Dizziversary

This week is two years since I began feeling dizzy – later diagnosed as the early symptoms of a Vestibular Dysfunction.

“A vestibule what??”

Exactly! Not many people know about this condition, but actually it’s not that rare. I started writing about my experiences and soon connected with many others who have had some sort of Vestibular problem.

So here’s my dizzy story, and at the end of the blog, details of where to find more info and help, if you or someone you know experience something similar.


In the beginning

I first remember getting a dizzy feeling while in the shower one morning. I had to hold the walls to finish rinsing my hair. It was a really weird sensation. But then it faded and I carried on. This happened a few more times over a couple of weeks, at work or at home, making me feel like I needed to sit quietly until the dizzy spell passed.

But one day at work it hit much harder. I was in a meeting and I just couldn’t concentrate on what was being said. The room stared spinning, but neither sitting or laying down made the symptoms ease.

About 15 years earlier I’d had Labyrinthitis – an inner ear infection that impacts the way your normal balance system works, using your ears. Labyrinthitis feels like you’re in a washing machine – and I remembered, this felt similar.

I went to doctor, who suspected it was the same issue, even though I didn’t have a visible ear infection this time. But two weeks of tablets later, the symptoms were getting worse not better.

Symptoms

Some people say it feels like being on a boat, or like being permanently drunk. I would wake up feeling like I’d had about three glasses of wine – a bit floaty and not too confident in myself. I’d be able to walk, but not too quickly, and perhaps have my hands ready to stop myself from falling to one side. As the day went on, it was like adding several shots of tequila. The more I did, the worse I would feel.

Lots of people joke that feeling permanently drunk must be fantastic – but much less enjoyable if you’re having the hangover at the same time. At its worst, it’s like being in a washing machine or on the Waltzers. I’d feel nauseous in my head and stick to my stomach, and even when lying down with my eyes shut, it’s impossible to get off the ride.

I developed back and neck problems from walking badly and being constantly tense. It’s a massive mental challenge too. I couldn’t work or go to many social occasions – and I hated it. It can make you very anxious and scared to go out. I’ve heard of others becoming quite reclusive because they are scared in case they fall and hurt themselves, or worried that people will judge them for ‘drunken behaviour’. It’s also very difficult to explain to people that you have an illness that they just don’t understand.  You either have to go into great detail or just belittle it by saying “I get a bit dizzy”, and quickly move on.

Cause and effect

Vestibular issues can happen on their own or as a result of something else. I have met with people who have had a brain tumour; brain haemorrhage; a stoke; Menniere’s desease and Vestibular Migraine. All of these can lead to similar dizzy symptoms at some stage, but of course have other causes and very different treatment!!

My physio explained the impacts on my brain in a way that helped me understand why certain things triggered my symptoms more than others. Where our brains normally scan our surroundings and ‘orientate’ to judge space and distance, my brain will respond to movement differently, and become disorientated – whether that is me moving around, or things moving around me. So if I were to sit still, in a room where nothing else was moving, my brain would know that I am safe and I could feel fine. But if I move my head, walk, spend time in a busy place or even watch ‘action’ on TV, my brain would get disoriented and confused, and panic, causing the dizziness.

The same goes for ‘scanning’ with my eyes. So reading or shopping (looking around for things) can completely throw me. Even now. I hate spending time in enclosed spaces, long corridors or low ceilings. I’ve learned that when moving through a crowd or in a vehicle, I need to keep my head up and eyes looking around, so that my brain can ‘see’ and take in as much information as possible, even though the dizziness makes me want to close my eyes or look at the floor. Now I naturally, almost unconsciously, look for the exits and move towards windows.

Diagnosis

It took three GP appointments to get a referral for relevant tests. I later learned that these conditions are still not widely understood or easy to diagnose.

I was sent for an MRI brain scan to check for signs of a tumour, haermorage, stroke, MS and god know what else. An MRI takes about 40 minutes and you need to be perfectly still. Plenty of time to start thinking ‘what if’ and start mentally writing your will and funeral plans!

Luckily my consultant was able to rule out all of those possibilities, which is actually a very nice health check to have had. He then referred me to a Neuro Physiotherapist (who knew they existed?) and an Ear Specialist who later discovered that my earlier episode of Labyrinthitis was probably the cause of this later vestibular illness.

Damage from all those years ago caused my brain to try to work around the problem, so I learned to balance without using my ears, becoming more dependent on my eyes and incorrect body movement. But as time went on this work-around no longer worke, and my brain went into melt down and became totally disorientated, sending panic signals that I wasn’t ‘safe’.

Getting treatment

At first I was given tablets to help with the nausea but I actually felt worse. Having read about other people’s negative experiences with various long term medication I’m incredibly grateful that my treatment was physio based.

Much like other types of physio, this treatment helps you to retrain your body and brain to work properly together. I’ve had exercises to train effective eye movement, muscle flexibility and balancing, often with my eyes closed to make my brain less dependent on them.

The main benefit for me was education – I now understand how my Vestibular system works and why mine stopped working. I understand what’s likely to be a trigger, which means I can avoid certain activities and I know when I need to rest and let my brain catch up.

Living with long term symptoms

It’s now two years on, and one year since I started to feel ‘better’. And although better is correct description, it’s not cured. I will probably always have symptoms. I feel them coming about 3 or 4 times a week and that’s a warning to look after myself. If I don’t, I end up back on the Walzers.

But amazingly, I have been able to do most things I would have done before, including go on roller coasters! At first I didn’t even dare to dream that I’d be able to do that ever again.

My motto is “I can do anything, but I can’t do everything.”

  • I can go to a concert with a big crowd – but I’ll need space and quiet time before and after to rest
  • I can drink alcohol – but not much! It’s like everything I drink is double strength
  • I can work hard, go to meetings and work at a screen – but I need very regular breaks
  • I can go shopping – but in small doses, and I avoid card shops and places like WHSmiths where the aisles are high and the lighting is just ‘wrong’. Hard to define, I’ve just learned from experience!

As long as I’m sensible and know my limits it appears that I’m living a totally normal life.

Mentally, it’s been a tougher ride. I had to accept the advice that “you may only ever get to 80% of what you could do before”. For a long time that made me incredibly sad, very angry and confused. How exactly do you cut down everything you once did by 20%?! I work, I have a family, I had a very full life – what do you give up?

Ultimately that’s what I’ve had to work out over time. I’ve cut down my working hours (that was a massive decision) and generally had to prioritise what I do, and just let some things go.

That’s why I started writing Unbalanced Woman blogs – a sort of therapy for me to work through how difficult it was to find a work / life / family balance. And then people started to tell me that they feel the same no matter what their situation.

So the real learn for me, is that even before I was poorly, I was always Unbalanced – just not literally! Many people feel they could do with better Life Balance. My illness just forced me to look at mine differently. And I’m glad I did. I’m proud of myself for managing to find a way back to a ‘full life’ – I just have a different definition of ‘full’ now!


More information and help

[TV Voiceover…] If you have been affected by any of the issues covered is this blog, you may find this website useful:

http://vestibular.org/understanding-vestibular-disorder

I’m definitely not qualified to give any medical advice, so everything in here is just my own experience!

If you are regularly feeling dizzy over a long period, I recommend asking for help from a GP. Remember that these dysfunctions are difficult to diagnose, so don’t give up. Keep pushing for help, and don’t just rely on taking a medication that may only mask the symptoms.

Forums and support groups: (These are private groups you can ask to join. I can’t provide links, so just search the names on Facebook)

 

#LiterallyUnbalanced. #Vestibular

Is part-time work a full-time pain in the arse?

Last year I was having a really tough time with my health and knew something had to give (I wrote a blog at that time called Literally Unbalanced if you want to know why). Eventually I talked to my boss about options to either work more flexibly or reduce my hours. Honestly, I wasn’t sure it could work. People who work part time seem to be just as knackered as people who don’t. Was I pinning my hopes on a Work vs Life balance myth?

Before I started I had loads of questions – some that people were able to help me with, and some that I’ve had to learn for myself. So I’ve written about my experience to see if this helps anyone else who’s trying to make a similar decision.

I know we all have different jobs, hours and employers’ rules, so to set the scene, I do a traditional nine-to-five office type of role, for a big company, and have a fantastic boss who is open to flexible working. Yes, I know, I’m blooming lucky!!

I wanted to take Monday as a non-working day, so I trialled two different options:

  1. Full time flexible working – working longer hours Tuesday to Friday
  2. Part time – reducing my hours by 20% to four normal length days – called a ‘0.8’

Here’s what I worried about / learned…

I’ll have less money

Let’s cut to the chase – this is hard to accept. If you reduce your hours you reduce your pay – no shit Sherlock, of course you do. Of course you should. But that’s why so many of us try to flex our hours rather than cut them.

If you usually work a five day week and are considering dropping to four or three days, dropping 20% or 40% of your salary is VERY hard to swallow. And let’s just make it a bit worse… if you have a job that gets any kind of bonus, performance pay or profit share, these will also be pro-rata rates. That sucks, and you have to suck it up.

I’ll get fewer holidays

Yep. Just like pay, holidays are pro-rata. If you go part time you get a percentage of holidays cut. You may get even less than you think because you are entitled to fewer Bank Holidays too. If for example, you normally get 27 days leave and 8 days Bank holidays = 35 days total, this whole amount could reduce by 20% (or whatever cut you take).

If you choose flexible full-time pattern, and work longer days on your working days, your company will probably calculate your holidays in hours, and each working day you take as holiday is equivalent to the number of hours you would normally work that day.

Of course, you ARE getting more days off by taking a non-working day – so quit moaning! Just ask for help to calculate your allowance, so you know what you’re dealing with.

I’ll probably end up working longer hours even if I take a pay cut

This is very possible unless you are SUPER strict with your time. It’s another reason I trialled flexible working first. Unless you are clear on exactly how your workload will reduce, you will end up trying to squeeze the same work into fewer hours. And unless you are a magician, or were previously a massive slacker taking two-hour lunch breaks without anyone noticing, that’s impossible.

Consider this when looking at your workload: an hour-long meeting still last an hour, you don’t get to attend 80% of it. Same for training, appraisals and administrative tasks. All these will still need to be completed in your working hours and will take the same amount of time whether you work full time or part time. So if you are part time, the hours you have available to do your actual work is even less that you think. Discuss this with your boss and wider team.

How will my hours impact the rest of my team?

I needed to discuss that too. For example, if I need to be involved in meetings or decisions about projects I work on, does that mean that people need to wait for me to return to work? Or can someone take responsibility on my non-working day?

If someone else is going to job-share with you on some of your work, you need to build up trust with each-other and set some ground rules. Otherwise you could end up reversing decisions and pissing people off.

I’ll always need to ‘catch up’

Yep – and this is the hardest part for me. Every Tuesday I arrive to a full inbox and need at least an hour to get organised. If you miss a meeting, someone needs to update you. Even tiny, seemingly trivial adjustments can feel significant, like the fact that everyone has already discussed their weekends, and moved on. It’s not the start of the week for anyone else. They are already at full speed while I’m just getting going.

I always worried that people wouldn’t want to have to repeat conversations or ‘waste time’ helping me catch up, but actually people have been really good, and don’t seem to mind. Or perhaps they just bitch behind my back… hmmm.

Which are the best days to work / not work?

The decision for me was to do with when there’s the least impact at work. I looked at when meeting happen, when deadlines hit and who else was in or out of the office. 

Monday was the best fit for work, plus it fits well with childcare plans I can make, and (bonus) I realised later, actually works out well for my holiday entitlement – I get more options for using my bank holiday allocation rather than always having to take the set bank holidays as well as another chosen non-working day. It’s complicated, but I promise it’s true. 

I’ll need to work harder to balance the inconvenience I cause

I think this is a common worry, and most flexible workers probably do over compensate a little. The key for me was to show that it is a ‘give and take’ relationship, so if there’s an IMPORTANT meeting or training day on a Monday, I will make every effort swap my non-working day to another day that same week.

We made an agreement that it would be a full-day swap, because it is not acceptable to interrupt my non-working day to ‘just attend this one meeting’ for an hour. My non-working day is exactly that. Hands off! We also agreed that I would need at least one week’s notice to give me enough time to flex my child care arrangements, or whatever is required.

In reality, that has only happened twice and I’ve had at least three weeks notice each time. The agreement means that we only prioritised the meetings that I REALLY need to attend. The rest go ahead without me.

I’ll have to be more efficient

Yes, and actually that’s a good thing. I am more efficient. Most of the time. The ticking clock makes me prioritise. I reckon at least three weeks out of every four, I think, “This week I’ll have to do a bit of work on my day off or I’ll never catch up”, but then I remember that I created that non-working (non-paid) time for a reason. And I owe it to myself to stick to it. Prioritise til it hurts!

Is it worth it?

Hell yes! You probably wont even be thinking about making a change unless you have something that’s really important to you. For me that was my health, for others it’s family. Whatever your reason, you have to make sure you stick to the plan that you make, and reap the benefits.

Monday is my rest day, it’s when I let the world slow down. It was so tempting to fill it with my to do list, or shopping, or chores or DIY. But I don’t – I rest. Because that’s what I need. That’s why I did it.

For others it’s time with their children, so they have to make sure they spend time with their children, and don’t fall into ‘I’ll just check my emails’. Unless it’s part of your agreement that you’ll be available, PUT THE WORK PHONE DOWN!

(..except for checking to see if you’ve won the work-team lottery, and if you don’t need to go into work at all tomorrow.)

So… are you wondering which option I chose?

Flexible working was great, but for me the longer days were just too exhausting. I needed to do less, not just squeeze more at other times. So it’s a pay cut, but better health – and I honestly couldn’t be happier. My boss and colleagues are superstars and I am so grateful and even more dedicated to my job. There are days when it’s hard to keep up, but every Sunday night, when I see the usual Facebook memes about Monday mornings, I have a little smile to myself and think “That’s not me, anymore”.

What a smug bitch I am! Poorer, but smug.

(P.S. I’m still Unbalanced though – aren’t we all?)

————————————————————————

Have you made the decision to flex or go part time? Or are you undecided? I’d love to hear your experiences.

Also check out Mother Pukka on Facebook and Instagram, who is leading a fantastic #FlexAppeal campaign to encourage more businesses to offer flexible working opportunities. She has some fantastic advice on how to broach the subject with your boss.

#worklifebalance #flexappeal #unbalanced #literallyunbalanced

Frankly my dear….

I did a Step class today and I was terrible. Really terrible. Out of time, sweaty, noisy breathing, a mess. But do you know what, I didn’t care. I genuinely didn’t give a toss if people looked at me, laughed at me or felt sorry for me. It made me realise that I have grown a confidence, a tougher skin that allows me to do things I want, whether I’m good at them or not. 

I’ve always said that as a mother, my one wish for my child is confidence. I want him to feel that he can have a go at anything he wants, and not be held back by fear of what others think. So I suppose I need to make sure he has at least one role model for that. 

I’ve wanted to do a Step class again for a long time, but as it’s been 20 years since I last did one (are they now classed as Vintage aerobics classes?), I was a little worried about my ability. This week I finally bit the bullet and booked in. 

Everyone had their place, and I was the new girl so I was placed in the only gap – right at the front of the class, and it felt like my white T-shirt was the brightest thing in the room. Not for long though, that quickly became my face. 

But I had a weird sort of muscle memory that told me ‘you can do this, you’ve got the beat and it’s fun. Do the hard versions, add the jumps… yes girl, pump up the actual jam!!’. 

My confidence was growing. 

However muscle memory soon became muscle screams when my calves remembered that they haven’t been pulled like this for two decades, and you know, what the fuck was I thinking?

My lungs and heart also joined in, telling me in no uncertain terms, “You’re over 40, you’ve done practically nothing since you got your dizzy disease, I think we might die!”

Brain: “Erm yes, hello! Dizzy brain here, wondering if you’re even contemplating those weird jumpy spins the teacher is adding in. Just a thought… if you do that I’m telling knees to give way and your sizable arse will soon be crashing right through that step. Understand?”

My confidence was dropping dramatically. 

Teachers always tell you that you can stick with the ‘easy version’ if you want to, but 30 minutes in and I was struggling with even that. This is the moment I remembered that I can do what I want. I don’t have to keep up with the group, it doesn’t matter if I’m on top of my step with my arms in the air, when everyone else is doing a complicated squat/ twist combo on the floor. I’m here to enjoy myself. And so I did. 

Who cares if I’m at the front? Who cares if everyone is looking in my direction and I’m clearly shit at this? Who cares if my tits and other wobbly bits are having their own disco? The music was great, I was pleased to be taking part and I was filled with memories of being young and fit and loving life. 

When I stopped giving a damn I had such a great time. I smiled, I sang along to Rihanna and I made up my own moves. And afterwards I told the teacher that I loved it and will be back next week, and she looked pleased. I think. 

Not giving a damn is brilliant. Enjoying something you’re not good at is still possible. Perhaps I’ll get better, perhaps I won’t. Perhaps I’ll be known as ‘that woman who can’t really do it but always laughs’. Perhaps I’ll be in agony tomorrow and regret ever going. 

I’m not going to worry about it. Right now I’m still smiling. 

Therapy

Question: What do you do when your Head-voice and your Heart-voice are at war in your head? When one is saying… ‘Do it, do it!’ and the other is saying “You stupid fuckwit of a woman – don’t even think about it!”

Answer: Get yourself a therapist

This one is hard to write. I’ve been putting it off for a while. But as I started this blog as a sort of therapy, I always promised myself that I’d write honestly about the ACTUAL therapy I’ve had this year. So here goes….

When I became unwell last year, the hardest part of the initial journey was that I didn’t know what was wrong with me. Lying in an MRI scanner and listening to the mechanical beeps for an hour, I was mentally writing my will and thinking about leaving my 5 year old boy without a mum. But once diagnosed (with a Vestibular Dysfuction*) I was able to concentrate on getting physically better. Knowledge is power as they say. Once I knew what I was dealing with, I could fight it.

*Vestibular Dysfuction – when the brain can’t properly orientate and you feel constantly dizzy, sea-sick and can only move about slowly, acting as if you are seriously drunk – without actually drinking. It’s shit!

For the next six months I had a goal, a plan and a belief that I could return to ‘normal’. I made steady progress through Neuro Physio (re-training the brain to balance) and I could cope. I was absolutely determined to become me again, and be able to do everything I previously could.

Having that vision and that belief was, I’m sure, a contributor to me making such great progress.

So when I had a relapse in February and started getting worse again, I hit a new low – possibly worse than my first MRI, because I was back to having no knowledge. Now I was wondering if this was going to be an on-going cycle – did I have to accept that I may never get better? It hit me really hard. My Neuro Physio told me that I needed to come to terms with the fact that this could be it. Even with all the brain training, I may only ever be able to do 80% of what I could before. The idea of living with this illness forever was just heart breaking. The idea of not being able to do everything that I could normally do, and everything I had planned for my life, was overwhelming.

One thought kept coming back to me – Disney Land. It’s been my dream for most of my life, and I’ve promised myself that I will go as soon as my boy is tall enough to go on all the big rides.

therapy-mickey
Mickey became a symbol of everything I was losing

I couldn’t accept it. Mentally, I just couldn’t cope. Micky Mouse became a symbol of everything I was losing. The me I was losing. The me my family was losing and the limits that would put on them too. I lost my will to fight, and just became sad and angry. I didn’t know whether I needed to keep fighting to get better, or to accept defeat and make new plans – ones that wouldn’t ever involve Micky fucking Mouse. (I also started swearing a lot more, and taking my anger out on fictional mice!)

I realised that I needed help. My Neuro Physiotherapist was a wonderful woman helping me retrain my brain and make physical brain progress, but I needed help with the emotional side of my brain too. I needed to sort out how to THINK – how to DECIDE – how to KEEP GOING mentally.

So a made an appointment with a Counselling therapist, and it’s possibly the best thing I ever did. To be honest, for the first 3 sessions, I really wasn’t sure! I felt that she didn’t understand the problem. But to be fair to her, it was ME that didn’t understand my own emotions. I wasn’t giving her the right details. I was still too angry at my situation. I was linking my physical condition and my mental state too closely together, I couldn’t separate them – when I felt physically poorly I was sad, and when I felt physically OK I felt… well, OK, but overwhelmingly frustrated by my limitations.

The regular fight in my head was:

Physical Brain: I’m so tired. The more your push me, the more I need to rest. You can’t do everything you used to – accept it; do less; enjoy the quieter life. Let’s sit on the sofa and have a brew.

Emotional Brain: But that’s not who I AM! I’m missing out on LIFE. I don’t enjoy quiet, I NEED the variety, I need the party, I need to be who I WAS. 

My Emotional Brain thinks in shouty capitals a lot!

The break-through happened in my therapy session after I did the worse thing I could have possibly done as a person with balance issues – I went on a roller coaster. It was definitely an act of rebellion. I knew it was an absolutely stupid risk that could totally fuck up all the neuro-physio progress that I’d made. But I also felt that I was leading a restricted life, and it was breaking my heart. It was head versus heart, or my Physical Brain versus my Emotional Brain, and Emotional Brain was now calling the shots. It wanted to know what would happen, like a child pushing boundaries… I needed to know if the Disney dream was ever going to be achievable. 

I picked a day when all the circumstances were right – I was feeling reasonably good, I had people with me who could look after me if I crashed into a spinning nausea, I had the next 3 days off work if I needed to recuperate. I was still scared shitless though! Physical and Emotional brains were battling in my head as I queued up:

EB: It’s the Dora the Explorer roller coaster, it’s fine for a 6 year old – how bad can it be?

PB: You absolutely crazy fuckwit of a woman – there’s a sign that says ‘Not suitable for people with motion sickness’ – that’s an understatement for what you have!

But because I’m either feistily determined or stupidly stubborn (you can decide which), I did it. And it wasn’t at all as bad as I expected. So… I went on three more, each progressively bigger and faster.

I’d love to say that was the moment when I realised I was better, but oh no, I just got the consequences later. Somehow the adrenaline must have kept me going, but later that day I was crying, and the next day I paid the price properly. I felt awful. I could hardly move off the sofa. I thought I’d broken myself and I had a new reason to be angry – at myself – for being a crazy fuckwit of a woman (PB: Well, I told you, didn’t I?!) However, by the next day I felt a lot better, and the day after that, better again (EB: Ha. I knew it -it was worth the risk)

And this is where my therapist, Jeanette, comes in. She helped me realise that instead of being a straight battle between Physical and Emotional thoughts, I’d rather cleverly brought in a third voice in my head – ‘Intellectual Brain’. IB was the one who made sure I took the risk at the right time, considered the consequences, and made sure I was ready. It sounds so simple, but she was right. She helped me to think about other times I’d used this third voice to make decisions, and that this was the voice I had learned to trust. I needed to listen to them all, but IB was like the mediator.

This was my turning point. I started to feel more positive about making decisions, taking risks, testing my physical limits in a sensible way, and keep my emotional side happy that I was making progress.

When Jeanette and I booked our last session I said that I wanted to do some drawings as a way of remembering what I’d learned, and to help me easily recall the concepts of balancing my physical, emotional and intellectual voices.

This is what I drew…

therapy-drawings

… and what it means:

1. I need to stop looking back at who I was, and understand who I am now, and what I’m capable off. Being able to do 80% of what I could before may be true, but are there new things I can do too? If I’d lost a leg, I wouldn’t try to grow it back! I’d work out how to live the best life I could with one leg.

2. My roller coaster rebellion taught me how to push my physical limits to allow me to have fun, but in a safe way.

3. I had felt restricted by my illness, like I had tethers holding me back. Jeanette helped me to see those more as a harness, which helped to keep me safe. And when I was seeking to push the boundaries I was using intellect to ‘measure’ how far I could go.

4. I finally accepted that resting is not lazy – it’s essential. I can still do almost anything I want to as long as I accept that my body will pay the consequences, and I make time before and after to give it chance to do that.

Will I get to Disney Land one day? Yes, I absolutely will. Maybe not for a while yet, but I am still a determined / stubborn bitch, and I will not give up that dream. I know that it’s possible, as long as I plan ahead, take sensible risks and make time for the consequences. 

Mickey, I’m coming to get you!

(Thank you Jeanette)

Literally Unbalanced

Hypothetical question: Due to illness you are told that you need to do less and rest more, you can probably only manage 80% of what you did before the illness. Would you:

  • A. Cut down your work hours, and therefore your salary
  • B. Spend the weekend resting at the expense of family time
  • C. Make like an ostrich, stick your head in the sand and pretend you can still be Wonder Woman (until you collapse).

This is the question I’m currently battling with, and the reason I started writing as Unbalanced Woman. It’s become a sort of therapy – a way to get thoughts out of my head and make sense of them. A way to accept that I’m not Wonder Woman and stop (try to stop) feeling guilty about it.

(If you’re interested in what’s wrong with me you can read What’s wrong with the miserable bitch anyway? below – but I’m giving you the option to skip the moaning parts and get straight to the point)

Here’s the point… Illness or not, do lots of women battle with this conundrum? I know I did before I was poorly. I can name so many Wonder Women in my life who struggle to manage everything they want to do, think they have to do, feel they don’t have choices. Is this part of the female make up?

This is probably illustrating that I have so far been attempting Option C – refusing to admit that I am not Wonder Woman. Of course I covet her figure, her graceful running ability and her sparkly knickers. Who doesn’t? But Wonder Woman is also a Super Hero. She can sort out the world, do the right thing, make everything better, and of course with glossy hair and full make-up every minute of every day. She’s like a modern day Facebook thread. You’d never see her posting photos of her losing the battle with the bad guys because she’s got a phone in one hand, a child on her hip and wearing old, elasticated-waist pants because her lycra body suit is still in the wash.

Well this Wonder Woman is admitting defeat. I’ve tried. God I’ve really tried. But I’m knackered. I’m fucked. I’m crying. Is this the point where something has to give? But again…. what?

I still can’t shake the feeling that being poorly is an ‘excuse’. That I need to get over it. People talk about ‘invisible illness’ being so hard to explain to others, but actually it’s so hard to explain to myself. I have got into a habit of saying “Last year I got dizzy. I still get a bit tired some days” – soft, non-threatening words to gloss over a problem and move on.

My Neuro Physiotherapist (who knew they even exist?) is a wonderful lady with a heart of gold, a wicked sense of humour and some hard truths. Her tough love is just what I’ve needed. She says the only way I will face up to what’s really happening is if I start being honest about it. She has urged me to start to tell people that I’ve had, and I quote, “a horrendous brain dysfunction” and actually also makes me say “not had, but have” – present tense, because – and this is the hard bit – I’m not better. I’m significantly better than I was a year ago, but I’m not fully ‘recovered’. I might never be.

That shit is hard to say because it’s hard to accept. If I say it, it means I believe it. It means it’s true.

I’m trying it out, I’ve said it to a few people but it’s so dramatic and it turns into a longer, more invasive talk. Whilst I’m a confident person, this type of attention actually makes me squirm and I just want to go back to being a Wonder Woman impersonator, using my metalic wristbands to deflect any uncomfortable sympathy.

But again it makes me think… we all do it. All the time. A woman who feels like she should have cartoon-style match sticks holding her eye lids open will typically say “Yes, I’m fine. Just a bit tired. Anyway how are you, you look amazing!” and then order a triple shot coffee and anything with sugar in it.

Deflect. Cope. Crack on. (Crack up?)

Can I change? I think I have to. I’m told by everyone that my health comes first. Perhaps I need to listen. But why didn’t I listen before I became ill? Why don’t any of us?

I’m really trying to lift my head out of the sand. Perhaps I can do it bit by bit – be an ostrich but wearing sparkly knickers and shiny wristbands.

Now there’s a picture I like. Can someone draw that for me? I think that would help!

x

What’s wrong with the miserable bitch anyway?…..
I year ago I started feeling dizzy. Just for a few minutes here and there. I remember the first instance was in the shower and I had to hold the walls to finish getting washed. It was a really weird sensation.

As the days and weeks went on it happened more and more often so I went to the doctor. Assured that dizziness was almost always an ear infection or low blood pressure I continued putting up with it. But when I got worse and worse and it became clear that it was neither. A couple of MRI scans and visits to a Neuro Consultant, I was diagnosed with a ‘Vestibular Dysfunction’ which means that my brain had forgotten how to balance properly and had to work much harder to keep me upright.

It’s relatively new in terms of understanding it, which is why it’s hard to explain what’s wrong and when I need help. But I’ll try.

Where our brains normally scan our surroundings and ‘orientate’ to judge space and distance, my brain will respond to all movements by becoming disorientated – whether that is me moving, or things moving around me. So I could sit still, in an room where nothing else was moving and feel fine. But if I walk, go to a busy place or even watch ‘action’ on TV, my brain gets confused.

The same for ‘scanning’ with my eyes. So reading and shopping (looking around for things) can completely throw me. Even now.

In the past I have described my symptoms as like being permanently drunk. At my worst I would wake up feeling like I’d had about three glasses of wine – a bit floaty and not too confident in myself. I’d be able to walk, but not too quickly, and certainly not drive. As the day went on, it was like adding several shots of tequila – feeling like I should sit down and be looked after until someone could take me home and put me to bed. At worst, it’s like being in a washing machine or on the waltzers and even when lying down with my eyes shut, I can’t get off the ride.

Lots of people said that feeling permanently drunk must feel fantastic – cheap date etc, but it’s also like having a hangover at the same time. And sometimes I will look like I’ve been drinking – I’ll walk unsteadily, needing to hold on to things. I’ve heard of others becoming quite reclusive because they are scared to be in pubic in case they fall or people judge them for daytime drunken behaviour.

I considered wearing a T-shirt saying “I’m not a drunk, I’ve got a vestibular dysfunction”, but no one knows what that means anyway.

I’ve been very lucky to be referred to an expert Consultant and Neurological Physio who have helped me to retrain my brain, eyes and vestibular system to balance me again. I have great understanding of my triggers which means I can avoid certain activities and I know when I need to rest.

As I say, I’m not recovered, but I’m doing really well and I’m incredibly grateful for the progress I’ve made. I know there are many, many others who have not had the same support and have to cope with life on long term medication just to manage the nausea.

TV Voiceover… If you have been affected by any of the issues covered is this blog, you may find this website useful:
http://vestibular.org/understanding-vestibular-disorder