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!