Hi.
Welcome and thanks for visiting.
I guess the most pressing question for any new blog to answer is also a pretty big one: Why am I here?
The answer to that question, for this blog at least, is simple:
I am a stay at home dad and I also have Meniere's disease. So I thought I'd talk about it.
Incidentally, if you want to know why YOU exist, I can't help you there. For the most part I'm more interested in the hows than I am in the whys. Do we even need a reason anyway?
Sorry, that's way too heavy a topic to get into this early on. Forget I said anything and let's get back to the point of this blog.
Now, I'll admit that 'stay at home dad with Meniere's' is a bit of a niche market. You won't walk into too many gift shops and see a novelty mug saying "I may get rotational vertigo, but at least my parenting skills remain effective". If nothing else, that's not catchy at all. Plus it would be a freaking huge mug to fit all that text on it. Or you'd have to use a tiny font and no one could read it. What a stupid idea for a novelty mug. What the hell is wrong with you?
Mugs aside, it's my niche. It's what I've come to know. I've always thought that it would be a good idea to add another voice to what is very much a misunderstood medical condition. So here it is.
I think it's important for people new to the condition to know that you can live a great life with Meniere's. It's important for the people around them to know that this isn't a joke. It's serious stuff.
Besides watching as Meniere's disease is wiped from the face of the Earth in my lifetime, there are a couple of things I'd like to achieve. One is for everyone who has been diagnosed lately to know a few things. So I'll say them now before you lose interest and close this page:
You are not invisible.
Your suffering is real. It is understood and acknowledged by many. Including me. Don't let anyone ever trivialise your symptoms because they aren't on the surface. Everyone who has Meniere's goes through this experience, often with people they should be able to trust, and it's wrong.
Many brilliant people (although maybe not enough... it's never enough) are working to make you feel better. They may not all be pulling in the same direction right now but they're working hard and learning more each day.
You have an immense amount to contribute. Your life is still yours. It's your choice as to how you face each day, and every day is an opportunity to achieve something positive, whether it's something grand or just getting out of bed.
Can I also suggest that you don't spend all your time thinking about Meniere's? I think I can suggest it, this is my blog after all.
Find whatever positive outlet you have in life and squeeze that mother like it's full of lasagne. Or whatever it is you like to eat... I made lasagne this week, if you couldn't tell. Extra cheese because shut up, I want it.
And no, I'm not just being a condescending wanker. Honest! Ok, I probably am, I have a history of being a bit of a tool.
But everything I said is still true and I remind myself of it when I feel sick and sorry for myself.
Now that I've put on my prettiest floral blouse and sung kumbaya to you in a faltering falsetto, I'll tell you a bit about myself.
I'm in my late 30s. I have a two year old son, a seven month old daughter and a magnificent wife, all of whom I adore completely and without question. I'm at home while my wife works, so there's that to talk about.
I'm also hopeful of commencing a new treatment for Meniere's disease in the near future and have established a gofundme page to help raise a bit of money to get that particular little ball rolling:
http://www.gofundme.com/bigr7f0
People have been extraordinarily generous to us and we are very, very grateful. This blog will also serve to keep the page's donors updated on my progress. It's the very least we can do.
When I had the idea for this blog I thought I'd include a summary of Meniere's disease; its history, symptoms and so on. But you know what? Bugger that. It makes you violently dizzy, you lose hearing, you get tinnitus and your ears feels full. Your can also get brain fog, nystagmus (eyes moving uncontrollably), drop attacks where you simply fall to the floor, and others. Beyond that, you can use Google. There's a fair chance you used it to find me. The explanations you'll find out there can be infinitely better than anything I can come up with. I'm just a dumb guy who gets dizzy and says "I beg your pardon?" a lot.
Note that I said CAN be better, not WILL be better. There's an awful lot of misinformation out there, so if you're trawling for info on Meniere's you can actually rely on, be sure to dial your bullshit detector up to maximum and strap that thing on so tight that it leaves a bruise.
So instead of pretending to know what I'm talking about, I'll just give you a brief rundown of my experience.
In 2005 I was with the woman I wanted to marry, we were planning our life together and all seemed well. I got what I thought was an infection in my right ear; it was ringing, it felt blocked. I felt seasick. Off I went to the doc and she said it was most likely a nasty infection. Take a week off and if you don't feel better, come back and see me. Something like that. I had a bunch of sick leave saved, the dizziness was annoying but tolerable and I had Elder Scrolls on the XBox waiting for me. Sweet!
A week later and I was still no good, despite my progress as a mage in the game. At some point I had my first real rotational vertigo attack but I genuinely can't remember when it was. Thankfully my GP was all over it. She sent me straight off to an ENT who ordered an audiogram and a CT scan to rule out acoustic schwannoma. Cancer in your ear doodads, basically. If you have Meniere's symptoms like vertigo, tinnitus, hearing loss and fullness, GET A SCAN. Rule it out or catch it early. Simple.
Cancer free and with mild hearing loss in the troublesome ear, I was told that I most likely had Meniere's disease. The doc's advice sounded like the following, bearing in mind that I was suffering from hearing loss, so some elements may have been lost in translation:
"We don't know what causes it, but your ear is busted. It will always be busted and will probably be more busted over time. One day your other ear might break too. We can't fix it. Sorry. Here's some medication to help with the vomiting brought on by the vertigo. Here's a pamphlet on reducing sodium intake. It basically says 'don't eat canned soup or fast food'. If you feel really bad, wrap a towel around your neck, put a bucket on your lap, get your wife to drive you to the hospital and tell them you have Meniere's. Oh, and before you go, here's a suppository for your wife to shove up your clacker if the vomiting brings the tablets up. When's the wedding?"
From that point on I had a handful of attacks per year for several years. No big deal. I mean, they SUCKED but you can still live your life without major hassles. I had one shocker of an attack at Alcatraz, which if you're unaware is a closed prison island in San Francisco with a remarkable and long history stretching far beyond its days as a place for Clint Eastwood to escape from. I somehow managed (AKA with the amazing support of my wife) to negotiate a ferry ride then a cable car ride back to the hotel where I took some valium and slept like a log floating in chloroform. Alcatraz is great, by the way. Worth a ferry trip, if not a vertigo attack.
A couple of years ago we had a magnificent baby boy. Around then is when things got trickier. I got attacks every few weeks, then every couple of weeks. But I still worked full time and whenever I "took Meniere’s seriously", which meant stay away from my triggers like coffee and stress, my symptoms were lessened. So, based on the better part of a decade of experience, plus conversations with those who had lived with the condition for longer than me, we got on with life . We moved interstate in 2013 and BANG... I had attacks every three days or so. You can't learn a brand new job in that condition, let alone turn up often enough to keep your job. So I ended up resigning to work on my health. I'm still gutted about that and am determined to ultimately get back to work. Hence the hope to try a new treatment.
We moved again for the birth of our gorgeous baby girl, as we basically needed the help. With plenty of much appreciated support from family, we've started clawing our way back towards the life we had. My ear is better than it was, although I still have far more dizziness than I would wish on anyone. Despite this most days are happy ones, our kids are flourishing and we are once again moving onwards and upwards with our lives.
That being said, I want this vertigo gone. So does everyone with Meniere's. My good ear has mild tinnitus now, so this is the time to try something that might well stop it in its tracks and actually restore some hearing and balance function.
I'll go into more detail about my potential new treatment in my next entry. And if it all goes according to plan, I'll use this blog to keep you updated as to how it's all going.
I'll also talk a bit about being a stay at home dad. It's been a roller coaster and I love it, so I can hopefully turn that experience into something vaguely intelligible. Hopefully this first entry wasn't too painful either. It was written on my phone while holding a sleeping baby, which may explain a few things. Thank you for getting this far either way.
Health and happiness to you.
Justin
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