Still on that boat…

Strawberry blonde in a dizzy world!

Day 25

November16

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Day 25 will now be known as official melt down day. I went to the surgery for blood tests and an ECG as I’m on so many ‘fun drugs’ I need to be monitored. I had to go to another surgery to have the ECG to be told by a dragon of a receptionist that they couldn’t do it even though I’ve been booked in for weeks. I didn’t even get an apology. Where do they get these people, they sit on a desk in a doctors reception and they feel they have absorbed all those years of medical knowledge by just being in the same flippin building?!? She had absolutely no clue what she was talking about and was about as empathetic as a wet tea towel. Being told I should just pop to A&E if I think I really need it but I’ll be waiting a long time pushed me right over the edge – I cant pop anywhere!

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So I had a melt down. It wasn’t so much her pretending to know what she was talking about, it was the clear lack of understanding that it had taken so much effort for me to get there. I have to say the nurse was really great, she said she could completely see my frustration and could have quite happily of joined in with me. Anyway, needless to say I spent the remainder of the day on the sofa.

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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 😉

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