Still on that boat…

Strawberry blonde in a dizzy world!

I require some fun please!

September5

Hey, sorry for the lack of updates – things have been rough and technology has let me down. I have deteriorated big time, so much so that it really scares me – what will I be like this time next year? I always imagine I will feel better in the future but I’m not worried that I’ve been rather foolish. I get let down over and over and the more I try the worse I seem to get. It has been a really stressful few months with lots of bad things happening (other than my decline) and I don’t think all of that constant epic stress and worries have done me any favours. I think even a fit and healthy person would struggle.

Fortunately for me I have been supported by my friends and family – everyone has really upped their game. I received Eunice the unicorn from a good friend and it made me laugh so much I realised how rare me laughing had become. I decided I needed to find the fun me again – yup I could fit in the cardboard box that it came in. I had a GnT with her but found out she was more of a Chardonay kinda ‘gal!

With my condition being a bit dire we decided to try something different. I have a charity MS centre close to me and it is a truly amazing place. I have been doing HBOT which is hyperbaric oxygen therapy.

You basically sit in a pressurised chamber with an oxygen mask on. Yes, it is extremely claustrophobic and not for the light hearted but I’m desperate here, I’ll do anything! The theory is that the nasty Lyme bugs can not thrive in a high oxygen environment and die yay!

It is so amazing that I often share the chamber with people with such awful disabilities and I have NEVER been with anyone that complains and I have been over twenty times now. I make sure I get my moneys worth though – my mask is on so tight that I have the imprints for the rest of the day. Sexy huh?

I have also decided to now try the herbal route. The antibiotics, antivirals, antimalarials and god know what ever other crap that I have been doing have started to knacker my kidneys. I’m drained physically and emotionally. I can’t spend any more time on the bathroom floor wishing that I hadn’t woken up – and that feeling will never get me better. It’s hard as I’ve invested so much into the treatment I have been doing but I think it’s time to be brave and jump ship. Eeeek.

I’ve got to get back to the fun me, no matter what it takes!

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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