My Illness, My Curse

I went to see my Doctor as I heard clicking in my shoulder, and it was sore. I had the ultrasound and x-ray and went back to see my Doctor, who looked at the results and started to tell me, "You have come to an age..." I didn't hear anything after that; that's all I heard. I just turned 40 not long ago!!! And it was all downhill from there. It felt like I was at the Doctor's almost every week.

I noticed my migraine patterns changed, and my tinnitus was now in both ears, louder than ever, and it never went away - 24/7. I also fell down my front door steps one day. It was like someone pushed me from behind, but nobody was there because I was home alone that day. And that's when vertigo came around, which lasted about six weeks. I did some research, and I entered all my symptoms into Google, and they all pointed to Ménière's Disease. My Doctor agreed and referred me to an Ear, Nose, and Throat specialist.

What is Ménière's Disease?

Ménière's disease is a progressive inner ear disorder that accumulates fluid in the inner ear. The results are fluctuating hearing loss, lack of balance and periods of terrible vertigo. It can occur at any age, but it usually starts between young and middle-aged adults. It's a chronic condition, but various treatments can help relieve symptoms and minimise the long-term impact on your life.

Oh, and there is no cure for Ménière's Disease. Lovely.

Specialist Diagnosis - Chronic Illness Ménière's disease.

In a way, it was a relief that I now knew what was wrong with me and that I wasn't dying. But on the other hand, that really sucks. The audio graph's pattern shows Ménière's disease, which I did have a second opinion and the charts were identical. The second opinion explained that the marks on the graph going in a downward pattern scream out "Ménière's disease."

I copped it pretty severe. Medication, water, rest and No Salt are what I needed to manage this. I could not work, drive, or exercise, and as it progressed, I became housebound. Sometimes bedridden for a couple of weeks. My equilibrium was way off, depression and anxiety became worse. My triggers were fluctuations in noises and movements. Nystagmus, nausea, just feeling sick all day, every day. And there was nothing anybody or I could do about it. I tried all treatments, acupuncture, white noise, pink noise, hearing aids...the list goes on.

The only way to describe this disease to anyone is: Imagine that you are on a boat with seasickness or motion sickness, and you can't get off the boat ever; you can't get any relief whatsoever.

To understand this illness and its symptoms better, head down to https://www.facebook.com/InvisibleDiagnosis.

When my whole world came crashing down.

From being an independent, outgoing and confident person to a housebound, bedridden, I have to rely on people person; I just wanted to die. The thing about this disease is that it was invisible; nobody could see how really sick you were until they saw you at your very worst.

From my experience, being more severe, suffering from chronic migraines and the feeling of being queasy, clammy or sick to your stomach- all day, every day with no relief. The spinning in your head just doesn't stop, and I won't forget the nystagmus; your eyes are playing ping pong in your eye sockets, and you can't control it. You become bedridden. And even though your head is still spinning, your head is banging with pain, you tend to collapse into a deep sleep for a few hours. It would have been nice to awake refreshed and pain-free, but no, you don't.

The Life Outside my House - there is no life outside my house.

Everything moves out there, and it's not safe; there is a lot of noise, movement, and so much confusion to make me sway, lose balance and fall. Crossing the road was dangerous and forget about driving! But I did have the chance to go out there into the world. My mum had been trying to get me out as she was concerned with my depression...so on a better day, I agreed to go out with her. NEVER AGAIN. Focusing and concentrating on the steps to take to get yourself ready to leave the house and then mentally work out how to get yourself from the house to the car without losing balance and falling was stressful. I used to love being around people but not anymore; the noise and the movement from everyone made me sick literally. There was a moment that day I was in the book store skimming through a book, and I fell. I was just standing there; I lost my balance, and I fell. Remember the girly shopping?? Forget it, not even window shopping. I couldn't trust my surroundings unless I was at home. Being a passenger in a car or even public transport was an issue for me too.

Astasia

My equilibrium has been compromised. Looked like a drunken mother with a 9year old boy helping me keep my balance while crossing the street. The spotlight was on me, and it didn't look good. And I was also told, "I shouldn't be drinking so much" while walking in public with my son. I'm a drunk without alcohol. Haha. So, I stayed home. And this is how you become housebound. It's like you have some kind of allergy to the outside world beyond your house, where you feel safer.

Support

Then there was the support from the Government that I needed as I couldn't work. You know, it took two years and an email to our Prime Minister for the Government to understand how severe this illness was to work or even live my life? I just wanted to finish with the stress of it all and the rejections. There were 3 rejections, and one of those was a rejection from the Tribunal Hearing. I didn't want the support from the Government; I had had enough. Your life has been completely wiped out. It was like you had to relearn everything. You could start a task or a chore, but you wouldn't be able to finish it. OR you push yourself to complete it and become bedridden for a couple of days. That's the choice you have. I also have a family to look after. I was at my lowest point. I was sick of being sick, and what life is this for someone to live?

But within a few days of sending the Prime Minister the email, it changed.

In December 2016, the Government approved DSP. (Disability Support Pension).

A Tinnitus Ménièrian

I am a perfect combo; a tinnitus Ménièrian with a hearing impairment; I am not DEAF but hearing impaired. When people talk to me, I hear unfinished words, unfinished sentences, and parts of the conversation will be missing. It's like a horrible phone line service where every second or third word is missing. You just want to hang up already. If you also have a strong accent, more focus and concentration are needed. When someone is speaking with me, they need to be facing me. I need to see the whole face and body language to understand the conversation. Hearing aids help to a certain degree, especially for someone with Ménière's. So I don't wear them as often as I should. But, they do help slightly with tinnitus. There's also hearing hallucinations. You see, a new sound is formed with the combination of the different tinnitus sounds and the surrounding sounds! One night, I almost had a panic attack thinking an atomic bomb was let loose and heading towards us. As I got up to rush and get my child, who was asleep, I realised the sound was coming from a plane overhead coming in for a landing.

So to trust my hearing is a bit challenging, and I need to use my other senses to work with my hearing issues.

Management

How do you live with such a progressively debilitating illness?

You have some good days and bad days until you learn that you cannot do what you usually do on a daily basis anymore, and you can only do what you can do at that moment. Rest is all your body needs. I did take advantage of the good days to do what I haven't been able to do, but guess what? Bedridden for the next 2-3 days. I wasn't going anywhere; I'm housebound; I could do my whatever whenever because I was now in my home 24/7. The housework had to be done, but I had no visitors other than my family, and they would help with what needed to be done. Not like any of my friends were coming over.

Next~Losing My Humanity

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