Still on that boat…

Strawberry blonde in a dizzy world!
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The shopaholic returns!

January30

I actually made it to the village pub this week for a cheeky Friday Prosecco. It was a crazy evening with the three other people in there (that’s including the bar staff!). My friend aka ‘Mr Carlsberg Extra Cold’ went mental and mixed it up a bit having a pint of Foster’s instead. It’s all happening in the Bray 😉

I have had a couple of really pants days where I was really ill and so watched back to back episodes of House. It made me really miss my job and start to question my diagnosis seeing a young guy on there with vertigo. Watching a program about brain surgery, ‘Brain Hospital – Saving Lives’ after was perhaps not a well thought out plan!

I’m still having real difficulty sleeping and it’s driving me a bit crazy, I went swimming at silly o’clock in morning on Saturday, had the pool to myself (funny that!) but it really helps to calm me down. It seems crazy that I find it difficult walking from the front door to the gate but I can manage 30 lengths at the pool with ease, although a tad pissed looking when I get out! I was really cheered up my some magazines sent by a friend, ‘Recipes’ and ‘Practical Poultry’, how on earth did she know I hadn’t read that issue? I have read it now by the way, you never know what will come up in a pub quiz! Actually, I felt a bit guilty looking at the chicken recipes after.

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Fortunately, I went to see my Consultant this week, described by some on the migrainous vertigo forum as an earth angel, he is a lovely man. He spent an hour with me as he realised I’m currently in quite a mess. I told him I’m so desperate I’d do anything – if he told me to stand on my head for three hours a day singing hickory dickory dock I’d do it, he laughed and said he didn’t think that would do me to much good, bless him. He was so kind, reassuring me that I’m coping with the illness really well and that he has seen men who have been navy seals reduced to absolute wrecks. It looks like it’s more medication and some more scans to make sure we have the right diagnosis as things have gone a bit down hill. Or maybe its just to make sure I actually still have a brain in there, I swear it’s just porridge!

What was really amazing this week was I actually managed to go clothes shopping with my mum and I didn’t pass out! I can’t actually remember the last time I did this, it was really exciting. As anyone who knows me well understands I absolutely love my clothes. I had kindly been bought some clothes for Christmas by my mum and her boyfriend and anyone who gets me knows that brown leggings two sizes too big really aren’t my style, (it’s the thought that counts) so I had some items to exchange. I swapped a very pretty lace dress my mum had bought me for a towelling dressing gown, oh how times have changed. Ha ha I know which one I’d get more use out of at the moment! I’m also the only person who buys a polka dot bikini when there is ten inches of snow outside and it’s -4 (can I blame this on my meds?). Well it cheered me up and made me think of summer so I don’t care! Oh,I also down loaded the Taylor Swift album, I’m definitely blaming that on my medication!

Anyway, I’m exhausted and paying for the trip out to see my consultant. Not helped by being told the wrong place to go which was in fact pretty much the furthest point from where the actual clinic was. So I was staggering round the hospital lost not able to read the signs – fortunately I found someone to help me who didn’t run away (Lets just say I looked like I’d started on the gin and tonics very early!) so all was well in the end. I feel much more positive that I, with help from family and friends (you know who you are) will eventually crack this thing. Fingers crossed!

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