Still on that boat…

Strawberry blonde in a dizzy world!

Trapped

January20

dizziness[2]

What an optimistic fool I am. After posting the previous entry my mum picked me up in her car to go to her house for a change of scene. I felt like the house was tipping as soon as I had got in the door and I hung on to the dresser for dear life. Even with my Mum and her partner next to me I still collapsed. It’s like my body totally gives up and I have absolutely no control over it. I then spent ages on the floor (with Molly the dog) letting the rocking sensation calm down, hanging onto the floor for dear life. It took me about an hour and a half to get from the floor to sitting to crawling onto the sofa.

prison-01[1]

So, even after managing to tick off pretty much everything on my detox list yesterday (and I do most days) my brain still isn’t happy. I am totally gutted, I feel like a prisoner in my own home. I have been crawling around on my hands and knees with my phone glued to my side as it could happen to me at any time. I’ve had a few times when I thought I was going to have an ‘episode’ today but so far so good. It’s so scary as it’s so unpredictable, you don’t exactly want to be on the floor of Tescos unable to get up. It would be terrible – being passed out on the floor next to the doughnuts for two hours on my diet!

IMG_0432

So, I’m not really in the mood for TV so the DVD is still safe and awaiting me on the floor which could be anytime soon 🙁

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2 Comments to

“Trapped”

  1. Avatar January 21st, 2017 at 5:16 pm Amanda Says:

    Hi there
    Just found your blog. Do you have a new diagnosis of lymes – Id always suspected this but have been told mav. Finding it really difficult and it’s rendered me pathetic emotionally.
    Where are you based? I’m in the UK in Kent, was wondering if you had a London spealist.
    Any info would be gravely appreciated.

    Thanks

    Amanda
  2. Avatar January 22nd, 2017 at 12:39 pm Susan Cartwright Says:

    Hiya, thanks for getting in touch. I was never convinced of my diagnosis of mav as I never found any improvement with treatment. I went to my GP who tested me and I came back with a positive blood test but this test is not 100% accurate. I then went to the London School of Tropical Medicine but I found that they were very much on the fence about chronic Lyme but did offer me treatment. There is a really good group on Facebook called ‘Lyme disease uk discussion group’. They have compiled a document that lists all of the options that are available With really helpful patient reviews. I understand how hard it is with a chronic illness and I really hope that this has helped you. You take care 🙂

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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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