Still on that boat…

Strawberry blonde in a dizzy world!

So, where were we?

May22

My oh my how time flies by. I can’t believe how long it’s been since my last post but I have some pretty good excuses and a lot of stories and great information that I can’t wait to share.

I was in America having treatment for Lyme, co-infections, adrenal fatigue, hypothyroid and mould toxicity. So just a few things. I was doing quite well and then crashed and we had no idea why. We had the house that I was staying in retested for mould and it turned out that there was mould in the air conditioning. Not ideal! So, this was promptly fixed and the epic task of de moulding all my clothes and furnishings was once again completed. I restarted the mould treatment which then made my symptoms flare up. However, because I had felt so much better after I was previously treated for mould toxicity I knew this would pass. I was excited to see what my health would be like after the treatment.

I was in bed a lot, had more vertigo and dizziness but I was managing to get out and do some things. I would go for a yoga class in the park or a Wim Hoff session (this is an awesome method that deserves its own entry!) and I’d be really happy. I even went out for dinner a couple of times and was starting to develop a social life and make some really good friends. I totally fell in love with my yoga buddies and the quinoa pancakes at my Sunday brunch yoga class. I threw myself into the world of sharing circles, singing bowels, Acroyoga and even a yoga silent disco. I was officially more of a hippy than when I had started!

Then disaster struck and I realised that my visa was running out (bloody paperwork!) and I had to leave pronto if I wanted to return to the USA again. I was devastated as I was pretty positive that the treatment was working, and I didn’t want to stop. I knew I’d really miss Mary and Andrew, my lovely friends and all the fun activities that I could join in with. It made life so much easier (and fun) having things that I could manage right on my doorstop. If I became too ill it was only a couple of minutes in an Uber to get home to the safely of my bed. That gave me a lot of confidence to try things that I wouldn’t necessarily have tried before.

I’m so grateful for Mary and Andrew giving me this opportunity to try all these new things that were available to me. They always encouraged me to try more and more. I could spend a day in bed, come down in the evening to announce that I was trying a hot yoga class in an hours’ time and they wouldn’t bat an eyelid. They never made me fearful to try things that on paper were potentially not a good idea for someone with my symptoms to try. Always cheering me on when I came home after a successful trip out. I can safely say that Mary and Andrew are the most fun people I’ve ever lived with.

Clearly, if I wanted to partake in an activity I would have to rest before and be aware that I would sacrifice time after to recover but I’ve played this game long enough to make my peace with this way of life. Although, I’d be totally lying if I said it doesn’t still really piss me off or confess to actually mastering this concept! Sometimes this worked, sometimes it didn’t but hey, at least I put myself out there and tried which is not easy when you are so restricted and can pass out at any time.

Although I was keen to see my family, the thought of going back to my lonely village in the UK with not a yoga lesson (or ray of sunshine!) in sight was a seriously depressing. It turned out that the universe forcing me to go home was the best possible outcome for me as the mother of all shit storms was heading my way…

Every cloud has a silver lining after 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 😉

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