Still on that boat…

Strawberry blonde in a dizzy world!

Things I must be reminded of when it gets rocky!

June14

 

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Still loving America as I’ve been doing really well on the pre-treatment protocol which has been a lot of drugs to try and calm my mental brain down.  I took advantage of this good patch to go on a proper holiday (Washington was just an ordeal!) before I start the more gruelling antibiotic regime – I’ve had to make a spread sheet just to stay on top of things.

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It was great to go away and feel so much better. Admittedly the weather for the first few days was rubbish. It was so grim the pool bar had a log burner going for the first three days. We were wearing our warm ‘England clothes’ that we travelled in for days trying to keep warm! Still managed to have fun though.

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Things brightened up and I even took a bus without being totally terrified for the first time in 6 years! That sounds like such a simple thing to do but I’d previously worry about an ‘episode’ or how far I’d have to walk the other end, passing out etc etc etc – quite valid reasons to be concerned!

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After a few practice runs of walking to the beach I managed to get up really early in the morning and walk to the beach and do my yoga practice on a beautiful empty beach – it was amazing!

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I also went to a stunning  church, I’m not religious but I was really drawn to it. I lit a candle and made a wish that everyone that I care about live a happy and healthy life.

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On my return I didn’t crash like usual. I even managed to walk across the fields to a local pub. Something I’ve always wanted to do and used to sit and cry about with my mum as I thought I’d never would again. So simple but a massive deal to me. I can’t tell you the relief I felt when I actually got there – I sat and had a big cry and a big drink!

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Just hope the antibiotic protocol doesn’t rock the boat too much (excuse the pun). I’m expecting a set back but hey, at least I know I can do these things, my brain isn’t damaged beyond repair. I just have to remember what I have managed in the three weeks prior to the antibiotics and not get too disheartened if things deteriorate 🙂

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Cheers – no more drink for me for a while!

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3 Comments to

“Things I must be reminded of when it gets rocky!”

  1. Avatar July 22nd, 2016 at 9:11 pm Emma Says:

    How are you getting on now Sues? Hope all going well X
  2. Avatar September 2nd, 2016 at 5:31 pm Susan Cartwright Says:

    Sorry Emma been so up and down wanted to wait for a middling mood before I wrote a new entry! I hope that you are well? sues xx
  3. Avatar September 3rd, 2016 at 6:07 am Emma Says:

    All good here thanks. Still feeling better? There’s so much in the media about Lyme’s recently! More people talking about it has got to be a good thing hopefully 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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