Still on that boat…

Strawberry blonde in a dizzy world!

Ups and downs

May29

Sorry for the comms down I’ve been a bit too fed up with it all and I didn’t want to bore people with the same old same old. It’s certainly boring me! The treatment has been really tough and as this is my ‘break’ protocol I’m a bit concerned about the protocol being ramped up next month. I can’t even think about that when I’m feeling so pants now.

I can’t totally complain though. I had a lovely ‘night off illness’ where I had a great night out for my birthday seeing a cover rock band. There is nothing like a bit of Jon Bonjovi to make you forget your troubles. Well a few troubles caused by multiple really odd guys in stripy t-shirts but that’s another story. We still managed to have a really brilliant night out.

I also managed to get to a friends wedding. I had decided not to go as I didn’t want the pay back and the risk of a ‘power down’ was quite high. Then at the last minute I decided sod it, this illness can’t rob me of EVERYTHING and I got there just in time. It was worth it. Oh dear I was sporting the ‘eyes in different directions’ look – I don’t think it will catch on!

Things are not great now. I’m having some horrible side effects from the drugs so not only am I all over the place my face looks like I’ve had a chemical peel. My chest and shoulders have flared up with something crazy i.e. unidentifiable on Google. I look like a spotty teenagers’ forehead is on my chest. I call it my frackne (front backne).

I tried to go out the other night. Once again to try and have some normality. Big mistake this time, huge! We went to Café Rouge for the evening as we have not been out for ages. More like ‘Face going Rouge’! I had a ‘powerdown’ as soon as I walked in. Going down like a sack of potatoes meant that the ‘event’ wasn’t exactly discrete. I had to be dragged to the side so that people could get in and out – it was all very dignified! Needless to say we left and I’m NEVER EVER setting foot in there again.

So I’m not really looking forward to adding in more drugs. Fortunately (or unfortunately depending on how you look at it) I have a holiday booked.  Its slightly concerning that I can’t even make it out for dinner without disaster. Hopefully I can have a nice relaxing time before bringing on the big guns.

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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) two and a half 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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