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Strawberry blonde in a dizzy world!
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Hitting the town!

April5

Having ANOTHER duvet day today, I literally can’t get my head off the pillow.

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It’s ‘payback’ for my trip out with my Dad yesterday which was a flippin nightmare. I had started to feel a bit better and so we thought we would go out for lunch and try and go around a couple of shops. Yes, me poor old Dad has been so worried about me he was prepared to go shopping to cheer me up – brave man! Well to cut a long story short it ended up with passing out and hitting my head on the wooden floor of the pub we’d gone in. No I hadn’t been drinking the hard stuff before you joke, it wasn’t even midday! Embarrassing. I just had to lay there as I couldn’t get up, eventually I managed to get to a chair and rest my head on the table for half hour (I must have looked absolutely battered!).Dad had a couple of pints (for the shock of course) I think he was feeling lucky I’d passed out in a place that served alcohol and not say Topshop. Mum’s feeling a bit cheated as I only manage to pass out in Waitrose when I’m with her! The landlady was very understanding (after we convinced her not to call an ambulance) and made me a lovely cup of tea with a sugar in it. I didn’t like to ask for decaf (or a scone!), bless her! The most annoying thing of the whole day was that the only thing I managed to buy was some more supplements (which clearly aren’t doing a huge amount!).

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I received a beautiful bouquet of flowers today from Claire and Dave which really brightened up my day and gave me something pretty to look at.

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I think i’ll take it easy for the next few days (probably wont have a choice in that) as I don’t want to risk another incident. It would be so much easier not to leave the house ever again. I can have a good flick through my gardening magazine (cheers Marcus and Sophy) and plan what to grow this summer if this cold weather ever goes away! Can’t beat a bit of basil 😉

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Well at least the dog’s happy (I think he’s waiting for a rerun of One Man and His Dog). He always makes me laugh!

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Groundhog Day!

March24

Warning: this post is not as upbeat as previous and may possibly slightly depress you.

Things are bad. Is this pay back for the fun period I had away or was it going to happen anyway? I don’t know and I just don’t know what to do.

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I know it’s probably not healthy to think in this way but I’m no different in my illness to how I was this time last year and the year before that. My life seems so pointless and I feel so useless. I have no control over my life and there is nothing I can do to make it better. Frustration is not the word! The medications are not working they just make me worse I’m simply just waiting around in the vain hope that one day things will get better. But will they? Am I just kidding myself ?

I am managing to do some things but I pay for it. I’m spending a lot of time in bed so my backs playing up again from just being inactive. At some points this week I’ve been so ill; just sitting on my bed trying not to vomit or pass out and drinking peppermint tea. I swear Twining’s will go out of business the day I get better. I have to text my poor mother for the tea as I can’t get up – my mum deserves a medal.

I did manage to go to the pub for a couple of hours but I just can’t really enjoy it. I know there are people who think there is nothing wrong with me as I can go out. I do feel I need to explain things to everyone but its exhausting. Some people are kind and ask me how I am but I’m so drained from putting on a happy face and pretending that everything is fine. I want to scream at the top of my lungs that actually everything is f#%^€¥g awful. I have worked hard all my life and always tried to be a good person; it just seems so unfair that I’m going through this constant torture! Just as I seem to make some progress I go back to square one 🙁

The bath is the best place for me as I can have a good cry without upsetting anyone else or pretending I’m ok. I swear I’m sitting in mainly salt water some days – hmmm wonder if that’s good for your skin?

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I don’t think it helps that it’s my birthday soon. I never envisaged that at this age I would be living in a room at my mum and her boyfriends place with no money, no job, no independence, no life. I’m happy for my friends don’t get me wrong, but they are all In their own homes, have jobs, having kids, married, healthy and I just think why can’t I have a normal life (whatever that is?). I know the grass is always greener and all that but I don’t even have any grass at all its just concrete!

Anyway, I know I’m feeling sorry for myself and hopefully i’ll pick up again soon and restart the game. I just thought it may help to have a moan. I got this fortune cookie the other day and I will try and follow if once I’ve had my wallow I promise 😉

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A Scooby Doo duvet day!

March15

Well, you can probably tell from the lack of entries things have not been so great. I’m not sure whether it was due to a little too much excitement, emotional stress or maybe just cream tea withdrawal 😉

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They say things happen in three’s and I had three sets of rather terrible news. It’s unbelievable, it’s like just as I start to get myself on top of this illness the universe conspires against me and sends me crashing back down. I tried to not get too upset as I know it really effects my illness in a bad way. So to cheer myself up I headed to the local shop to get supplies; sweets (not quite chocolate I know – bloody migraines) wine and a trashy mag. Yes, it was so clear I was having a bad day from my purchases the guy behind the till laughed about it. I hardly ever get magazines but I was so spaced out I managed to buy exactly the same one I’d bought a couple of weeks before. Brilliant!

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But good old Soph and Hayden cheered me up with the ‘Dartmoor board game’ which was just amazing (thank god I’d bought the wine!).

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And a little light reading (should have made it two bottles!):

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We had a middle aged party which was fun.

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I love the fact Soph looks like Margo from The Good Life whilst I look like I was just waitressing at the party, we clearly have very different ideas of being middle aged…worrying! Although I just have to add I have none of the attributes which make you middle aged (mortgage, husband, kids) apart from the wrinkles (or crinkles).

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Besides, after my life has been so limited I intend to grow old very disgracefully! It was a cheese and wine party, I liked this guest’s offering – much more my style:

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For Mothering Sunday we went to Hayden’s family’s for lunch. Oh the embarrassment. Barely five minutes after my arrival I suddenly started to feel very unwell and so I sat down. As this was the first time I’d met Hayden’s family the questions were coming thick and fast. Just as his brother in law was asking me what vertigo actually was I was experiencing it pretty badly; lets just say the floor was looking very appealing (the thought ‘oh bugger its wood flooring not carpet’ actually crossed my mind). Fortunately Sophie noticed I was white and swaying and took me upstairs where I had to get into the first bed I found. I laid on the bed and was so faint and all over the place I simply couldn’t get up and so had to stay there for the rest of the day. What was worse was that It was in Hayden’s 11 year old nephew’s bed complete with Scooby Doo covers (Soph wanted to take a pic for my blog but I was too ill to find the situation funny at that point). The poor boy asked where I was and Soph told him that I had become unwell and was in his bed resting. Then apparently the family all laughed as he was a little young to appreciate the humour behind some random girl getting in his bed. Hayden’s family were so lovey about it all.

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So I’m back in the Bray now. I’m worn out and wobbly from the journey. I don’t think it helped that I wasn’t very good before traveling and it’s so unhelpful that I’m so unclear on why exactly I felt so bad. Perhaps it was the combination of overdoing it and emotional stress. On the positive side I had such an amazing time in Exeter, I met some really lovely people, had a good giggle and managed to do things that I never would have thought possible. Thank you so much Hayden, Sophie and of course me good old Dad for picking me up (not literally off the floor or anything, his knees wouldn’t cope with that he just drove me home) 🙂

I’m off for another duvet day but its just not the same without Scooby 😉

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A change from cream tea :-)

March6

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I’m the king of the castle!

March6

Well soph and Hayden have been absolutely brilliant at trying to come up with things to keep me entertained (but vertigo free) and we were running out of ideas. Sophie sarcastically said she could take me climbing. I thought about it for a second and then said ‘why not?’. I used to absolutely love climbing back during my Uni days, it really helped me to relax. Vertigo isn’t a fear of heights as many people mistakenly believe after a certain Alfred Hitchcock film. So we booked Clip N Climb at Exeter climbing wall eek!

I had almost had panic attack at 4am on D Day – not so much about the actual climbing but the impact it could have on me afterwards. Only had to swig a couple of bottles of Rescue Remedy to calm down! I relaxed all day so I was the best I could be vertigo wise.

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it was a nervous start on both parts. I think Soph deserves a medal for bravery for just taking a person with vertigo climbing let alone the actual climb itself! We were very fortunate in that normally there can be up to 30 kids in the place and we had it entirely to our selves; it was quiet and not busy so ideal for me. We had an absolute ball! After a shaky start requiring promises of wine and pizza to get Soph down from the top we were away. I found that as long as l didn’t look up or down and just concentrated at the matter at hand I felt fine!

Gladiators ready:

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At the top (let’s call it a draw ;-)):

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It’s was a tricky one but fun:

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The ‘Leap of Faith’- climb 8 metres up then launch off a platform onto a trapeze, just like being in the circus!

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I only did this to let the illness know who’s boss (sounds ridiculous I know).This was terrifying! I started to feel a bit dodgy at the top, the only reason I managed it was I realised that jumping was the quickest way to get down! Of course after the ‘invalid’ managed it poor old Soph really didn’t have much of a choice 😉

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I think this photo screams ‘screw you vertigo!’:

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Soph was so relaxed on this one she managed some yoga:

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Then we went for some well deserved wine, pizza (cheese free of course!) and banoffee pie.

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I’m so excited I managed it but I’m well aware I could pay for this big time over the next few days but it was worth it to feel NORMAL again. It’s nuts that I found climbing much easier than walking to the local shop 100 metres away. This illness really puzzles me but coming away has made me realise that yes, I have to be careful and ‘listen to my body’ but it doesn’t mean that I can’t ever have fun again. Duvet day today after all that excitement 😉

I could murder a cream tea!

March5

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I have been doing quite well as long as I’m sensible and ‘listen to my body’ as I keep being told. I’m loving having some more independence as just a couple of minutes in the car takes me to the town centre. I went to a really great yoga class, in fact the yoga was fine vertigo wise it was the patterned carpet on the stairs and trying to get back to the car park which was the problem – yes, another afternoon in bed was required!

I braved it and went back to another class (closing my eyes going up the stairs this time). My goodness it was great but it went on FOREVER; not just yoga I do feel I heard the instructors entire life story. I was listening to my body (as instructed) and it really needed another cream tea. I was starving. I left the class on the pretence that my car parking ticket was running out and went to the cafe next door (I’m going straight to hell). I had to laugh at myself ducking down in my chair so nobody would see me as I scoffed my face with clotted cream. In my defence the class over ran by an hour and a half – I love yoga but a girls got to eat!

I also went bird watching again and made a massive effort to look like a pro, no mistaking me for a shopaholic this week ha!

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I do find the bird watching relaxing but I have to admit my main agenda for going is the really great cafe we pop into on the way home. Yes, another cream tea – there may be a not so subtle pattern here 😉

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We also had a Murder Mystery party which was a right laugh. The ‘Death By Chocolate Murder’s’ which involved Billy Bonker who had been blown up by an exploding Easter egg in Paris and we were all suspects. The icing on the cake was Michael Winner on the accompanying DVD!

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Soph and I went into operation Blue Peter/Mary Berry mode and went to town with the theme. I made the easter egg bomb out of an egg timer, strawberry laces and marshmallows (yeah, I really do need to get a life soon this is getting ridiculous!)

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I also went to the Range and got supplies to make French flag bunting (like you do). I just have to point out that the people who designed the layout of the Range are EVIl, it’s a migraine waiting to happen – yes, I was in bed for about two days after that experience!

Soph went all out with her baking, no soggy bottoms in this house!

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A great effort was made by all with costumes and character portrayals. You’d think we’d all been to RADA the performances that came out. I particularly liked Hayden and his Southern American/ deepest Devon farmer accent as Mike Bison.

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But the Oscar for leading woman (or man?) goes to Emma, analysing us all as Sigmond Fraud. Who’d expect a party and free therapy?

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I of course can’t divulge who was the murderer. All I can tell you is it couldn’t be me (Dame Barbara Carthorse) I’m a harmless romantic novelist! Besides if I tell you I’d have to kill you 😉

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Guess which one’s mine?

March4

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Shoot from the lip…

February26

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This weekend I headed out for cocktail’s with Soph and her friend Rosie. It turned out to be a poetry night at the bar that we had got comfy in. We had good seats (granny armchairs) so nothing was going to deter us!

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After a couple of ‘Blossoms’ (vodka, elderflower, lemon and ginger beer – not Sophie’s rabbit!) we were serenaded with poetry. One lady read a poem made up entirely from phrases used in the latest edition of the Betterware catalogue which was interesting. We were then asked by another poet to chant ‘milk circles cheese ring’ and similar such phrases back. Yes, several more cocktail’s were required before I could find my inner poet!

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So here we go (this has to be read gangster rap style):

Out with the girls having some laughs
Drinking cocktail’s with names wot were daft
Having a good giggle with Soph and Rosie
Our conversation so funny other people were being nosy

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Got a (relatively) new dress
Shame my hair’s still a mess
Must use the straighteners less
Anyway, I digress

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Poetry night was a bit random
So we drank cocktails with wild abandon
Had one too many ‘Clover Clubs’ – raspberry, lemon and gin
Poetry makes more sense with several cocktails in…side

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Yeah, wont give up my day job (if I had one) 😉

Duvet day :-(

February22

I’ve just had a really bad day and I’m really hoping it’s just the one. I have been sensible and rested today but I know it’s payback for all the fun I’ve had. Who wouldn’t get over excited about bird twitching?

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I have overdone it but when I feel well I get so excited I just want to do as much as possible. I’m always getting my wrists slapped by my consultant for doing this. In my defence yesterday was not my fault. I felt ok and I needed to get my guitar restrung as I had broken a string. I put the address of the nearest car park to the guitar shop into my satnav and headed off on my adventure. I just have to add that my satnav adventure the other day took me an hour and a half to NOT find the David Lloyd which is just ten minutes up the road off the motorway. The problem being that I had not used the satnav in years and it was set to ‘forbid motorways’ – you can see my problem! Also not knowing exactly where Sophie lived and having left my phone at her house was a tad problematic for getting back again 😉

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Anyway I digress. I found the car park but the entrance had been closed due to roadworks which caused a minor blip. I eventually got parked and wondered into the town holding my guitar, at the back of my mind knowing I wouldn’t last long as things were starting to wobble. I saw a Santander and thought I’d get some cash but there was no cash point. I popped in and the lady behind the counter must have thought I was some pissed homeless person busking. I explained that I was Ill and not from Exeter and she was SO kind. She got onto google and found where the guitar shop was and told me the shortest route; she even confirmed this with her colleagues whose ‘auntie’s cousin’s husbands’s son Dave’ worked there once. So I got there and got my guitar sorted, I have to say they were great there too! I got home in one piece really pleased with myself that I had managed it on my own with no ambulances being called.

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So although I feel pants now I can feel pleased with what I achieved and also happy that there are some really kind, thoughtful people around in this world that will help out a stranger no matter how drunk they appear.

Bird twitching

February21

Well I have had another new experience this week and no it didn’t involve rugby players before you start with the comments Reuben! I went bird watching and It was very entertaining. As we drove down to the estuary there were swarms and swarms of middle aged men with binoculars and huge lenses. They looked like paparazzi. I really thought Pippa Middleton must be mud wrestling with all the excitement brewing. It turned out it was for peak tide which is when you get the most number of birds (and not of the Kate Moss variety).

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A few minutes after getting there this ‘bubbly’ lady came up to Soph and I all excited as she never seen women her age bird watching (I’m quite sure we were a lot younger!). After getting her entire life story (with highlights from her bird watching adventures) she explained about a great place on the coast to go twitching. She told Soph that she could go bird watching and I could go SHOPPING! I was quite offended, I was carrying binoculars and everything (admittedly for someone else). Well we fell about laughing, how did she know that, I hadn’t even spoken? On that note, I feel an ASOS session coming on 😉

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On the illness front I seem to be doing quite well (touch wood) the change is clearly doing me good. I managed the bird watching which involved a short walk and there were no incidents. I still have to rest after doing activities but hey, at least I’m managing to do things that are more exciting than staying still on a bed! Lets hope this good patch lasts for while 🙂

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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