Still on that boat…

Strawberry blonde in a dizzy world!

Gees that was a long sleep!

April16

Well since that appointment things have been extra tough. I think I’ve been pretty much asleep ever since DC. My mobility is getting worse and worse and I’m spending even more time in bed or on the sofa than I was before the appointment. I think of what I’m going through is due to the fact I’m reducing my neuro medications but you can never quite tell when there is so much going on, there are far too many variables to be sure. I was on really high (maximum) doses of a couple of drugs and now I’m trying to reduce them and it’s proving to be really hard – my body is not happy at all! I feel I need to join Ant in rehab – at least he could make me laugh about it!

On my quest to find answers on how to deal with this living hell I went and ordered every secondhand self help book that has ever been recommended by anyone. They are currently piled up on the coffee table looking like the leaning tower of Pisa.

Most of them just piss me right off if I’m being honest. Dealing with a chronic illness which may or may not resolve isn’t really covered by most books. Think I may write my own! One book was recommended by a friend, I won’t mention the actual title as I wouldn’t want to put anybody off reading it. Someone else may get real benefit from it as its definitely not a one size fits all with these types of books. It was about how you have to basically chill out, wish for what you really want and the universe will look after you. Well, that very quickly got launched across the room with me shouting ‘no it bloody doesn’t!’. I think I’ve reached a new low point when I’m having a go at a book, that’s clearly not doing what it says on the tin. The only book that I found to help me with my frustrations was ‘The Art of Happiness’ by the Dali Lama. There are really simple suggestions and observations that have made me feel less frustrated and helped me a bit with acceptance of my circumstances. I mean, not totally – it’s a work in progress.

 

I have now updated my list of which three people I’d have at a dinner party. It’s now James Corden, Adele and the Dali Lama, I think we would have a really good laugh!

With the Dali Lama in mind I stumbled across a Buddhist monastery (not literary I used Google) not too far from me that where they give meditation workshops. Now if you’d told me a few years back that I’d be taught by a monk in a temple how to meditate I’d think you’d taken some sort of hallucinogenic drug and suggest YOU go to rehab! I never would have done this if I hadn’t got sick, not in a million years.

The workshop was lovely. It was so peaceful in this beautiful temple surrounded by amazing scenery. There were about 60 of so people there, all ages, races and backgrounds and it was so quiet. There was something really calming about it, being surrounded by this huge group of people who want to learn to meditate for what ever reason they may have for exploring it. I’ll try and go again at some point. You won’t catch me in orange robes though – red heads don’t do orange 😉

I take that back, some red heads can!

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2 Comments to

“Gees that was a long sleep!”

  1. Avatar May 12th, 2018 at 4:43 pm Marcus Says:

    Watching for the facebook vid of some buddhist meditation that we can all learn from. I hope the reduced meds are now settling a little.


  2. Avatar May 31st, 2018 at 4:23 pm Susan Cartwright Says:

    Cheers mate xx


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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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