Still on that boat…

Strawberry blonde in a dizzy world!

America here I come!

March28

Happy Easter 🙂

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Well, the last few months have been a disaster. I have been gradually building up on the herbal formulas and feeling worse and worse. My Specialist has now run out of them so I can’t continue treatment – what a massive waste of time! Although I’m furious that my treatment has stopped due to poor organisation (awaiting a delivery from the US) part of me is pretty relived. Spending day after day too ill to get up is very hard going, especially when you don’t know if its even of any benefit in the long run. I’ve been off them ten days now and things are starting to settle down.

I have been spending a lot of time researching treatment abroad as I can see that I have exhausted all options available in the UK. I have actually booked an appointment with a clinic in Washington DC. The clinic has had some good results, no promises of a cure (of course!) but it appears that they get some improvement of symptoms in most cases. They take on more complicated patients who have had Lyme for a number of years and have not responded to any treatment – sounds like a familiar story!?!

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The only thing I had with an American flag on – typical me! So I’m all booked to go with my Dad in May, I have to hope that it is the right choice. It’s a pretty daunting decision when you don’t know if it is the right thing to do but it does feel good to have a plan of action, sitting around deteriorating is not an option! It’s almost as exciting as my tomato plants 😉

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2 Comments to

“America here I come!”

  1. Avatar March 28th, 2016 at 8:52 pm Marcus Says:

    That’s awesome Sues. I know you have had a shocker of late, so the idea of finding a completely new avenue to explore is superb and hopefully will be that final step…. Plus get to go to DC which will be a great trip as well.
  2. Avatar April 8th, 2016 at 3:23 am Emma Says:

    Wow that’s exciting! Good luck with the trip and fingers crossed for you X

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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