Still on that boat…

Strawberry blonde in a dizzy world!

One week to go!

August21

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I think the word that best sums up the last five weeks would be HORRENDOUS! The first two weeks I was pretty much bed bound, the next two sofa bound. The vertigo was so bad even laying still in bed was like being on ship being thrown around in the sea- far from fun!

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I had a telephone consultation with my Dr and he felt it could be a good thing that my symptoms are so bad. It could be a thing called a Herx reaction. This is when the antibiotics kill off so much of the bugs that your system can’t clear them quickly enough, they then build up and heighten your symptoms. Of course, this could all be a red herring and it’s actually the antibiotics taking their toll as I’ve been on quite a concoction.

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I also went to see a Neurologist who told be Chronic Lyme doesn’t exist (never write that on a Chronic Lyme forum – I think he’d be getting death threats if I’d let slip his name!), I just need Rehab and I’m out of condition. I did point out I’ve had lots of rehab before and it has never had a positive effect. To me, that doesn’t explain how I’m so episodic. One day I can manage things and the next I can’t. Unconditioned – I’d like to see him try and beat me in the pool!!

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I’ve managed to get out of the house for the last few days but I’m not managing anything too exciting as I’m still feeling rough. It’s like I’m constantly hung-over, which is unfortunate as I’ve not had a drink in weeks. I’m also hardly sleeping which isn’t really helping matters.

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I go to Sardinia next week which is quite worrying (airport!) but it has also been a great goal to aim for! I have been doing lots of healthy gluten free cooking so I definitely deserve a pizza (or two) and the occasional (very large) GnT 😉

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I so hope that this will be worth it!

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3 Comments to

“One week to go!”

  1. Avatar August 21st, 2015 at 10:33 pm Snowy Says:

    It’ll be great! You’ll have a lovely time and you deserve it more than anyone!!
  2. Avatar August 23rd, 2015 at 9:00 am Susan Cartwright Says:

    Thanks Reuben xx
  3. Avatar August 23rd, 2015 at 10:48 am Jan (A gluttonous wife) Says:

    Well that’s just poo and I’d love to get my hands on that neurologist – I bet he said that in his highly intelligent-no-bedside-manner-holier-than-thou voice too. Insert swear words 🙂 I just love your attitude given everything Suse – that hungover feeling even when you haven’t had a drink is tiring day after day – feeling your pain honey – have the best time and have a GnT for me lovely xxxx

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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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