Still on that boat…

Strawberry blonde in a dizzy world!

Cabin Fever


It’s been a bit of a dull week. My vertigo has been bad as expected because I’m so exhausted during the day due to my insomnia. Tiredness always makes it really bad. My days have been spent trying to do activities that don’t make me more tired or bring on vertigo or don’t send me to sleep and make my chance of sleeping at night even less. So yes I’ve mainly been watching back to back episodes of Prison Break – must be trying to send me a sublime message! One day I forgot to watch Neighbours at lunchtime and actually felt excited that afternoon when I realised I had something to look forward to!

Luckily for me (not for her) mum’s not been sleeping too well either so it has become quite normal to get up at 2.30am and have a cuppa (Decaf!!). The withdrawal side effects have been improving apart from the shakes that kick in late afternoon and make me look like a recovering alcoholic.

I went to the Disability Advice Centre to get some help as having not worked for two and a half years I’m a tad broke. I’m not entitled to anything as I was deemed fit for work by a nurse even though she had never heard of my condition; in fact I had to tell her what category it would go under. My consultant, the leading expert in the country whose opinion is sought all over the world, was clearly wrong. I was too naive during the assessment as I thought it was so obvious how ill I was there would be no problem. What an idiot!! I have sent forms several times to them and they still claim I haven’t done it. I was so frustrated the other day I phoned up and had a go at poor ‘Gary’ who suggested I send them again. I suggested he get on a playground roundabout for about ten minutes and then get off and then see how productive he is on a computer. He was a bit more understanding then. I did ask him if he spent all day on the phone getting whinged at to which he laughed and said ‘yeah, pretty much’. Honestly it’s like a full time job trying to get it sorted. The ironic thing being the only reason I’m doing it is that I’m too sick to do a full time job. It’s madness!

It’s so insulting being treated like a skiver I would absolutely LOVE to work; I’m going out of my mind with boredom. My auntie offered me some work as she has lots of jobs to do on account of her being a caterer for weddings. During a period when my vertigo was more under control I decided to give it a go. I was genuinely really excited – sure it’s a bit of a demotion from my career, but it was a step in the right direction and my aunt is a good giggle and I enjoy cooking. I managed about two hours making toast…and then was really ill and had to go to bed, it ruined me for a good few days. On the bright side I’m now Melba Toast Queen – I hadn’t even heard of it before! I’m hoping to try again when things settle – I’m sure there’s a World of Toast out there I haven’t even heard of yet! Life in the fast lane! It’s so hard doing things so slowly and having to rest all the time -so yes I find it a little annoying when I’m treated like a skiving idiot by the Job Centre.

Clearly I needed some relaxation after this and I actually managed to get to my ‘Old People’s Yoga But Determined to Remain Bendy Class’ one evening. I laid there on the cold village hall floor where I was supposed to have an ‘empty mind’ (I’ve never understood how you manage this?)But was actually pondering my sanity at having risked life and limb in the icy snow to get there; I was freezing my ass off on the floor and all this for the bargain price of a tenner for the pleasure! Help was at hand though -the yoga teacher managed to let rip during the breathing exercises. So childish I know, but I couldn’t help but get the giggles, made much worse by knowing how immature I looked. My lip still hurts. I really do need to get out more!

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10 Comments to

“Cabin Fever”

  1. Avatar January 22nd, 2013 at 7:32 pm Snowy Says:

    Haha poor Gary and I love your yoga story – bet that happens ALL the time 🙂 Sorry about the benefits – that’s rubbish!! Hope they get it sorted soon – there are enough people taking it that shouldn’t that people like you who really need it should be the first in line!!

  2. Avatar January 23rd, 2013 at 4:44 pm Becky Says:

    Hi, just catching up on your blog. Yoga story – hilarious! Well I guess you know you’re really relaxed when you break wind freely like that! 😉

    Separately, sorry to hear the rubbish about benefits. How utterly ridiculous!! Good for you for challenign them though. I just found a link with some info about the instutute of Koch (Robert Koch, nothing rude) 😉 who are looking in to research into getting this recognised. Maybe they would welcome your experiences and knowledge, especially with your doctor background? I hope in some way it helps xx

  3. Avatar January 23rd, 2013 at 7:03 pm Susan Cartwright Says:

    Thanks Becky that’s really interesting. I’m seeing my consultant next week and as I seem to be getting nowhere fast I can ask him a few questions about that. Cheers, really appreciate your help, stay safe in the snow xx

  4. Avatar January 23rd, 2013 at 5:27 pm Claire B. Says:

    Do they not take into account the review board decision?

    Didnt someone fart in yoga not so long ago as well? Make sure you stay away from the baked beans otherwise you’ll be next!

  5. Avatar January 23rd, 2013 at 7:06 pm Susan Cartwright Says:

    Too right!!

  6. Avatar January 24th, 2013 at 7:12 am Marcus Says:

    No wonder the benefit system is so inefficient. There is a total lack of understanding and empathy. Result being you are forced to take up their time for longer than should be necessary costing more public money and make you feel horrendous. And there is no saving to DWP as they will backdate claim when finally goes through. We had a run in with the job centre a few years ago and they found it very inconvenient that lots of people were keeping them busy- sorry to inconvenience them in this recession.

  7. Avatar January 26th, 2013 at 6:49 am Susan Cartwright Says:

    Having spent 15 mins on hold pretty much everyday this week to then not even get anywhere is pretty frustrating. I think chaining myself to the local job centre’s railings is the next step, let’s face it I’m not exactly busy. May wait for the a warm spell first though 😉 That could make an interesting post!!

  8. Avatar January 29th, 2013 at 11:31 am Alice Says:

    You’ve made me smile again at the end of a long day! Love the yoga story!

    Can’t believe the bloody benefits system! When Dad was out of work a few years ago, he went on benefits but when he was invited to a job fayre abroad they stopped them despite mum being at home with us kids (not working either). If we wanted to keep receiving benefits while he was out of the country we were told that Mum had to wait for him to go then say that he’d left her and abandoned her with the kids so she’d be able to claim! Just ridiculous and doesn’t sound like anything has changed. Good luck and lots of love! Xx

  9. Avatar January 30th, 2013 at 5:07 pm Susan Cartwright Says:

    My god Alice that’s awful but it really does not surprise me! They have a way of making you feel like the Lowest of the low when you’re already feeling crap about things. I understand the country is in financial difficulty but why does that mean common sense goes out the window?

  10. Avatar January 31st, 2013 at 9:51 pm Cat Coyle Says:

    yeah you got to yoga! well done you. if nothing else you got a funny story out it! thankfully I haven’t had anything similar happen to me. enjoying the stories pal. hope you get the benefit situation sorted soon. can’t believe how hard you need to work for it xxx

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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 😉