Still on that boat…

Strawberry blonde in a dizzy world!

Shake it, shake it, like a poloroid picture, shake it , shake it (oh oh)

June16

Yeah bit random I know but that lyric from Outcasts’ song Hey Ya sums it up nicely! Well to add to my problems I have developed shaking and twitching. It’s like I’ve been plugged into the mains. It’s pretty scary but I could cope with it (well just about – knives and forks can be a bit dangerous!) if I felt better in other ways, but no, that would be all too easy.

My vertigo is really off. I’m all over the place and I almost even missed sitting on a stool the other day as the world just dipped from under me. I have also slept for days. Not the best timing when I supposed to be going on a holiday in a week.

I was having one of my random good days last week so I psyched myself up to go to Tescos. I made sure my phone was fully charged, that a responsible adult was about if I had trouble and then took a few deep breaths and left the house. I managed to battle the traffic and get to the shops. I had one of the closest parking spots to the shop, I almost did a ‘hi-five me’. I went to get my bag and realised that I had all my bags for life but no handbag. A few naughty words were shouted and I drove home. I was so mad at myself I missed the turning for my village and almost doubled my journey length. Another thing to add to my list of things to remember on the inside of my door…if I remember of course 😉

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.

Total fool?

March19

This is my period of having a ‘break’ from the gruelling treatment that is my entire life. A time to get stronger before the next attack of my body with toxic drugs. The only problem is is that I’m feeling worse and worse. It’s almost funny, I have calculated that this year I have spent about 95% of my life in bed or more excitingly on the sofa watching shit shows that my pathetic brain doesn’t even remember let alone actually understand.

I’m pinning all my hopes that this one doctor can help me. Following this protocol like a god dammed desperate idiot making myself sicker and sicker and sicker thinking that it will be worth it in the long run. But just how long is this run going to be because I’m so exhausted? Does the finish line actually exist?

A move?

March9

Well the trip to Washington was both good and bad news. They have taken a step back with treatment as my body isn’t coping well. I need a couple of months where they relax my brain after the total mess that it has been in. This is good as it should give me a better quality of life for a couple of months but clearly this is period of recharging the batteries before I attack again. Previously I had wanted to go through a period of hell and be better quicker rather than prolonging the course of treatment. After 6 weeks on the sofa unable to move I can confirm this is not the way to go and there was no way that the clinic were allowing that anyway.

I managed to have fun in Washington as I was not confined to my hotel room which was absolutely amazing! We made a lot of famous friends but to be frank they didn’t have much chat and seemed a bit fake.

Bieber was not at all impressed:

The word cougar has clearly not crossed the Atlantic:

Brad didn’t even acknowledge I was even there!

Taylor told me to just ‘shake it off’

Oprah totally agreed:

and George was a total gent and we discussed it all over a cup of Nespresso (decaf):

It always helps when you are in a position of power – ‘that’s two cups of Earl Grey, a slice of gluten free Victoria sponge and some cucumber sandwiches with no crusts NOW! Oh and why does the budget not stretch to a smartphone?’.

 

So I checked out my new pad. Hmmmm it would be a shorter commute to my appointments but where would I put my veg patch?

Michael was quite happy with a good American breakfast

 

And (a slight) upgrade 😉

Nah just kiddin – he couldn’t afford the babysitting bills!

Bon voyage

February24

Well, I’m off to the U.S. on Sunday. If I said I wasn’t worried about leaving my tiny house in my little village to fly across the Atlantic for an appointment in D.C. I would be totally lying! It turns out that my hair is actually falling out and there is something really wrong with my skin which is just fab. The least of my worries compared to everything else I know but come on give me a break! I’m really hoping that they will give me a gold star and say I have done the hard bit and things will be getting better from now on…pah somewhat doubtful I think 😉

 

Anyone peckish?

February10

I’m still trapped in my house. I have cabin fever and feel like I’m totally losing my marbles. I had convinced myself yesterday that all my hair was falling out and that I was developing adult acne.

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I then went to Mr Google to see if any of my meds could cause those symptoms. I knew it was a mistake before starting but I just couldn’t stop myself! Of course if you look hard enough you can find those symptoms with every medicine ever developed. I have now realised it may take me a while as when I counted how many tablets I would have to take today and it’s 74 – yum!

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More quality time…

February7

…with the floor. It has been such a bad few weeks. I had a trial escape but I managed to have a ‘Power Down’ so it wasn’t that successful. I was going really wild having a cup of tea at my Aunts. I mean who manages to pass out in a chair?!?! Me evidently. After being carried to the sofa, where I remained for a couple of hours as I couldn’t move, I decided leaving the house isn’t really an option. Laying face down on someone else’s sofa for what felt like an eternity was a pretty big clue! I mean a gal just wants be on her own floor if she’s gotta be on a floor right?

It has become so normal now that when my Mum comes to my house and it’s quiet she presumes I’m on the floor somewhere and has a good look around. Problem is if I can’t leave my house how am I going to leave the country for Washington? Only time will tell.

No picture. I am fed up. All creativity has been sucked out of me, oh here you go this will have to do 🙁

So it goes from terrible to horrific!

January26

Sod the sodding DVD! It has just been floor. Passing out all the time. More floor. Hands and knees to try and get about the house. More floor. Passing out even if on hands and knees. More floor. You get the picture – TOTAL NIGHTMARE!

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Well just when you think it can’t get any worse…

January21

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Yesterday I thought being confined to the house was bad enough and that I may as well have robbed a bank and been given an ankle bracelet – at least then I may have made some money! Well today I managed to have another ‘power down’ this time on the stairs which was pretty scary. Fortunately I had my knight in shining armour to stop me doing myself a mischief. So it appears confinement to the sofa is now required although I have relinquished the power of the remote control in gratitude so no watching cartoons today 😉

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Trapped

January20

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What an optimistic fool I am. After posting the previous entry my mum picked me up in her car to go to her house for a change of scene. I felt like the house was tipping as soon as I had got in the door and I hung on to the dresser for dear life. Even with my Mum and her partner next to me I still collapsed. It’s like my body totally gives up and I have absolutely no control over it. I then spent ages on the floor (with Molly the dog) letting the rocking sensation calm down, hanging onto the floor for dear life. It took me about an hour and a half to get from the floor to sitting to crawling onto the sofa.

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So, even after managing to tick off pretty much everything on my detox list yesterday (and I do most days) my brain still isn’t happy. I am totally gutted, I feel like a prisoner in my own home. I have been crawling around on my hands and knees with my phone glued to my side as it could happen to me at any time. I’ve had a few times when I thought I was going to have an ‘episode’ today but so far so good. It’s so scary as it’s so unpredictable, you don’t exactly want to be on the floor of Tescos unable to get up. It would be terrible – being passed out on the floor next to the doughnuts for two hours on my diet!

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So, I’m not really in the mood for TV so the DVD is still safe and awaiting me on the floor which could be anytime soon 🙁

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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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