that I got a psychiatric Evaluation before he wasted time and resources on testing for it.

To cut a very long story short from that episode, a very carefully worded letter on my part was delivered to his office with a copy of some information about Lyme Disease, a study done on ticks and tick borne viruses in Madeira and a picture of my rashes….I was recalled personally by the doc the following day, a call and appointment with an infection specialist at the hospital had been arranged, xrays for my knees, blood tests and a neurologist referral.

I was now being taken seriously and it seemed that I was now heading in the right direction.

How, wrong could I be. That glimmer of hope was smashed with the infections specialist at Marmaleiros hospital……As soon as I sat in the chair, she told my translator “that if I think I have Lyme Disease, I can go home and treat it myself”. I hadn’t even had a consultation……The one and only test they had given me which was a Serology test for Borrelia had come back as negative…my antibody reading was 0.86 but to be a positive you have to be 0.90. I asked why they hadn’t sent my blood for a Western Blot test…which is the test for Lymes….the very unpleasant woman screamed at me, that she would do another…this time it was going to be a PCR test……I won’t go into detail here about that exchange but let’s just say that person has a severe God complex and didn’t like to be challenged…her remark to my friend as we left her office should suffice “trust the doctor to give ME the hot potato” and I am being polite in my translation!

I got 5 more vials of blood extracted from the back of my hand and am now waiting for the results of this test – which I am not pinning my hopes on. Through my research blood work at my stage of time – after the bite and rashes and the time since, this is a futile exercise anyway …Borellia will have crossed over into my tissues and brain..its been too long since I got bitten. And possibly why my ‘menopausal’ symptoms are more than just the menopause!

So, why am I banging on about Lymes? For the purpose of writing this it makes me feel better by writing about it. I live alone and have to deal with my inner demons all the time as I have no one close to share this with. I am aware that what I am going through can be misconstrued at it being something that is ‘in my head’ or I am imagining this…I have too much time to think..and yes, I have also wondered if I have manifested my symptoms to fit! But the reality is this. I got bitten by two ticks and had the classic EM rashes, I felt unwell and didn’t go and see a doctor. I had stage one Lymes Disease. That is fact. Can the human body and its own immune system cope with this by itself and eradicate it on its own? I have researched and the answer is NO. Do you have to be ill straight away? No. Can it present symptoms, months or years later if not treated at the time of infection? YES Is this what is happening to me now? Yes I am sure it is!

I’ve had more symptoms than I have mentioned in this article. I am astounded at the lack of diagnosis for people who are still suffering with Lyme Disease who cannot get a doctor to treat them for it..and this is in the UK. What hope do I have on an island that doesn’t think it exists?

I will be writing more about this subject and my journey as it happens. I just hope that no one here has to go through what I am going through..its unpleasant, frustrating and a subject that is brushed off into the wind. Awareness will help, but not solve the problem. My health is important to me, and I hope that I can find somewhere where I can go to for this, if its not be given in the place that I live!

Prevention for ticks:

When Levada or mountain walking, make sure you cover up and check yourself for ticks afterwards. Ticks lurk underneath foliage and will attach themselves to clothing and look for a suitable host to feed off.

Don’t panic if you get bitten. Ticks need time to feed….so quick removal is best. The longer the tick feeds the more chance you have of being infected with a tick borne virus. Look for the EM (bullseye rash) and seek medical advice if you do. (note: not everyone gets the rash)!

And yes the doctor is partially correct when he say’s it’s rare (and totally wrong when he said it doesn’t exist in Madeira)…not all ticks carry Borrelia. The Bacteria comes from rats…..so the chances of getting Lymes from a bite in the mountains is less likely than from your own back yard!

Update: For more information, I published this on my Madeira Active Network. To read the discussions on this subject or to add your own, please visit http://madeira-active.network-maker.com/ sign up, it’s free!

Lost a tooth? Dowsing will find it!

holiday_teeth_02

Although the title to my post, might, for my readers, seem a little weird. I can assure you that it is indeed relevant to my life in Madeira!

Last week I spent a weekend with a dear friend, who was only in Madeira for the month. We will call her M, so as not to embarrass her, as the tooth situation was hers. Two other friends were also involved in the hunt for the tooth, and I will refer to them as D&G for the sake of this post.

So, last weekend, I packed my over night bag to spend an evening of dinner, drinks and cards with my mates – M, D&G. During that day, I ate some crackers and cheese to stave off the hunger till dinner and to my dismay an old metal filling dislodged and I swallowed it, leaving a gaping and sharp hole at the back of my mouth. As always these things happen over the weekend, so a trip to the dentist was out of the question and as it didn’t hurt, I thought I would put up with it till I could get to the dentist on the Monday. Needless to say I was pissed off…and couldn’t help constantly dragging my tongue over the area…loosing the filling made me feel depressed.

I arrived at M’s house and announced my bad mood by telling her about my missing filling. I was greeted with a ‘You think you got problems?’ and as she said it revealed a grimace that showed a hole right in the front of her gob….one of her front teeth was missing! Stifling between trying not to laugh and reasoning at the horror…I gasped and immediately shrank at my initial reaction….we both had a tooth problem only hers was worse than mine.

“How the F%%%k did you do that?’ I asked.

‘God knows’ said she, ‘I took D&G home last night and THINK I took it out in the car and put it on my lap, I wore a skirt. It must have fallen out as I got out the car, but I searched everywhere, and I can’t find it.’

I was trying to comprehend her story…I never knew she had a false front tooth…..and the thought that she could take it out was a bit weird. But now knowing a new cosmetic secret, I had to wonder how one could simply loose something so precious. We discussed the problem and M could not remember what she had done with it. We talked through her movements of the night before and I still couldn’t get my head around how, with something so important could get lost……not be found, even after she had turned the car upside down, been through the house and even climbed into the communal garbage bin that day to find it!

We were off to pick up D&G and I knew that we had a good search party at hand and before we would leave we would find it. Back at the house, whilst M was cooking the dinner, the 3 of us took the house and car apart…our quest had started and we searched every seam, floorboard and cupboard, all to no avail. The tooth had eluded us. The entire evening was spent on the subject of the missing tooth and the following morning we restarted the search again.

Every room in the house was meticulously combed through. The car was torn apart (with in reason). G even scaled the wall to next door and combed the levada….D scoured the garden. G & I went over the car again, and sifted through the leaves in the road outside, even opening up the rain vents and sifting through them…..we went through her handbag several times, but the missing tooth was still missing.

Again, I mused that something as precious as a front tooth cannot just go missing, but it had. how can one forget where it went? But she did! I even got M to sit in her car and talk me through her movements into the house….still no joy and in an exasperated last and final give up over the tooth, M emptied the contents of her handbag again..in front of us, just to show that it wasn’t there. Amid the contents she had a pendulum in a pouch…..I grabbed it, and said ‘ this is our last chance…this will find it’.

“That’s mine” M said “It won’t work for you!”

“Yes it will” said me, as I took  it out of the bag and held it…her pendulum had seen better days as the bottom point was missing. Focussing on it, I tested the Yes and No rythm of her divination piece and satisfied that I was in tune, took it outside and asked if her tooth was in the garden. I did her car, the exterior of the building, then came inside and walked through every room in her house.

When I reached her bedroom, the pendulum came to life…I called M and we dowsed the room. As I hung it over her bed, it swung toward the foot of it. And I could feel the force, but I had already searched there the day before, so my head was telling me I was getting a false reading. But, the pendulum swung violently in that area and I told M that this was where it was. We searched the boxes at the foot of her bed, but no tooth. The pendulum was still going crazy in that area, so I pulled out her wardrobe and searched that….still no tooth. We were flummoxed…the pendulum was saying it was here and yet we couldn’t find it. My head was telling me it wasn’t there as I had searchd that area the night before, but yet the pendulum was not letting up. M suddenly decided that I was searching for her tooth and she still had a head full of more, that maybe as she was in the room it was giving us a reading on her teeth that were still with her. Laughing at her analogy I agreed that she should leave……and although her head full of teeth did, her pendulum still swung violently at the foot of her bed. I called her back in…”It’s definitely here M” I shouted, and we proceeded to clear out everything under it.

We pulled out 2 boxes that were sitting on top of cardboard packing cases…I had already searched the area the night before, but as I got down on all fours, I spotted something pink at the back and thought it was piece of tissue paper….as I got my head beneath the bed, a tooth came into vision, attached to a delicate papery pink sheath…it was small…..so small, no wonder it could easily get lost.

BUT! I had already looked there, D&G had also looked and yet we all didn’t see it. AND if it hadn’t been for M’s Pendulum and my dowsing, we would never have found it! If the pendulum hadn’t have insisted on doing its thing at the foot of her bed it would still be there now…and M would have spent another few hundred quid getting another one made.

I am so glad she got it back and really happy that in this case the dowsing worked….I dowse often, but not as often as I should. Quite annoyed at myself that in this case my head was telling me it was all a load of rot and yet my gut stuck with it and proved my head to be wrong. But we found the missing tooth…that had eluded 4 people that weekend…..detective work and hours of looking…when all it took in the end, was a pendulum and some very simple dowsing!

News on my tooth…..had it filled, one week from writing this. Still can’t eat, need to see the bloody dentist again! Wish I had a falsy!

The Interstellar experience

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Interstellar

This afternoon, I went to see the film Interstellar at the Forum Shopping centre in Funchal. I didn’t know much about the film before going in, had seen a few trailers and knew it was something I wanted to see. After spending the entire month of November at the computer writing – Irena and I had promised ourselves a day out to celebrate both our wins with NanoWrinMo, today was our day and off the cuff we decided to go watch a movie.

With a strong cast of actors, it was bound to be good. I love science fiction anyway, so knew this would be right up my street. I knew it had an Alien theme in it somewhere, so that appealed to Irena, and we shared the cinema with 4 other people.

So my overall comment for this movie – fucking fab! I LOVED it!

This film was an experience as the story starts off with Matthew McConaughey as a devoted father to his two kids and Father in law (John Lithgow) who run a farm growing corn. This is set slightly into the future when the world is undergoing climatic changes, food is hard to grow and the future of man kind is hanging in the balance. As a former NASA Pilot and the suggestion that a ghost is hinting to his 10 year old daughter, that there is something strange going on…..they discover a secret NASA project and he is recruited by a scientist (Michael Caine) to go on a mission to save mankind.

Without wanting to give spoilers I will be brief in my surmise of the plot, but the film tugs at the emotional heartstrings of a father torn between leaving his children and going on the mission. His daughter is the centre of his parental/mankind struggle and they don’t leave on good terms, this affected me throughout the film and I had a very hard time not choking on the tears I was trying to keep in, in fear of embarrassing myself in front of my pal sitting next to me!

Once in space Ann Hathaway doesn’t disappoint in this less than glamourous role. Their journey through a wormhole, landing on a planet covered in water, with a black hole nearby gravitating the oceans into huge tidal waves had me crawling up my seat at one point. Escaping that by the skin of their teeth, they end up on another planet whereby Matt Damon plays a supporting role as the lonely inhabitant of this desolate unlivable place, waiting to be saved. As the tension builds, you know its not going to turn out well for the rest of the crew and when Damon plays his dastardly card, it was Irenas turn to hide behind the sofa!

But, the whole thing was totally believable, the scientific reasoning behind the plot, the characters and the complexed situation on how to save the human race. Cleverly suggested ideas that Aliens are somehow aiding in the bid for mankind to survive, even if it’s not to be on earth and the big twist at the end that will have you talking about this film for eons! Everybit leads you back to the beginning and beyond….

The visual effects, locations and score to the movie were superb, the tension was so tight in several scenes that we were both on the edge of our seats at times, or recoiling in horror as the movie twisted and turned in drama, action and very emotional thought provoking scenes. With sitting there watching this incredible movie for just over 3 hours, I came out of the cinema having felt like I had been riding a rollercoaster and was absolutely exhausted!

It is a movie that I highly recommend and would even go as far as saying its one of the best films I have seen in years. And if you haven’t seen it yet, then go see it on the big screen, don’t wait for it to come to DVD as the cinematography really delivers and the only way to appreciate it would be to buy a ticket and go watch it for yourself.

So, I am writing a Novel…..

Today, I have been taking a break from my writing, only to be inspired by writing something here instead. My brief respite was brought on by the success of a commitment I made to myself in October and that was to participate again in the NaNoWriMo challenge which ran throughout this month (November). Hundreds of thousands of writers, authors and would be novelists from around the world converge during the month of November each year to achieve a 50,000 word target. To write a Novel in a month.

This is no easy task, some people take years to write theirs and even longer to see it in print (if they are lucky). But the experience of participating in a global challenge – and winning is incredibly rewarding. Most of us who chose this craft as a serious mission in life are incredibly good at the other craft of procrastination and I am a master at this! With 5 other Novels (and an autobiography) collecting dust as they are all unfinished, and procrastination being to blame, I decided to have another stab at Nano this year. To prove to myself that I could actually finish one of my projects…and if I could do that, then I know I can finish the others! ….or so I thought…..

Last year, I participated and got two weeks in with a 28,540 words…then the remainder of the month went out the window for personal reasons. For the rest of the year the disappointment of not reaching goal ate at me and because of the self imposed failure in myself, I couldn’t face going back to that Novel to finish it. That piece of work had a working title and was called ‘Retraction’…set in the future around a 15 year old genetically engineered perfect teenager who was about to be sent to the ‘Life Unit’ to be artificially inseminated to produce another genetically perfect human specimen. Sounds great, but of course all is not perfect in this dystopian story. I loved my concept and my plot and everything about my vision and now its been on the shelf for a year. So I have promised myself that I will revisit this project after I have finished what I am working on now.

Coming back to Nano, there are a few things I will mention in my participation last year and how my success this year was so different. Last year I was new and nobody in Madeira was participating. I made a few online friends on mainland and one in the UK, but none of these gave me a supportive companion who I could work with. Writing is a very lonely exercise as it requires hours and hours of concentration tapping at the keyboard and living in a world where you are stuck in your own private bubble. Your characters are in your head and they are real. They live and breath and speak and only you know them. Getting their points of view onto the page and making them go places your imagination has decided they should go, is not as easy as it sounds. As your characters become real to you, they somewhat dictate where your story is heading and not what you had envisioned in your earlier premise of the tale. When writing a novel, it can be frustrating as you want to get that story out and head in the direction you had it steered toward and your characters are being bloody obstinate as their personalities just won’t play ball! That aside, word count is king in November, so there is no time to sit and stare at the computer screen and have an argument with your alter ego…..you have to get something on that page and every day!

This year was different. I have a great friend called Irena who has already written a Novel (Link at the bottom of this post to her fantastic book). She was feeling uninspired to start on a new project, for reasons that were beyond her control, so I suggested that she join me in the ride through November and take part in the mammoth task of bashing out those 50,000 words. She wasn’t convinced…at first, until I gave her the hard sell! Reluctantly Irena agreed to take a look at the website and slowly she began to get interested. In October I took a look at my shelved projects and picked out the contender, deciding that my aim was to use Novembers task as a means to getting it finished. But when I read through my manuscript I was appalled at what crap I had written, so decided to pull it apart and start from scratch. Irena and I met up towards the end of October and chatted about our writing plans and ideas.

On November the 1st…the much awaited starting pistol on the website which authorised us all to start – went off with a bang and Irena and I started with the challenge. We exchanged emails through the website with our progress uploading our word counts each time we had been slaving away over our computers. We shared our woes, our moments of feeling defeated with each of us giving each other a few words of encouragement. As the word count gets entered each day, I was able to see how she was doing, how many words she was writing and when and the competitive streak in me took over. I either had to match her word count or better it, and found that every time Irena got in front of me, I would sit and bash out another passage or chapter to keep up or over take. For me, this was exactly what I needed. I had a writing buddy and a sparring partner. It was like being in a boxing ring and fighting it out to see who was getting the points…the result being, that we both won the match by completing our 50,000 word target 3 days before the end of November. We both won NanoWriMo and on the same day!

So, for me, I find I need a deadline to perform…and at the beginning of November I decided to participate in the sponsorship challenge too. I didn’t know at the time that by having Irena as a writing buddy that this would help push me through the month, so I set about telling everyone what I was up to and asked for sponsorship. In my mind if people were donating their money on my promise to finish then I would be beholden to them to get to the end. Put their money where my mouth was, and several people sponsored me privately and on the website which was also a huge boost to keep me going!

Winning Nano is such an achievement and yesterday I felt so happy that I set a goal and saw it through. And as a winner, that is the prize……achievement of reaching that goal! But it’s not over yet and that sense of achievement is slightly tainted as although I bashed out 50,000 words which is equal to a Novela, I haven’t actually finished my book! Now that the rigidity of the goal has been reached I am so worried that I still won’t finish this project as I no longer have a deadline, a writing buddy to spar with or anyone putting their money where my mouth is! This is a scary dilemma because as I told you before, I am a master at procrastination. Without carrots to dangle in front of me, I fear I will slip back into the lazy bitch mode again and be forever thinking about my story and never sitting down to write it!

It’s even harder now that I am on chapter 16 and about 3/4 of my way through the book. My characters have all reached the point where the shit has hit the fan and I now have to stitch the subplots and dramas together with the twist to get to the end. The most complicated part which I have been feeling is way beyond me to write!

I was thinking today as I am sure all writers and published novelists do every time they are ready to put their work out there, that there is a crisis of ‘is it shit’ or ‘I have just written a whole heap of crap’…and as no one has seen it yet, so you have no way of knowing whether it really is a whole heap of crap!

But one thing is for sure, whatever I have bashed out this month will need a complete overhaul and rewrite once I get to the end. Writing 50,000 words in one month is purely a rush job, a skeleton of a story whereby the growth of flesh and painting of features is needed later on to make it readable if at all marketable to the public.

So, for now I have made myself a goal, that I must get to the end of the book by Christmas….the housework can wait, and as I have no social life anyway, I might as well finish this project as intended…….will anyone like it after its finished? Who cares!

I sort of kept a blog throughout the month on the donation website and was reading through my posts this evening which inspired me to write this one. I have copied it to here as it contains my very ROUGH DRAFT of an into and excerpt of a chapter I have been working on…so don’t expect much if you read any further!

I DID IT! I AM A NANO WINNER!!!!

Update #11  •   Posted 1 day(s) ago

I did it! I actually did it! And I am so over the moon…I did it!!!!!!!!

I reached the target of 50,000 words, uploaded the manuscript to have it officially verified and now yours truly is a 2014 NaNoWriMo official winner.

Did I say, I did it? oh yes….I did it!

It’s been a bloody tough journey and a huge learning curve to do so much in a month (also chuffed that I did this 3 days before deadline)! I will be celebrating on December the first with my freind Irena who also won today…..YAY!

And you have all helped me to get there! By donating so generously and putting your money where my mouth was, you have helped to give me that shove to keep going. So a huge thank you for being as big a part of this experience.

BUT and this is the sad part….my book isn’t finished😦 I am up to chapter 16 and in reality only 3/4 of the way there. And now I have reached this goal I need a new one to see it to the end!

Anyway, thanks again everyone for all your support…..if you would like to read any of it, let me know.

41,029 words in and 8 days left!

Update #10  •   Posted 6 day(s) ago

Can’t wait to get to the end of November and get a life!

Word total update: 32,174

Update #9  •   Posted 9 day(s) ago

So, after an afternoon of some graft and having just updated my word count to the NANO website, I decided to give you all another progress report. It occurred to me that with this Nano word goal, anyone who isn’t participating will probably have no idea what it means or rather what it actually looks like! So to give you a rough idea and also to PROVE that I am actually writing something (and not fictitiously plucking numbers out of the air)…I took a photo!

Below is my manuscript, which holds to date 32,174 words, which is at present 92 A4 pages long in single space, courior font, pica 12.

I bet you are all wondering if by reaching my target of 50,000 words means, is that where I finish my book? Well, it doesn’t have to be…….I might get to the end of the story in the 50,000 word race, but that is because I am working on the skeleton, the idea behind it. Most Novels run from around 80,000 to 120,000 words (A Novella is around 50,000). I might get beyond the 50,000 if my idea takes me further, but its the word count that matters, not the end of the story. But this is the start. Once the bare bones of the story is laid out (or skeleton or foundation – whichever phrase to help you understand the concept)  then I have something to work with. At this point it still isn’t really ready to be read by anyone (hence my lack of snippets for you all to read) as this is a first or rough draft. This will need several rewrites to fine tune it, flesh it out, add depth and iron out all the plot holes and foibles with the dialogue etc

What happens after that I can hear you asking……..not much really. A few people might offer to read the whole thing and then give me some feedback. If it’s good feedback, I might look at getting a proffessional Editor to give it the once over and their opinion as to whether it would be a viable project to market. Finding an agent is the norm, but these days it’s difficult to find someone who will take on an unknown. There is always the self publishing route and I might explore that avenue.

I can also hear you asking…then why are you bothering?  And the answer is simple, I love to write! But also, I have started about 5 different Novels and all are unfinished! Last year I failed nanowrimo and this year I am determnined to not only finish it and win but to also finish one of my Novels as I know that once I have got the first one done and dusted, I will have the motivation to finish the others!

A week since I updated! I have passed the half way point!

Update #8  •   Posted 11 day(s) ago

I can’t beleive a whole week has passed, not sure where the time has gone, but I have at least reached the half way point and there is no return! My word count now stands at 26,037 and 13 days left to write the other 23,963 to reach goal!

It’s a hard road, writing in a short time frame as one has to force oneself to get the work done even when not inspired. And inspiration is not the only problem, motivation is even harder when the creative juices just don’t want to flow. However, I have learnt something from this, and by sitting down in front of the computer and forcing myself to write something, no matter how crappy it reads, once the words start to fill the page, the inspiration starts to flow as quickly as the words do.

I am not a habitual person, so I find that setting aside a time each day to write for me doesn’t work, I am fantastic at procrastinating and thinking about the story line..I can live, eat and breath it, but the hardest part is sitting down and getting onto the computer. If only I could USB my brain directly into it and churn out those thoughts and ideas onto the pages wthout actually writing them, if I could do that I would have enough material for 10 books!

So, I bet you are wondering where my story is at? Would you all like a few sneaks and excerpts of it? Let me know and I will post a few..meantime I am off to go and kill one of my characters off….

14,531 words in!

Update #7  •   Posted 19 day(s) ago

I need to step up the word count as it’s fallen a little low on the target daily count to reach the full 50,000. I am living eating a breathing my chracters and the story line at the moment but having difficulty knowing where to slot the extra plots in that snuck into the story! As you write these things, its all very well having a plan and working out your story line before you start, the problem is that your characters evolve as you write them and so does more of the back story!

Anyhow, thought you all may like a little exerpt bearing in mind its a very very rough draft and spellings, descriptions and all the foibles will get ironed out later on as at the moment the deal is to bach out the bear bones and get to the end, then flesh it out later.

From Chapter 2

Skye had never been on a cruise ship and she wasn’t exactly over the moon when Jeffery had given her a ticket. Her growing resentment toward him through out her home imprisonment didn’t dissipate. Even when he announced that she was Virus free and she was being packed off on a cruise. They had argued about it extensively. She demanding to stay at home, he ordering her to take the trip. He tried to explain, that Sean had organized it for her, before he died. He had implemented the plan so that his wife could be one of the few that could get off land for a while and away from danger.

This was not a holiday he explained, but a voyage at sea, away from the risks of contracting the deadly virus that was reaping the land. Only healthy people were allowed on board and had the means to buy into the expensive floating quarantine. He told her that she was an ungrateful bitch for being so obtuse about the idea and this just sickened her more. Still grieving and being in the same room as the man who had delivered the news in a way a dentist would tell a child that he needed to pull a tooth and without aneasthetic……Seans brother was an emotionless prick.

Whilst being hauled up in her home for three weeks, enduring bland food parcels left on the doorstep and no company but for the depressing news on the television, Skye thought she would go mad. A trip outside was all she craved for, or to at least talk face to face with the house police other than through the window. She did not look forward to Jeffery’s visits that made her feel dirty every time he stepped over her threshold in one of those rediculous suits.

“You can take that ticket and shove it where the sun don’t shine!” She had screamed at him countless times, but all she got back was..

“Yes, you could but my arse isn’t allowed on the boat, yours is”.

“This isn’t fair, sean should be coming on the cruise with me!” Was another one of her rants, and his response was cold and cutting.

“Well he can’t…he’s dead”.

Eventually she ran out of steam as clearly Jeffery wasn’t going to leave until she had packed her bags and would get into the ambulance waiting outside the door. Skye begrudgingly grabbed a suitcase from under the stairs and retreated to her room, she sat on the bed looking at the empty receptacle and could hear Jeffery impatiently pacing the room below. Without giving any thought to what should go in it, she dumped a few draws onto the bed and threw whatever took her fancy into the case, the wardrobe she treated with the same fashion. Once she had it zipped up, she grabbed the photo of Sean from her bedside table and tucked it into her handbag. Skye sat on the bed again ignoring Jeffery’s calls to hurry up from the bottom of the stairs and opened her mobile phone. Once again dialing the number of her mother, but clasped it shut again when she heard the same monotonous tone that wouldn’t connect her as it hadn’t hundreds of times before.

As she descended the stairs Jeffery was standing with two men in PPE suits who man handled  her roughly out the door and swiftly into the ambulance. As he went to shut her in, he stood for a moment, his brown eyes devouring hers,and said. “You know something Skye? You are one lucky bitch to be going where you are going. So many more people, more worthy than you should be on that ship. I only hope that you don’t waste your time wallowing in your misery. Sean is turning in his grave for sure seeing you resist this golden ticket and chance to have a better life when others can’t!”

As she retreated into the seat, she was angry at the way he had insulted her. If he hadn’t have closed that door so quickly she would have slapped him. But once she calmed down the words he said began to play on her mind. What did he mean by the chance to have a better life when others can’t. She was now filled with dread at the prospect of being shipped off to some far and distant land that she didn’t want to go and kicked herself for not asking him where the cruise was going. Now shut inside the speeding vehicle with no reason lefts to keep her life where it was, she sat back, closed her eyes and prayed for the first time in her life. If God existed, she reasoned, then it wouldn’t hurt to ask. As her subconscious drifted to the sway of the vehicle her, all hopes of ever speaking to her mother again were slowly fading but the fear of the unknown was more intense. She reached the point where she didn’t care now and sat looking at the empty bed in front of her wishing she was in it and off to the morgue.

Day 4..and on target!

Update #6  •   Posted 25 day(s) ago

I am 8441 words in!

I started..as promised! Intro or Forward to my Novel

Update #5  •   Posted 28 day(s) ago

Please bear in mind this is 1st draft!!!!!!!!!!

In late 2013, a small child in Guinea fell ill. This is nothing new for a rural and remote village situated deep in the countryside. Modern doctors and medical supplies are scarce and naturally the mother did her best under the circumstances. It wasn’t until she and another close relative died,their deaths were painful and horrific. Word started to spread, almost at the same rate as the virus.

It is believed that a Fruit Bat was responsible for the outbreak. A small creature that was often a source of food for the tribal influences in that area. It just took one animal and contact with a human being to pass it on. Poor hygiene and food preparation on this single occasion ultimately led to a global threat.

Once the bongo drums had thumped their way around the country, weeks had passed and clusters of the virus had spread into other villages and small towns. Bodies were given quick burials, but those who came into contact with them, succumbed to the deadly pathogen themselves.

By the time WHO (The World Health Organisation) intervened, small outbreaks had begun popping up in Sierra Lione, Libeira, Nigeria and Senegal.By mid 2014 the virus had reached the USA, Canada, Australia and Norway. Ebola had broken the African borders, something that had never happened before and had now been unleashed to reap havoc with other parts of the world.

For a pathogen that has a very quick function by killing it’s host within days, Ebola theoretically should have been kept under control and eradicated as quickly as it took hold. And it would have, had it not had the chance to mutate under different conditions by arriving with an infected host to new climates and with that, new sources of flesh to devour. At fist sign it is easily brushed off as the common cold or onset of influenza, but by that time it is too late as after the fever, it attacks the internal organs that shut down and melt into a rotten mush. Anyone who has come into contact with any type of fluid that is expelled from the infected, becomes infected themselves. And families who have not suspected that a loved one is in the early stages of it are at most risk. This started in guinea, with that child and its mother. Now the world is exposed.

At the end of 2014, after governments had debated the subject until exhaustion and the public had stopped listening as nothing new emerged, it seemed to go quiet. Ebola looked to be under control again, but the odd case here and there would pop up every so often, that would mildly regain their interest. Screening and controls at airports and Ports were still in force and everyone found it a nuisance to travel. After the relaxed situation and lack of information on the news and social media, everyone around the World was shocked when a global announcement was circumvented across the Media and everyone who had a television, tablet or mobile phone was alerted to the next installment of the now Ebola crisis. In June 2015 the truth was unleashed. The Ebola virus had mutated and was now airborne. It was revealed that the virus had gone dormant over the months before the last publicized outbreak and that scientists had been rallying to find a cure. After it had reached other shores in mid 2014 and efforts were made to contain it, it appeared that the virus had no plans to leave.

Vaccines released too early and without FDA approval, were rushed into the medical systems across the globe which forced the virus into survival mode. Not only could it now be passed on by being in immediate contact with someone else who was breathing the same air, it could also use its host to carry it without the host even knowing. Screening everybody that breathed, to see if they were carriers or not was of an enormous magnitude and governments squabbled about how to implement it. Everyone argued that their resources could not cope with the demand and so a global alliance of campaign was implemented.

On 31st December 2016 all air travel was suspended between countries. Ports and borders were closed.And the world went into a panic. Life and the way everyone had lived it, was suspended. Each country now had to fend for itself. Guinea was free of Ebola.

Nano has begun..and so have I!

Update #4  •   Posted 29 day(s) ago

Here’s to the start…..wish me luck!

Synopsis of the book

Update #3  •   Posted 37 day(s) ago

Fast forward to five years from now, the Ebola Virus has now become airborne and is mutating faster than scientists can cope. Quarantine institutions are as large as major cities and the world is in a mess. There is one small corner of the world where the virus hasn’t reached, a small remote island stuck out in the middle of the Atlantic Ocean. As the Epidemic rampages around the Globe, with communication reserved for military and government, the island and its inhabitants soon became a forgotten race. Angela has survived for two years. One of a few foreigners who didn’t race back home to be with their family or when the expulsion of the elderly, infirm and ill were packed off to the mainland. But the self sufficient island is soon in jeopardy when a cruise liner packed with rich and seemingly healthy haven seekers tries to dock in need of supplies. When Angela learns that her widowed daughter is on board, she must find away to sneak her off the ship so that they can be together again. But at what cost? Could her own daughter be a carrier of the deadly pathogen, and if so, will Angela unwittingly unleash the deadly virus on her neighbours? With so much at risk, and with nowhere else to run and hide – what would you do if it was your flesh and blood?

But there is more to the cruise ship and it’s passengers than just stopping for supplies. As news spreads of the occupants aboard the liner it seems that everyone left on the island has a relative onboard. A flurry of panic and elation, then subordination toward the powers who run the island manifest, as everyone wants the ship and its cargo to stay. No one is asking why this particular cruise liner is filled with the families of the inhabitants nor do they care. At the risk of losing her own daughter, Angela must find out why, how and who sent them and before they are allowed to disembark to rejoin their families and risk the only few remaining people in the world free from extinction. As she delves into the mystery of why, Angela uncovers an unthinkable plot of governments coercing to cull the worlds population and the startling possibility that the virus was planned as a means of control. And what about her daughter and the boat load of long lost relatives?

Angela must find away to save her island from contamination, whilst searching for the truth…..But the passengers aboard the cruise liner hold more secrets than she can imagine and her daughter is the key.

The book I am working on!

Update #2  •   Posted 38 day(s) ago

I have just launched my page to get sponsorship for Nanowrimo – test LOL

Update #1  •   Posted 38 day(s) ago

Link to Irena’s Novel

A Sweet little tour of M&M

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Yesterday I had the pleasure of taking a tour of a local sweet and biscuit factory, that was organised my friend Tobi. A short drive across Funchal and into the area of Sao Roque, the factory is well hidden in a residential road, fronted by a typical coffee shop. As we arrived, we were unsure that we were in the right place, for something that produces a large amount of candy, cakes and biscuit products on the island, the building looked very small.

Jorge, the owner and proprietor of Martins and Martins LDA  warmly greeted us and ushered us inside ready for the tour. The factory was buzzing with activity and it felt like we had stepped into a tardis. The delicious smells of sugary edibles and mouthwatering aromas of freshly baked biscuits pervaded every corner of the place, packers were packing and machines were whirring as several different products were being prepared at the same time.

biscuit packers

 

cidra

 

Our first question was raised as we looked at the fruit that was being crystallized in steel basins (as the picture shows above). A sweet zesty scent that no one recognised as well as the large size of pre-stone pitted fruits had us all guessing what they were. Locally sourced from the North of the island, these dried chunks of Cidra are used to adorn the infamous Kings cakes that are sold throughout the Christmas season. We were offered samples to taste, which was really quite delicious!

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cake mixer

 

Next stop was the mixing area. Yesterday they were baking biscuits and we were able to watch the process and sample some of the finished baked products.

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Once the mixture has been made, it is emptied into a basin at the top of the machine, where trays are filled with small dollops of the biscuit mixture.

tray dollopsThe trays are then loaded into an oven and then returned to racks to cool.

cooked biscuits

 

gold biscuitsJorge Martins is the director of the family run company which was started by his father in 1982. Some of the staff have worked for him for over 20 years and the atmosphere was of a happy family orientated work space.  M&M LDA use locally sourced ingredients. Their honey comes from a Hive in Calheta, their fruits from the North of the island, and other ingredients from local suppliers. Their range of products supplies the supermarket chain Continente, local stores and cruise ships when they come into Port. They also export to the UK and Switzerland and are looking to expand their market in that direction.

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The company also make the famous Madeira Cake (Bolo do Mel) which is similar to a moist British Christmas cake and not the fluffy sponge that is sold in the UK under the same name. We didn’t manage to see the sweets being made that day but have promised a return trip in January when they will show us they are made.

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Taking to the Seas on board the MSC Preziosa

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The newest addition to the Italian Cruise fleet, MSC Preziosa arrived in Madeira yesterday on its Maiden Voyage. It stopped in Port for the day before sailing off onto the next leg of the journey, six days at sea before it will arrive in Brazil.

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I had the opportunity to be invited again, by MSC to see the insides of the massive liner, and accompanied by my author friend Irena, we set off early on a Sunday morning in the pouring rain to board the ship.

Seeing the Cruise liner up close is literally quite breathtaking as it is simply enormous. As most people can only see the sleek and shiny new ship from the coast, sitting majestically in the port, its size is lost against the back drop of the Marina and pontinha.  Preziosa is a monster and equals its sister, MSC Davina!

Once our passports were swapped for guest boarding passes we were escorted to the Top Sail Lounge where we were treated to a glass of bubbly and caviar canapes. After a short speech from the Captain and a few gifts and prizes were handed out to the good folks from the tourism board, port and companies that deal with the cruise liners in Madeira, we were split into small groups and given a tour of the ship.

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This five star luxury liner is a sumptuously appetising way to travel. A floating hotel with every convenience and comfort packed into the decks, so that the 3,502 passengers can utilise the facilities onboard in style. 14 of the 18 deck ship are for guest use, with 17 elevators to connect them.

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The MSC Preziosa is the 12th ship in the MSC Cruises fleet and the fourth and final addition to the Fantasy class. Each of the 18 decks are named after precious stones, it holds a 1,600 seat theatre, Casino and several water parks and pools. This ship is equipped with the largest waterslide in the fleet which stands at 12 ft high.

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There is no shortage of restaurants from fine dining, to self service and snacks, bars, nightclub, a spa and gymnasium. Kids of all ages can be entertained with a 4D cinema, F1 simulator, video machines, play area and a water playground.

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At the end of our tour we were served a delicious lunch, chosen from their Italian menu and even managed to sample their mouth watering home made ice cream! But despite the hours we spent on board with the tour we probably only saw 1/10th of the vessel itself.  And as it was destined to leave our island for a 6 day adventure at sea, on its voyage to Brazil, I couldn’t help feel a teeny bit jealous as the passengers going there, who could enjoy so many features of the ship during their time at sea.

Some technical information for the Cruise enthusiast:
Gross registered tonnage = 139,400 tons
Length = 333,30 mt
Height = 67,69 mt
Maximum speed = 24,05 knots
Passenger capacity = 3,502
Total Cabins = 1.751
Decks = 18
Environmental technology = AWT Advanced water treatment, enerysaving and monitoring system

http://www.msccruises.com 

Is Madeira just a quiet place to relax? Definitely not, when you can take to the skies and see it from a birds eye view!

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Is Madeira just a quiet place to relax? Definitely not, when you can take to the skies and see it from a birds eye view!


In the first of a series of articles…inspired by an 18 day stream of visitors (family and friends)….I discovered the lost sense of what Madeira is all about. As someone who lives here, we take it for granted. When family and friends come over to visit, the car gets a much needed run and I become a tourist again, along with my companions.

At first, the decision of what is on the (long) list of the MUST see……to someone who has never been here before it is simply EVERYTHING…..in my case with family, it is what did you enjoy last time and want to do again?

My last batch of visitors were my parents and youngest sister who came over from the States….my daughter and future son in law who came over from Scotland. So the first ports of call, were the trips down memory lane, when the kids were all younger. Trips to bars and eateries took up the first few days, then my daughter and sister wanted to get extreme and relive their Paragliding experiences.

So, in this first batch of articles on what to do in Madeira, I will take you down the path of what is considered an ‘extreme sport’ and a very popular thrill for all ages…who wants to whiz down a mountain in a wicker basket when you can fly with the birds and see the island and all its glory from above, with a sheet of nylon and the wind to experience some spectacular scenery!

Not content in letting my tribe have all the fun, I indulged in it myself this week. My second flight and definately not my last!

Paragliding is a sport that has become very popular in the last few years. Hartmut Peters operates ‘Madeira Paragliding’ from Arco da Calheta and is one of a few liscenced pilots who can take passengers (tandem flights). He arrived on the island around the same time as me and his business has grown over the years, as more ‘younger’ visitors seek out new ways to see the island! Madeira has become a favourite destination for proffessional and competition pilots, due to its mini micro climates and fantastic scenery. Flying in Madeira is a challenge, as well as fun and because our weather is good all year round, those guys in the biz get a lot of flying time when they visit!


My daughter was the first out of us to go. She did this 2 years ago with her fiance and pleaded with me to arrange it for their visit last week. The weather was over cast on land and blue clear skies out to sea. A few days before there had been a back wind, so we had to wait for that cloudy day…perfect for good thermals.

This year promised a top landing, which meant touch down on take off. Hartmut’s takeoff site is situated not far from the Miradouro and restaurant Costa Verde on the highest point of Arco…..standing on the takeoff offers spectacular views of the plateau of Paul de Serra from the rear and Calheta and the Marina over the edge.

Most people who do not know anything of the sport and cringe at the thought of doing it, have the idea that one has to jump off a cliff, and although the take off looks pretty edgy, with a cliff drop to turn any person’s stomach with a fear of heights….it simply isn’t like that. Safety is always top priority and Hartmut simply won’t fly if the weather is not right……taking off is a very gently experience. A little bit of running to start with until your feet are running without ground to run on…..one is already up in the air before the edge of the cliff takes your feet from you!

Once in the air, the scenery from a birds eye view immediately takes away any fears or worries about flying. Personally – I did a small reality check in my head when I flew on Monday, as I sat in the harness with my legs dangling over the landscape, attached to Hartmut by two sturdy clips and a network of pretty colourfull but skimpy strings that attached us to the wing that held only air to keep us up in the sky. To feel the vibrations as we hit a thermal whilst we circled in it to gain height and my eyes feasting on the spectacular landscape below. The vibrations along with the wind noises is quite comforting, although not peaceful….. hanging there, above the rest of the world, most certainly is!

Hartmut, forever the joker, is definately not to be taken seriously when he calls you a victim before take off, or says ‘shall we land here’ when he glides towards to a steep cliff edge or ‘shall I drop you off here?’ When you are gliding over the restaurant……usually a landing is at Madelena do Mar…where he can guide the wing/canopy/glider onto a small stretch of beach, with wind socks and flat ground. Top landing is great too as it is grass and in my case was a fast BUTT skid through a few young trees which just added to th thrill of the flight. Last year he landed on Calheta beach with my daughter onto the sand, with an audience of bathers …which is all good for business.

This year she had a top landing and as you can see by the picture, a very happy lass! Hartmut on the other hand looked quite tired as he had been flying passengers before we had descended on him. I wanted to wait for my flight till after the weekend and coincide it with my sisters second flight of the trip at sunset….something special, and it was. That day was very cloudy and the mist descended over arco in an eery version of ‘The Fog’. We feared that she wouldn’t fly after me, but being the daredevil they both are…took off and lived for the moment. The plus side was that the landing was going to be at the drinking hole we all favour this year…a small private area of beach at Anjos and a cool bar called The Zion Project. After they took off, we raced down the hill to meet them at the other end with a round or two of beers and a few caiperinhas to celebrate at the end!

If you are interested in taking a flight and having the experience of a life time, message me here and I can arrange it for you. it costs 75 euros for a tandem flight with Hartmut. For more info email me at sammy@themadeiratimes.com