Dizzy up the Girl...

Remembering Water, in The Architect's Brother

Ok, so it's about time I wrote a little about this bloody dizziness. A lot of friends and family have been really concerned on my behalf, which has been lovely but it's been quite hard to accurately explain to people what it actually feels like, at least from my perspective. I think everyone's been worried that's it's something more malicious than I'm letting on, so the purpose of this post is firstly to put people's minds at rest, and also perhaps to try to articulate some of the features of viral labyrinthitis, which is what I've been diagnosed with.

Viral labyrinthitis, if you've not heard of it before, is an inner ear infection which affects your balance, with the common physical symptoms being vertigo (dizziness) and nausea. Luckily in my case I've actually not had much nausea at all since the first time I started getting dizzy (about 3 or 4 weeks ago now). Back then I didn't actually think I was ill, I just felt spaced out and like I wasn't able to focus at work. The main feeling was a feeling of being on a boat, or sea legs as I sometimes call it. It feels as if the floor beneath you or walls around you are moving, even though in my case it doesn't often feel like things are swimming in front of my eyes, and I don't have blurred vision. Nowadays, I also occasionally feel as if my right ear is blocked slightly, and my head feels "full" if that makes sense? If I've spent too much of the day with visual stimuli e.g. e-mails, reading, typing (!), and TV, then I do feel a headache growing as the day goes on, and I might also feel a bit nauseous in the evening, but for the best part I don't feel as if I am a "sick person".

The video link below was made for the NHS by a long-term sufferer Rebecca, and this explains quite well what it feels like to have labyrinthitis, and how it can affect your life.

The first time I felt this dizzy, floor moving sensation, I just put it down to being in an old-ish building at work and thought that maybe the floorboards were a bit loose. But I also noticed that I was dropping things without reason - I'm quite clumsy normally, but just letting a glass of water drop out of your hands is a bit abnormal even for me. That first evening a few weeks ago I did feel really physically sick, but did not actually throw up, which in hindsight I'm really glad about.

Now that I've been told it's viral labyrinthitis, I'm so, so glad I've been spared the nausea for the most part. I've heard of family members and parents of close friends who've had it in a severe way - for instance, they can't move their head at all without throwing up. Thankfully I have not had that at all, although I did have a few distressing moments before I eventually got to the docs.

The second time I remember feeling strangely dizzy was at my friend's wedding in the Netherlands (see previous post). We were standing on some wooden decking in the courtyard outside the venue, and I just attributed the wobbly feeling to the wooden floor flexing and bending slightly beneath our weight, and for the best part of the day I felt mostly fine (albeit a little bit emotional, which I put down to hormones and the context of the wedding.) Perhaps the alcohol and hormones masked the symptoms, but who knows?

It was only when I went back to work on the Friday for Staff Development that I noticed I was feeling dizzy and wobbly pretty much constantly. During a tour of some new facilities for the Entry and Pre-Entry department (one of the few elements of work that I think are absolutely great), I had to lean up against some lockers to keep my balance, even though I didn't feel like I was likely to fall over, I just felt like I needed support and that perhaps not relying on my own legs would make the spinning sensation ease up. It was almost as if my legs didn't quite belong to me bizarrely. Later during an awards presentation everyone stood up to applaud the chair of the governors, and I had to sit down again immediately. It must have been the sudden movement but I felt myself get very hot almost instantaneously, and felt extremely lightheaded and weak, and bizarrely, I also felt tears well up in my eyes.

On that first day it did feel pretty disconcerting, but I couldn't think why I would suddenly want to cry for no reason, but I suppose subconsciously it must have been panic. In a weird way, I think the tears made me even more concerned, as I didn't feel like I was anxious or stressed about anything in particular, so I couldn't explain where they came from. When I finally decided to go home early, I had to sit still in the car for a good ten minutes to calm down before turning on the engine.

As my new surgery doesn't have a walk in emergency surgery session, I had to wait until Monday before seeing anyone. In the meantime I did a bit of my own research to try and figure out what it might be. The NHS Direct symptom checker was not particularly helpful as at first it seemed to suggest that I might be having a stroke (the questionnaire only asks you to indicate yes or no if you have any of the symptoms, and won't let you clarify which ones, or indicate on a scale how severe those symptoms are). But after a bit more research I was pretty convinced that it was something like Labyrinthitis and came across a really helpful website written by two long-term sufferers Emma and Isla. http://www.labyrinthitis.org.uk/

One of the most important things the website helped explain me to was not just how I was feeling physically  but how I was feeling emotionally. 

For someone like me who does everything at top speed, who walks and talks quickly, having to slow right down and do everything at a snail's pace, and in some cases do nothing at all, was unbelievably frustrating, and I think that's perhaps why I felt tearful at work. Depression is actually a very common feature of viral labyrinthitis, especially since because it is a viral illness there is not much you can do medically to make it go away. I have been medication to help the symptoms of vertigo and help prevent nausea, but I have to admit I've not noticed any let up in on the dizziness front.

One of the main things I find frustrating is not being able to cook. Normally I do the vast majority of the cooking in the house which I love (have I mentioned how much I love food?), but now standing up for long periods of time (we don't have a kitchen table where I can sit to prep food) increases the dizziness, but also there's the moving around the kitchen, reaching and bending to fetch ingredients from different cupboards, or check on something in the oven. As Rebecca mentioned in the video above, one of the worst things is bending your head downwards, so even looking at a pan on the hob can make the dizziness worse.

This obviously applies to other things besides cooking, like getting dressed, moving around the house, picking stuff up from the floor, and having showers. Me and my sister had a laugh about it when she came to help me work from home earlier on this week, as I jokingly asked her if she'd sit on the bed in my room and listen out for me in case I slipped over and 'brained myself' on the shower cubicle. I've had to learn how to pick stuff up from the floor by bending my knees and squatting rather than bending from my waist and back, and by not looking at whatever it is I want, but instead looking straight ahead and groping blindly until I find it. I feel a little bit like Ziyi Zhang playing a blind woman in House of Flying Daggers, or as if I'm a toy doll who's neck and waist won't bend like the rest of the body. It's awkward and I probably wouldn't want to do it in public, but at least it stops me tipping my head forward.

Not like I'm going out in public much. I find walking slowly so annoying (I was one of those people who "Liked" the Facebook group about hating being behind slow-walking people), and I also find that when I walk I want to find things I can loosely hold on to if need be, which makes me feel self-conscious. It's like being on an ice rink and wanting to hold on to the rails I suppose, except in the real world there isn't always something to hold on to. That's one of the main things that upsets me, is this feeling of vulnerability, and feeling a bit useless and dependent on other people and things.

As I said before I don't necessarily feel like I am a 'sick person'. I don't have a fever, and I don't feel shivery. I don't have a sore throat, or hacking cough, and I don't have red eyes or a snotty nose. My sense of smell and appetite pretty normal  - I even joked to my boyfriend that I was a bit sad not to have nausea as I could normally rely on being sick to help shift a few unwanted pounds. But in this instance I've eaten a fair bit of junk food when I'm home alone, and the lack of physical activity is certainly not going to help.

In general I feel fine - just dizzy, so anyone who is worrying please don't *smiley face* I am taking things slowly, so I'm not likely to collapse, or fall down the stairs, and the boyfriend and the rest of my family are really looking after me at home, so I'm not going to starve or anything like that!! I'm hopeful that this will sort itself out sooner or later (3 - 8 weeks is the average apparently, which does still feel like I long time to me). I don't feel ill (according to my narrow definition at least), just... incapable sometimes, with respect to how the dizziness affects your day-to-day life, but then no worrying I or anyone else does is going to help that.

So I hope you feel reassured that I'm not dying, and that it's just a blip. On one end of the spectrum I even at times feel a little like a fraud. Because I don't feel sick, and don't feel that I look or sound sick (despite my mother claiming I looked washed out - that's because I haven't worn make up in days Mum), I worry that some people (people at work in particular) might think I'm just skiving. Because it's something that is so interior, that is so invisible to the untrained eye, I worry that some people will think I'm just malingering or attention seeking, and I feel bad every time someone tells me to go to bed and rest, and offers to do shopping/cleaning for me, or just asks how I'm doing with a tone of serious concern in their voice. In the scale of things, I feel like this 'dizzy' problem is nothing compared to some stuff. I know of at least 3 people who have been diagnosed with some form of cancer in the past 6 months, two of whom are barely 40, one of whom is suffering from terrible chemo side effects, and one of whom has been given a matter of weeks to live. So in the scale of things, I feel bloody lucky.