A Day in a life...

What follows is a snapshot of thoughts published by various MD sufferers, including myself.  I apologise for not being able to name contributors, but I feel that sharing these thoughts may help non-sufferers appreciate just a little bit more what this whole MD thing is all about.

Life with Meniere's Disease: Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus - imagine having a headache caused by a fire alarm ringing or a swarm of bees buzzing in your ear continually for a long period of time, or imagine the sound made by feet trudging through crisp, fresh snow, or an ultrasound in full swing.  You can't hear anything but those damned noises  - It drowns everything else out.

Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off.  Now imagine that with these two things, you'd be dumb enough to get on one a roller coaster ride or one of the amusement park rides that spin in two different directions at the same time.  I'm not that dumb, but unfortunately I have no choice in feeling these sensations.

While playing havoc with your balance and equilibrium, this disease also wreaks havoc with your hearing.  The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.  I may not be too bad now, but only because of a PermaVent in my ear.  What happens when I can no longer have a tube, or it becomes ineffective?  You can't help but wonder.  You can't help but worry.

On a daily basis, your brain is so confused by the signals it's getting from your ears that your balance is all over the place.  You run into things constantly because you can't balance well enough to avoid walking into them, or your mind is telling you the object is a couple of inches from where it really is.  You have to laugh when someone teases you about being such a clumsy sod, but it kills you a little inside every time it happens.  There are times when I could make Mr Blobby look graceful.

I also have days that my coordination just doesn't seem to be together.  I'm carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body.  I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realise they are there.  Apparently this happens because the part of your brain that recognises parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don't seem to have a hearing loss in can sound extremely loud, unbearably so.  I go from being unable to hear, to something quiet seeming incredibly loud – and all within the same few minutes.

The disease also plays tricks with your vision.  For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement.  Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times.  Your eyes tend not to be able to "track" movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren't reliable.  It's what some people with the disease refer to as "brain fog".  Many of them originally were afraid that they may have a brain tumour or Alzheimer's because it can sometimes gets so bad.  Finally they find either a doctor who is very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.  An MRI is usually given to rule out a tumour.

All this activity results in fatigue.  Incredible, mind-numbing, bone-weary exhaustion. You can hardly lift your head off the pillow, let alone your body from the bed.  Walking seems almost impossible, as if your feet are deep in thick treacle.  The fatigue makes you feel even worse physically, and mentally you feel as if you can't focus on even the benign, minor things life throws at you.  Fatigue, over a period of time, becomes as debilitating as the main symptoms themselves.  And it's a fearsome combination.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, disequilibrium, or "brain fog" is going to hit, or how bad it will be.  At least with being drunk or riding an amusement park ride, you know what's causing it, and you can make the choice not to do it again.  With this disease, there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure – the final depressing fact.  And facing up to this while you are physically and mentally impaired is no fun, believe me.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere's for many sufferers.  We often ask how much worse can this disease get?  For some strange reason, doctors aren't very willing to give out worst case scenarios.  We hope for relief, yet suspect there will be none.

On my not-so-bad days I may look like a healthy, able-bodied person.  But I am ill every day – there are just varying degrees of that illness.  You have to realise that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.  It's a vicious circle, and it spirals only downwards.

So, please, don't judge me unless you've walked in my shoes.