Still on that boat…

Strawberry blonde in a dizzy world!

Another wonderful New Year ahead I’m sure ;-)

January6

Going to bed with a cup of tea at 11pm on New Years Eve and then waking up with a migraine is a great way to see the new year in. Hey, should I have expected anything else the way that things are going?

My life is like groundhog day (got to love Bill Murray!). The only variations are bed or sofa? bed or sofa?

Things have been shit shit shit apologies for my language but I can assure you I’ve been using far stronger. Even had a little plate therapy due to my frustrations. It was really good, I may be on to something. I’m well past colouring therapy that’s for sure!

But on reflection I have achieved some things so it’s not all bad. I made this cake for my mums 60th birthday. She is known in the village as the ‘old lady on the bike’. Fortunately she finds it funny! I’d like to say it was just one of those things that I just ‘whipped up’ but a lot of hours and YouTube videos were used in the process!

I also did some ‘photo bunting’ and decorated the house with it. So many people got involved sending me pictures that we managed to decorate the entire house.

Everyone had to send a photo and a funny comment:

It was very sad going through all the photos  – my life was so full of potential and its all been wasted. My poor mother is still having to hold me up!

It’s been very tough and I would have lost my mind if I didn’t have support from certain people – you know who you are!

Just some advice for those of you that have friends with a chronic illness. It is so hard to make contact with people when you feel ill. You feel like you don’t want to call up and bug people when they are busy with their own busy lives. That you have nothing to say as there is nothing going on in your life except illness and you don’t want to be ‘that person’ who just complains. Phone them (they can always ignore it if they feel to too ill) or send a quick message (I don’t mean me). My friends do this and it means the world when you’re stuck in all day on your own. So go on, do it 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) 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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