Still on that boat…

Strawberry blonde in a dizzy world!

Bring me some beef flavoured Hulla Hoops now please :-)

July14

I want to feel like this:

Unfortunately I feel like this:

Well they say that with time you forget extreme pain for example during childbirth. The same thing happens with feeling nauseous. I thought it would be fine, I’d get in all the foods that help with the nausea and batten down the hatches until that part of the protocol was over. Oh how very wrong I was. I sat on the sofa all day one day unable to move, eating beef flavoured Hulla Hoops for breakfast, lunch and dinner. My Mum offering to bring around some chicken liver pate was not well received even if it was bloody home made! Blugh!

It’s ok though as I only have two more cycles of this…or so they say. I think I’m doing better than expected as I’ve not had to back off on this protocol so I’m taking that as a positive. On my weeks off I have managed to do a few things. I went to the village fete where there were floats big…

and small…

This time I didn’t have any ‘incidents’ and wasn’t going anywhere near a hospital!

It was very hard mentally as this time last year I was able to follow the carnival all the way down to the next village and walk around the village green looking at the stalls. Oh dear this does sound a bit Mid Summer Murder’ish – maybe that was a lucky escape!



I don’t think I’ll be entering my produce into the village competition:

Anyway I currently have a really bad headache which nothing can settle. I wouldn’t complain but its been ten days now. It’s not a good look walking around with a hot water bottle attached to my head and a ice pack around my neck – not to mention a tad inconvenient 🙂

It’s the downwards pressure of the string that makes me look like I have loads of wrinkles. Doesn’t it? Am I kidding myself? Someone get me a mirror now!

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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