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 guilt 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
