Still on that boat…

Strawberry blonde in a dizzy world!

Having a pants time!

January25

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Well that appointment was rubbish. I started to deteriorate again after coming off the antibiotics which to me made me think that this was the key, I just need to be on them for longer. After getting my hopes up that I’ve finally cracked it I left that hospital absolutely devastated not feeling like I had that many options.

Hangmans-noose[1]

I was told that three weeks antibiotics was sufficient to treat Lyme disease (very controversial) and was discharged from their care. I did argue about guidelines being just that, guidelines and that surely treating according to how the patient responds is more important but it fell on deaf ears. I felt completely ignored, the decision had clearly been made before the appointment and It really didn’t matter what I said. I am being referred to another doctor who has more of an interest in Lyme but the earliest appointment is April and I was led to believe that his treatment (or lack of it!) would be the same. What am I supposed to do until April, haven’t I wasted enough of my life?

waiting[1]

Fortunately my GP is really on my side and has given some good advice. I feel better now that I have been proactive and contacted some people more experienced in Lyme explaining my story to see what their opinion is. I can’t accept that this is it for me!

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So I have been pretty low (to put it mildly) but managed to distract myself with my sisters Christmas present to me – a polka dot knickers making kit! I think pants pretty much sums it all up nicely!

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6 Comments to

“Having a pants time!”

  1. Avatar January 25th, 2015 at 8:54 pm Snowy Says:

    Nice pants! Sorry about all the crap – fingers crossed for a new specialist.
  2. Avatar January 29th, 2015 at 8:01 pm Emma Says:

    Is it worth seeing if you can pay privately to see the guy for an initial appointment? I found £100 meant I could jump the NHS queue (wait went from 12 weeks to 2 days) but then all my tests were done by the same consultant in the NHS. Not strictly morally right, but it sped things up. Good luck x
  3. Avatar February 12th, 2015 at 2:06 pm Susan Cartwright Says:

    Well it turns out the NHS pulled the funding of his clinic so you can’t see him no matter what you pay – the fun continues! I have since found someone else who may be help and yes I’ll be paying for that. It’s very expensive being ill!
  4. Avatar January 30th, 2015 at 8:58 am Jan (A gluttonous wife) Says:

    Bloody hell Sues…..keep searching honey!!! I’m totally off the beta-blocker, what a horrid 2 weeks of withdrawal that was, but now coming off the amitrip, but have been feeling like a fog has been lifted and definately have more energy…but not cured by a long shot!! Sorry I’ve been crap on the email, but still there anytime for a natter and always can find us a laugh.

    We have to keep looking for answers as it’s in our nature…you are a strong cookie!!

    love Jan x
  5. Avatar February 12th, 2015 at 2:09 pm Susan Cartwright Says:

    I so sympathise, withdrawal is not a very fun pastime! I’m glad the brain fog has lifted though, I feel like that since coming off the pregabalin. These drugs really seems to do more harm than good sometimes. You take care xx
  6. Avatar February 19th, 2015 at 10:33 pm Emma Says:

    Who are you seeing now then? Hope the wait isn’t too long 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 😉

 

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