Still on that boat…

Strawberry blonde in a dizzy world!

Off to see the wizard the wonderful wizard of Washington DC!

February20

Yes not that catchy really, can’t see that taking off!

It was hard going trip. On the positive on the way out the plane had hardly any people on it so we were spoilt by the cabin crew. On the negative I got a migraine. On the positive we got through security and out of the airport in record time. On the negative the hotel we had only chosen because it had a bar and a pool – well both were closed. On the positive there was a health food shop opposite with a bar in it – only in America!

The clinic seemed to think I was doing well (hard to comprehend when you’ve been in bed/on sofa for six months, just had a migraine and had been in a wheelchair the day before) so they are reducing my protocol and hopefully my own immune system will kick in and take up the slack. They seemed pretty positive so I guess I have to go along with their plan and trust in their wealth of experience. My GP and I both think I’m deteriorating (I am – that’s a fact) and that my body is not coping with the drugs so he wanted less drugs to be taken too. So on the one hand I’m reducing drugs because I’m getting better versus the other hand where I’m reducing the drugs as I’m getting worse and need a break if that makes sense? I really hope that the clinic is right and prove my GP and I wrong.

I have been told to be more glass half full about this but anyone who has followed my blog for any length of time will know I’ve been at this kind of point hundreds (mini exaggeration) of times before and each time I get let down it’s taking me longer and longer to pick myself up again. I certainly need more brains (what’s left of mine needs an upgrade!), more courage to continue on with this never ending battle, more heart to stop the jealousy and ‘why me?’ that I just can’t shake off and that my doctor isn’t just a ventriloquist – it’s ok he never brings in a puppet!

I started the new reduced protocol (looks like it – practically needed a suitcase to take away my drugs from the pharmacy!) yesterday so please God let them be right – I really badly want to believe them.

So at the end of the consultation I wish I could have just tapped my heals together and been in my own bed. There is no place like home, there is no place like home – especially when you feel rubbish 🙂

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3 Comments to

“Off to see the wizard the wonderful wizard of Washington DC!”

  1. Avatar March 25th, 2018 at 4:49 pm Snowy Says:

    I so wish you had some of those magic red shoes Sues. 🙁


  2. Avatar March 26th, 2018 at 2:20 pm Susan Cartwright Says:

    Me too! Size five please 🙂


  3. Avatar April 3rd, 2018 at 8:20 pm Emma Says:

    How are you doing Sues? X


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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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