Still on that boat…

Strawberry blonde in a dizzy world!
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Let the games begin…

June27

I think I have overdone it a tad. Too much excitement what with disco balls once a week (oh the fun I have doing that!) BBQ’s and a weekend away with friends. If you are reading this blog because you have a similar illness to me please listen to the following advice; do not go to Centre Parcs unless you have a lot of support! Stone paths, moving trees (how very dare they?) and lots and lots of walking involved. I did have a great time catching up with my friends though!

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I was very lucky to have some great friends to look out for me. I had to be pushed around in a wheelchair by people, mainly Dave (AKA Jeeves). I felt pretty pathetic and It was quite hard putting a brave face on when strangers keep giving you pitying looks. Fortunately I couldn’t feel sorry for myself for too long once the wheelchair games began.

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It was so funny watching the queue of traffic behind Karl as he tried to race back up the road. Everyone is so PC at the moment I don’t think anyone in the car’s dare say anything!

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The games continued into the evening with the ‘ can you touch your left ear with your left hand going around your head’ game. You would never believe we were a bunch of highly qualified professionals. It was fun!

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I have been on one date which was interesting. To be honest I would never had recognised him from his profile picture (good job he recognised me!) but he was really funny and we had a good laugh. I don’t think I can see it going anywhere but I’ll keep you posted. I’ve been watching the channel 4 programmes on Internet dating and I have realised that my profile is somewhat flawed as I have been totally honest, I’ve not exactly sold myself and used rubbish pictures – oh well. It’s all ok though because I now have a ‘selection matrix’ devised by my Mum’s boyfriend (I cracked up when I saw this!):

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My local pub reopened which is a relief! Surprisingly there was a bit of a punch up (oh the drama). It was between a good friend of mine and a guy I was sort of blackmailed into going on a date with ten years ago (long story) and have not seen since (so that was not too awkward!). I hid behind my mate who is literally ‘the only gay in the village’ – not sure he was the best choice!

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I need to rest up for the next disco ball session. This better actually do something as I seem to be spending an awful lot of time in bed at the moment 🙁

Back in the Bray

June4

Well I’m really happy as (fingers crossed) I seem to be doing ok since my return from Spain. I thought I’d be really ill, especially after the airport drama (God only knows how I survived that!). I think it helps that we have beautiful sunshine at the moment and I can finally get my garden chair out of the shed.

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I think it’s given me a bit more confidence realising that if I pace myself I can cope on my own. Having a bit of independence back feels amazing and I must try and keep it up. I also realised that I can make friends because despite being sick I’m still a nice person and if they are worth being friends with they will not mind about my ‘incidents’. Me wobbling all over the place and hanging onto trees didn’t seem to phase the Hungarian at all he just helped me out and didn’t think I was crazy (well at least he hid that well if he did!).

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With that in mind I’ve put myself on a dating site (don’t laugh). I’m not fussed so much about a relationship but it would be nice to meet some new people and see what happens. Don’t get too excited I’ve only had interest from 60 year old, fat, bald men. No offence I’m sure they are lovely.

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I went to the landlord of the local pubs wedding reception which was fun it was in a sculpture gallery. A little old lady actually asked me (giggling)to take a picture of her, the cake and the ‘bits’. I got pretty well acquainted with the floor there too but not due to the vertigo. Wooden floor + bubble machine + stiletto heels = VERY BAD COMBINATION (and no it wasn’t the wine!). It would be me that found that out first! I was so worried about the blinking patterned carpet setting me off I didn’t think. Anyway, I found my perfect man (may cancel my dating site subscription) – the strong silent type 😉

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Egeszegedre!

June4

Well the rest of my holiday was an absolute hoot. I ended up going out for dinner with the Hungarian. I was meant to meet him and all his friends but only he turned up – that old chestnut! He took me a a place where all the Spanish ate and we actually had a really fun time even being sent drinks over by the police it was a very funny night! Don’t worry I wasn’t planning on doing a Shirley Valentine 😉

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I had a couple of quiet days and rested up for the whirlwind that is Maggie and Steve. I have to hand it to them after two hours sleep of sleep I thought they would be exhausted (I had to sleep more than them) but we headed out for a great night out on the town. The highlight had to be Maggie looking very angelic in a pretty dress in this great restaurant explaining the difference between shouting and shitting (with actions) to a bemused Hungarian!

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The remainder of the holiday was mainly spent eating, eating and err more eating. It was great! The Pepper de Pedro was a success as expected.

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Coming home was hard as it always is after a lovely holiday but it was made especially difficult by a patterned floor in the airport. Needless to say I hit that pretty hard and spent some time getting acquainted with it. With the help of Maggie (who just made me laugh all the way) and Steve (who I almost took down with me!) I somehow managed to get through security (looking absolutely plastered) and got home. Egeszegedre – that’s Hungarian for cheers 🙂

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And sleep…

May20

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I had an interesting night last night in the local bar whilst trying to use their wifi for my blog. I was so engrossed trying to fix a few problems (pretty unsuccessfully but I had a go) I was surprised when I was approached by someone. They wanted me to make their numbers up in a game of pool. I explained that I’d not played in years and even then I was pretty awful. We had fun and I was asked out by a Hungarian masseuse (that’s a new one). Having not been asked out in quite some time I panicked naturally assuming he was after my iPad or he was the local axe murderer. I politely declined. He also offered to show me around today which would have been nice but its hard enough trying to explain my illness without a language barrier – he may have got more than he bargained for when I’m lying the floor! Again I politely declined.

I really had to be careful. It’s difficult enough for a girl on their own without adding my illness to it. I stupidly hadn’t payed much attention to the hypnotist who was entertaining people for the evening until he headed in my direction. He tried to hypnotise me (I didn’t have much choice in the matter to be honest!). Poor guy had no chance I had a panic as soon as I’d closed my eyes. I was too busy thinking ‘I’m a girl on my own with a illness that leaves my very vulnerable with my eyes closed and my iPad in my bag with a guy trying to chat me up getting hypnotised’. Smart! Needless to say it didn’t work I was chanting ‘don’t sleep don’t sleep don’t sleep’ in my head. So if you click your fingers and I start walking around clucking like a chicken you will know why!

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The weather is pretty terrible. I never though I’d be so glad that dad had left behind his fleece I’m practically living in it! I’ve been sitting in the balcony with about 12 layers on and the fleece over my red polka dot bikini (ever the optimist!) and a pair of socks. I’m still the only person who has been swimming in the pool. Understandable as I had to have a 30 minute boiling shower just to get rid of the brain freeze yesterday. Fingers still crossed for better weather 😉

All by myself…

May18

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Sad face. My Dad has gone and I’m on my own for a few days before Maggie and Steve get here. I thought I’d really enjoy having some ‘me time’ but I’m so bored. I think it would help if the weather was a bit better. I actually checked under my bed last night (note to self: stop watching scary films!) and missed dads snoring from the room next door (I’ve wanted to kill him the last few days so that’s saying something!).

I’m very proud of myself though. I had to rest all day but I managed to drive on the wrong (or right) side of the road, buy some food from a shop (without incident) and sit in a bar on my own (to use their wifi and update my blog of course!). Yay me 😉

Yeee haaar!

May16

Hmmm I just wrote a really funny blog with lots of nice pics and it has been deleted twice. Having a major throw myself on the floor kicking and screaming strop (in my head – I’m in a bar using wifi I don’t want to get sectioned!)

Ahhhhhhhhh!

Lets try again:

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Well that was about as fast as I wanted to go! I had a lovely lunch out with my dad followed by some rather dodgy walking and hanging onto lamppost’s. Anyone who knows my Dad probably figures that that’s just part of the course when you go for a boozy lunch with him but I’d only had an iced tea I promise! I looked like such a chav – a typical Brit youngster on the sangria all morning and could now barely stand. I managed to get back to the car without passing out in donkey poo (that would have been a new one!) so all was well in the end 😉

The weather has been a bit iffy and extremely windy but it has been lovey to chill out with my dad. I know I don’t exactly have a busy life back home but its been nice to relax because that’s what you do on holiday rather than just because you have to.

We found some Peppers de Pedro (with a lot of pointing and charades style movements)in a tapas bar which was very exciting as they are amazing. I can’t wait to introduce them to my cousin who is coming out in a few days. She loves food – mainly salt and hot things so these will be right up her street!

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I also got very excited about Henry’s Bar. For those of you that have more of a life and don’t watch reality TV (I can’t believe I’m admitting this) it was featured during an episode of The Only Way is Essex (oh dear I feel I’ve reached a new low!). I looked so cool walking in with my Dad I thought I’d just throw what was left of my street cred out the window and pose for a photo. Totes amazing!

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As I can’t walk far I’ve had to learn to drive on the right (more like wrong) side of the road. It’s been fun but if we’d had a swear jar I would be a very wealthy women by now. Right fingers crossed for some sunshine!

Wedding bells and glitter balls

May8

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Yay got out of my PJ’s and put on my best dress, borrowed shoes and a matching handbag from my Auntie Jill (very handy having an Auntie who has lots of lovely shoes in my size) and headed to Nick and Jac’s wedding. It was a really beautiful day and it was really lovely to see old friends and catch up and even have a dance. The weather was a bit terrible – when I got to the reception I think it’s the first time in my life I wanted a hot cup of tea (decaf) rather than a glass of champagne 😉

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I have been going to the Visual Vertigo clinic. They seem to think they can help me with my vertigo so I’m giving the glitter ball a go. I managed three minutes (it felt like a lifetime) before collapsing in a heap. I did lie there wandering what on earth I was doing – it is like purposely making yourself really ill. I suppose once you have given the ‘purple ugg boot wearing Chinese medicine women’ (who insists on having a hug before I leave each session) and Barry the ‘psychic healer’ a go you may as well let the madness continue – what have I got to lose? (Well apart from my lunch and the rest of the day!)

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I have also seen my Consultant who increased my meds (yay more nausea) and had another MRI. I thought ‘Help’ by the Beatles was an interesting song choice to listen to when your stuck in a tube for half an hour but hey whatever floats your boat 😉

It’s great to finally get some good weather and sit out in the garden. I do have to add that as soon as my garden chair arrived from Amazon there has been a slight change in the weather! It’s a good job the dog wasn’t shirking on his guard dog duties – it’s a dogs life!

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I’m off to Spain next week with my Dad so I’m looking forwards to a change of scene and some tapas (I’m not expecting sunshine as the forecast is looking pretty bleak for as soon as we arrive – I’m not even taking my chair!). Updates coming if I can find wifi. Adios amigos 😉

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Birthday girl!

April23

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Oh dear another year older but not too worried as I’ve had a few people lately think I’m in my early twenties (yay!) and I still struggle buying wine in Tesco’s. It’s so flippin hard getting myself to the drinks isle in the first place due to my vertigo (why is it always the furthest place away once you get in the shop?) it’s almost funny to then get ID’d just to make it that little bit more of a challenge!

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Had a quiet birthday made really nice by my family all descending with alcohol, cake and gifts (they know me so well) despite me saying I didn’t want to do anything. After a couple of Prosecco’s and not being able to find the scissors my cousin showed me the ‘Bread Knife and Two Pairs of Hand’s’ method of flower arranging – hmmm wonder where he picked that skill up?

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I then spent the weekend with friends in Reading where I found out the hard way why wearing a white top and eating a curry is a really bad idea (especially after one or two drinks!). I think Buster the dog also enjoyed some sensible adult company 😉

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I have an appointment next week at the Visual Vertigo Clinic which should be interesting. It’s most likely that it will make me really really poorly but if there is even the slightest chance it will work I’m going to give it a go – let’s face it I’m pretty desperate. I have heard that one of their ‘tricks’ is to look at a big disco ball until you fall over. I’ll brush up on my dance moves (oh and my stacking it on the floor moves – come to think if it I’ve pretty much mastered those lately!)

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Right, now for some light reading 😉

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Hysterical – look what came in the post!!

April17

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Sleeping Beauty (on the inside)

April16

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Yeah I look just like that in my checked flannelette Primark PJ’s 😉

Sorry, no blog entries for a while as things have been pretty awful. It’s difficult to make day after day in bed sound very exciting or funny when its simply terrible. I think (fingers crossed) I’m startling to pick myself up again, unfortunately there is no Prince Charming to save me from my nightmare. I am seeing my consultant in a couple of weeks, I guess he is a kind of hero in this story. Lets hope he has a good plan up his sleeve!

I got this get well soon card which kind of sums things up!

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I did manage to get out and go to a barn dance for a bit (just spectating of course). My mum helped organise it to raise funds to save the village green from development. I have never seen such a bunch of uncoordinated people in all my life and even in my majorly fed up state I couldn’t help but smile. There were women forgetting that they were taking the place of men and vica versa, people who had clearly never heard of the term clockwise and lots of crashing into each other – how an ambulance was not called was a miracle!

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Won a cracking prize on the raffle too, very seasonal!

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Lets hope things pick up soon or I may just be swigging the above for breakfast 😉

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Hi, My name is Susan and in 2010 I suddenly got very sick with vertigo and extreme fatigue. My life as I knew it changed forever. I had to leave my job as a junior Doctor to move back home with my family as I was unable to look after myself, let alone other people. It took a very long time, about 2644 doctors visits and ALL the tests to be told ‘congratulations, all your results are normal there is nothing wrong with you’, which was the most devastating news of all as there clearly WAS something horribly wrong, we just could not identify it.

 

Eventually, I was diagnosed with Chronic Lyme Disease which was great news as I finally had a reason to feel so ill. That was until I realised that there is no real recognised treatment and I was once again left to trying to navigate debilitating symptoms alone. More doctors, more tests, protocol after debilitating protocol and plenty of ‘ah ha’ moments later I finally started to heal. It was quite the journey and I have learnt a lot about what treatments are out there, and perhaps more importantly, the body’s amazing capacity to heal. I am now in a position where I want to help others to reclaim their health.

 

@still_on_that_boat