Still on that boat…

Strawberry blonde in a dizzy world!



This is a lovely poem by Australian Lyme Patient Karen Smith. I came across it (I think I was Googling ‘Can Coconut Oil Cure Lyme?’ or something else equally as daft) and felt I should share it to help spread awareness. This lady has done just that for people in Australia where the diagnosis and treatment of Lyme is even more of a battle than it is in the UK. It is very simple but brought a tear to my eye:



Invisible is really not all it’s cracked up to be

It is dark and painful, lonely and bleak

It is the realisation that you must constantly fight

If there is any chance to be reunited with the light


Invisible is the desire

To live without pain and to return to a normal life

To be able to work, drive, listen to music or dance

Where the simple act of catching up with friends

Doesn’t come with the ‘pay back’ of a few days in bed

It is the dreams to participate once again in life, to live to the fullest, not simply exist


Invisible is the longing

For the understanding of family and friends

To know that they truly remember who we were before illness

That they believe that we are doing our very best to return to that life

To know that we are still loved and respected for the people we have always been

And not judged by the illness that has consumed our body


Invisible is the despair

That one day you will not keep finding a reason, or the strength to continue on

It is the midnight tears and the questioning of ‘who am I now?’

It is wondering will this pain ever end, will these voices ever cease

And will I ever find ‘ME’ again


Invisible is the cloak we wear

The smile on our face and our light hearted jokes

Are veils and armour that hide the pain and heartache

Look into our eyes and you will see

Invisible is a place you don’t ever want to be


Help us bring invisible into the light

So that no others have to suffer and fight

Tell our stories, believe our plight

Stand up with us and say, enough of the suffering this just isn’t right


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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉