Still on that boat…

Strawberry blonde in a dizzy world!

Rollercoaster or what!?!

September5

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Sorry for the comms down. Things have been all over the place with both my physical and emotional health (I have been a bit cray cray) and I wanted to give a true reflection of how things have been. My sister (who lives in Australia) got married and the pre wedding stress, the actual wedding stress, and post wedding stress was immence and would have sent a fit and healthy person over the edge – I actually coped quite well, I guess being in a drug fulled state has its benefits 😉

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I had been doing so amazingly well with my walking, even climbing Ivanhoe Beacon, this has been seen as pretty much mount Everest to me for the past six years! Yes I had to have a little rest at the top huffing and puffing but I was so happy to manage it – A-MAY-ZING!

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It’s bigger than it looks honest!

But I have started a new protocol and very much like my much cared for sunflowers I have deteriorated big time – apparently this is a good thing, I’m not convinced myself but it is hard to be objective I guess.

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So, the last three weeks have been vom-tastic. I did manage a weekend with the yoga girls which was a well needed break and an absolute hoot!

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Yes resisting the chocolate fondant was a challenge, the Paleo diet is SO mean!

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But I found something else that I could get involved in…

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So Michael and I got well excited making distilled water for the next phase of my treatment – my kitchen looked like something out of breaking Bad:

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But unfortunately it has meant a return of all my symptoms that I thought I had got rid of – words can not describe how gutted I feel (well perhaps a few but not very lady like ones!). Anyway talking to the “People in the Know” this is really common and I have to sit it out during this period of treatment. So that’s ok – until I found out I have to now do another nine weeks of this, there are only so many box sets a girl can take!

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So, I’m just taking each day as it comes (generally on the sofa/bed trying to keep the meds down) and hope that this is worth it in the long run. It’s scary because I have been here before so many times, suffering so much with only more negative results. I just have trust that because I have had some relief for the first time in years that these guys know what they are doing…eek!

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2 Comments to

“Rollercoaster or what!?!”

  1. Avatar September 6th, 2016 at 4:01 pm snowy Says:

    Hang in there sues! You look amazing in the wedding photo!


  2. Avatar September 16th, 2016 at 9:47 am Susan Cartwright Says:

    Thanks mate but I think the grimace says it all 😉


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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 😉

 

@still_on_that_boat