Saturday, 12 July 2014

Wow!  Realised it had been a year since my last update!  So, without further ado <cue drumroll> here it is!

Well I tried.   But in about Feb/March I finally threw in the towel on the private treatment.  I was, in actual fact, starting to feel worse and also getting skin problems etc through the use of antibiotics for such a long time!  Thankfully those resolved once I stopped taking them.   Do I feel any better?  No.  Do I feel worse?  Well yes and no.  It is probably just a natural progression of the disease anyway but I have slowed down even more and had to move onto strong painkillers, Tramadol.  What?  OMG!  I hear you cry!  They are addictive.  Yes, yes, I knows that but....... do remember that one of my symptoms is a poor memory?  I am meant to take 6 - 8 of these per day in 3 - 4 separate doses?  I am lucky if I remember to take one dose and only take the second one because pain reminds me to!   So errmmm yeah.... I would not even make a good addict would I huh?

I am instead concentrating on making life as comfy as possible, doing what I can to feel as good as I can.   I appreciate the simple pleasures in life now.  To you, that might be smoking, going out for the occasional meal, taking regular holidays to nice places and drinking socially etc.  For me, my simple pleasures are things like watching the birds feeding, raising and releasing butterflies and keeping up with friends and happenings via the internet.  I am lucky in that I have a nice Macbook Pro laptop now so I can sit in a comfortable chair which reclines if I need it to, with the Mac on a table and all my stuff to hand like a drink (water or pop!) and stuff like moisturiser cream a pleasant spritz spray to freshen up with.   Last year we had a walk in shower put in instead of the bath as I was having difficulty getting in and out, so that made life easier.  Your favourite gadget may be an iPhone or  similar - mine is a machine to rest my feet on that sends electrical pulses through my feet to shift the fluid build up! :-D

I have actually come to terms with the fact now that a) I may never be diagnosed properly and b) I may never be cured.  A cure is very hard to find - some people may feel as though they have recovered but many find they relapse again later as unless every damn, sodding borrellia spirochete is ousted from your body, it WILL return!   This is a very insidious organism that invades every system of the body.  It bores into muscles, organs, bones etc and is known to retreat into cyst form to 'hide' when you try to treat it!   Believe me, if you got this, you would soon realise why you have to become your own expert on it because the medical profession just are not paying enough attention!  The info and research is out there, but it is being hidden and ignored.  Nobody wants to know and those who do, end up being hounded by the GMC or CDC (US) until they either quit or lose their license to practice!  I kid you not!  Conspiracy theory?  Yessums!  In spades!  Go look it up sometime.

According to the ill informed media and even less well informed medical body in America, IDSA, none of whose members are experienced in Lyme Disease though they think they are, this disease is 'hard to catch, easy to cure.'   I assure you that is the wrong way round!   Easy to catch and hard to cure is more like it as every well researched scientist who has studied it can tell you!

So no world.  I am not leaving you any time soon.  I am here to stay though it is a sobering thought that the second most common reason for a Lyme Disease sufferer (second to associated heart problems as the main reason) to meet an early death is suicide, usually through utter despair at lack of a cure, tired of the pain and limitations and their families and friends have either disappeared or given up on them.  I am very lucky to have a few supportive family members and loyal friends so no. :P  Shan't be going anywhere, at least not by my own hand!   Besides, I would miss too much!

As for quack cures.  Keep them!   I do not fall for flower remedies, herbal wonders or magical talking therapies.  Neither do my guys, the Lyme Disease bacteria.    They thumb their noses at such things!

So, there you go.  Another update!  Aren't you the lucky ones?!

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