Thursday, 25 January 2018
Meniere’s – ticking time bomb
The more I deal with this ticking time bomb, the more I realise it is essential to keep raising awareness. Over 13 million people in the world suffer from it yet the reaction I get when I speak about it is one of “what is that?” and “well you don’t look ill”. Only my boys see me on the bad days. Time is so precious.
Everyday, I spend 50-60% of my energy disguising the symptoms and fighting the disease so people don’t see its true effects. That only leaves between 40-50% of my energy to raise the boys, run the house, sort the finances, study, write and keep everything together. The hardest part of it is not knowing from one day to the next, what symptoms, what attacks, what the hell is going to happen. It is really a ticking time bomb. On a recent visit to the doctors, the doctor was talking to me and all I could think of was the old loony tunes cartoons (appropriate!) When they used to have one of those round black bombs lit and were running around with it and you knew it was going to explode. Lol... that's Meniere’s... a ticking time bomb. Also this gives you an insight to how my warped mind works... the boys understand me lol 😎😎
Some days are easier than others. Today was one of the days when Meniere’s beat me…zero energy to fight it. The daily inner fight is the part people do not understand or appreciate about invisible illnesses. I did not until I was diagnosed, and it progressed further. You think you are invincible. The effort it takes to live a “normal” life should never be underestimated, especially when you consider the Meniere’s is only the tip of the iceberg and other symptoms include dizziness, the room spinning at bedtime, the trips and falls, nausea, jaw pain, anxiety, depression, self-doubt, tinnitus, fluctuations in hearing, sensory overload (patterns, lights, noise), the panic attacks when you think you are going to start with an attack and then concentrate on not having an attack so forget what you are supposed to be doing, not knowing if the right words are coming out of your mouth and the damned brain fog. We deal with all this through laughter especially the brain fog. I will forget a word or get the words the wrong way around – a bit like Yoda but unintentionally.
All this, goes on behind the scenes. Very few see it and even less understand it. I don’t want sympathy or understanding. I would love more research and a cure. As a family, we have learned to live with it. The boys know the not so good days and adjust their behaviour accordingly. I feel sometimes that society and this wretched Government have written me and others like me, off. I won’t get a job and be able to keep it unless there is a full appreciation of the unpredictability of this illness. I need flexibility and the ability to self-manage the symptoms and life. Ironically, it is a balancing act!
I refuse to be written off and wither away without leaving my legacy. That is why my PhD work and my writing means so much to me. It is personal. My political fight continues, now more than ever. I want to fight for people who can’t fight for themselves. So, I am not “normal”. Normal is overrated. My illness drives and motivates me. I am a fighter and always will be.