Still on that boat…

Strawberry blonde in a dizzy world!

God bless America!

May18

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Well I’d count the appointment in Washington DC as a roaring success. They were so knowledgeable about Lyme and how to treat it and they were pretty confident that they can get me better. They are certain I have Lyme Neuroborreliosis and also another co-infection called Babesia which explains my odd blood results and some of my symptoms. They have seen loads of patients with my exact symptoms which was reassuring – yay I’m not mad! They have a very comprehensive plan which all seems like a sensible approach, although very complicated the amount of drugs and supplements I have to take.

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It’s not going to be a quick fix (I’d given up on that idea years ago!) and it will be a long tough road ahead with lots of ups and downs. I’m ahead of the game because of my diet, saunas, salt baths and yoga that I was already doing so I’m really pleased all of the hard work has been worth it. I’m cautiously positive as I’ve heard several consultants say they can get me better and then after a while just give up on me. I feel so much happier now that I have confidence in someone 🙂

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I’m currently on lots of anti-epileptics to try and calm my brain down from the damage caused by the Lyme, they will help get the pain, sleep disorder and brain fog down before starting antibiotics. I don’t know if its adrenaline or being given some hope but touch wood I feel much better already. They are supposed to make you groggy but I’m sleeping better and my head is much clearer in the day. I’ve even managed to take enjoyment in the more simple things in life – plants are doing well.

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I start the antibiotics in a couple of weeks so I know that there will be rough times ahead but hey, I’ve managed it before and I will again.

Washington was really tough and I spent most of it in bed. The corridor from hell to get to the room didn’t exactly help symptoms!

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My Dad went out sight seeing during the day, but it was okay he’d left me with supplies to keep me going – I was very glad of the cereal bars I’d packed that for sure, I can’t have any of that!

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We did go out for dinner in the evening and had a good laugh, my pure relief of the outcome allowed me to really enjoy it – I think dad did too!

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One morning I did manage to do a bus tour (I’m good at sitting down!) so I did manage to see Washington, it’s a lovely city. Arlington Cemetery was very humbling – dying in service to your county puts things in perspective and if they can do that I can fight for my health, I can do this!

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8 Comments to

“God bless America!”

  1. Avatar May 18th, 2016 at 8:52 pm Hayley Says:

    So so so pleased to hear that you got some positive news and a plan of action. What a relief! Got my fingers and toes crossed! Good luck. Xxx


  2. Avatar May 18th, 2016 at 9:28 pm Susan Cartwright Says:

    Thanks so much, it is such a relief – let’s hope it works!


  3. Avatar May 28th, 2016 at 8:37 am Susan Cartwright Says:

    Cheers Hayley keep those fingers and toes crossed for me xx


  4. Avatar May 19th, 2016 at 8:39 pm Snowy Says:

    Very exciting am keeping everything crossed!!


  5. Avatar May 28th, 2016 at 8:30 am Susan Cartwright Says:

    Cheers mate xx


  6. Avatar May 20th, 2016 at 7:30 am Wheeler Says:

    That sounds awesome Sues, and you doubted me when I suggested you could double this up as a holiday 🙂 Weirdly I was just listening to a podcast talking about how deer ticks and lyme disease is a massive problem on the east coast of the states. So I guess that makes them the experts.


  7. Avatar May 28th, 2016 at 8:36 am Susan Cartwright Says:

    Ha ha Tim I shall have to listen to you more often! Let’s hope they know more than the previous doctors – shouldn’t be difficult. 😉


  8. Avatar May 30th, 2016 at 6:53 pm Emma Says:

    Great news Sues!!!! Everything crossed that this new treatment regime will be the key to the road of recovery xxx


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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