People often wonder about me. Why a perfectly 'normal' looking person doesn't work. I do look normal don't I? However, behind that 'normality' I have a disability. It's one that is very hard to understand when I tell you about it, so best given by way of the video below...
The disability is bilateral Oscillopsia. Basically, when I lost all my balance, I lost my built in 'image stabiliser'. The video shows you what it is like for me when I walk. If I bump into someone I know in the street, I will not recognise them until I stop and get everything in focus. As I'm deaf, I'm not likely to recognise them by sound.
In addition to the up and down movement image stabiliser that I've lost, I also have it from side to side. When I turn my head say from desk to computer to type a document, that constant movement would render me seasick quite quickly. I also have it in a forward and back movement as well, so if someone applies the brakes too often in a car, it can make me carsick. I also get carsick on long drives even when I drive.
Any movement that is repetitive can render me unwell. This includes everything, even simple everyday things can make me feel terrible.
I cope by breaking up my day. I never do the same thing for too long. I always make sure I sit down half way through and come back later to finish it. As long as I can keep my head absolutely still, I can do things for long periods of time, but anything where movement is involved - forget it! I have a stockpile of seasickness pills in my cabinet, but I try not to take them as they make me sleepy. I prefer to have all my faculties working at all times. I will only take them if I absolutely have to, at the times it is the worst.
I rarely talk about this. I don't see it as a illness, but as a weakness. I know I know, silly, but that's just the way I view it. However, in my recent hospital stay, after my ankle operation and I was in plaster, and unable to put weight on my foot, the nurse that was looking after me seemed to think I was being 'too cautious' when I refused to have a shower. The shower was a chub bath and I wouldn't use one even if I didn't have a plaster on for safety reasons. I realised then that the only way I'm going to make people understand is to show them a little video, and what better way than to send them to my blog.
This bilateral Oscillopsia is also the reason I am fairly accident prone. It's much easier to lose your balance when things are not stable for you, and the lack of a balance mechanism means that sometimes you don't realise you are actually falling, and by the time you do, it's too late to right yourself.
In the last 3 weeks, being on crutches after my tendon reattachment has been really trying. I've fallen once. But lost my balance many times, but fortunately been able to right myself by leaning on walls etc... The biggest frustration is not being able to bend down and pick things up while balancing on one leg. Many people take for granted that if they drop something, they can just bend down and pick it up. Picking something up is a mission for me when I have two legs to balance on, but at the moment, to pick something up off the floor is nigh impossible. One legged with no balance is simply dangerous.
Today, I just smashed a mug and a glass while trying to empty the dishwasher, and broken glass and crockery is all over the kitchen tiles. I don't DARE try and pick it all up as if I do, I have a high chance of falling over and then cutting myself. This means I have to have patience until I can jump on the first person that comes to the door, and ask for help!!
Even trying to make health providers understand why you need help is a mission. Usually I just give up. But being in plaster for the last 3 weeks, has made me come to realise that I do need people to understand more what it is like, and that I probably do need a bit more help than the average person who has the same operation just for simple safety reasons.
I didn't always have Oscillopsia, but over the years, it has got worse. Websites with information about this tell me that it gets better over time, but for me it's been the opposite. It's got worse and continues to do so. I wonder if it goes hand in hand with the vertigo that I get as well. But I won't go into that. Let's just understand my bilateral Oscillopsia today. I would rather bury the rest in a hole and not talk about it ever!
If you have any questions, please feel free to comment and ask in the blog, I'm only too happy to answer them as long as I can!