Thursday, 25 January 2018
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.
Sunday, 14 January 2018
Enough is enough. Are we really regressing into the past world of segregation and inhumanity? I make no apology in saying that unless these attacks are directed at you, you do not personally know what it feels like.
My eldest son is mixed race. His Dad is British like me yet since Brexit, my son has suffered racism and a change in attitude towards him. I see it too when we are walking around the supermarket – the looks he gets, the disdain, the women who suddenly clutch their bags tighter, not to mention the under the breath comments. It is repulsive and disgusting and legitimised by world leaders and politicians. He tells me how it makes him feel but I can't imagine it, just as he can't imagine how demoralising it is for me to be treated with contempt because I am female. I don't want tokenism, I want fairness and equality based upon my experience and hard work just as my son wants to be treated as the good, British citizen that he is. His patriotism is far stronger than any one flying a flag on a Britain First march. He cares about this country and exercises his right to question the cruel, inequality of this Tory Government, not for him but for his fellow citizens.
Freedom of speech does not include allowing hate speech. I certainly feel that we are going backwards and if we do not get a grip of it, there will be irreversible damage. Equality is NOT political correctness. It is common decency and well, humanity.
If we really want to address inequality, we must stop treating people differently and sticking labels on each and everyone of us. Forget the information based on gender, race, sexual orientation, etc. We are ALL human beings. I have never approved of equal opportunity monitoring forms. They do not help equality, nor do they serve any purpose other than to provide statistical analysis for employers and Government agencies. Let's face it…in the current climate, it is more than likely, the information will be used to discriminate. Flouting equality laws has become the new norm legitimised by changes in the legal systems making it impossible for any legal redress due to the cuts in legal aid and spiralling tribunal fees. The changes in the legal system was no coincidence. The Tories have planned this divide and rule strategy, systematically singling out sections of our communities for derision and attack.
Then there is our "special relationship" partner. Trump is a racist and was a racist before he was elected. His popularity repulsed me and to have even socialists, telling me he was a better choice than the Democrats, only demonstrated how little regard some people have for equality. There is no excuse at all for racism, bigotry and misogyny yet, during both Brexit and the USA presidential campaign, they were not only brushed off, they were actively incorporated into the campaigns. This is not ignorance, this is a calculated act of pure evil. Have we forgotten what our previous generations fought for? The fact that Trump made his "shithole" comments then could dishonour Martin Luther King just shows how ignorant we are becoming. This ignorance MUST be stamped out NOW. We must use our voices to educate our children and make sure they understand the struggles of the past do not become their new fights of the future. We need to arm future generations with the tools to promote true equality, to eradicate the world of labels, categories and types. We are ALL human beings.
Now, more than ever, anyone who truly believes in equality, should be fighting together to stop any attempts of Governments and world leaders to try and divide our communities based upon gender, ethnicity, religious beliefs and sexual preferences.
DO NOT STAND BY… STAND TOGETHER
Wednesday, 10 January 2018
June 2018 sees me hitting my half a century! I may look it, but I don’t feel it… well some days I may! If I think about it, it scares me because I still have so much to achieve. That’s what happens when you start late but better late than never. It drives me on even more to ensure I achieve my goals, be healthy and happy and make the boys proud of me.
This year I am going to be kinder to myself. I have not had a break in fifteen years, so I am going to pursue some of my own interests while the boys are doing their thing. The first on the list is a trip to Bletchley Park. I am a little excited… NO… I am in giddy child mode! It’s been on my list to do for a long, long time.
A good friend of mine, without them even knowing it, has really helped me to put the past to bed. No more looking backwards, only forwards. I am so grateful for their friendship and glad they are in my life. They inspire me to keep going.
One thing I do suffer from is self-doubt. I had originally set a 2018 goal to overcome it, but I am not even going to try. Self-doubt is my driver. It drives me to be the best I can be in anything I go for. It got me a first-class honours degree, a publishing deal and a Distinction in my Masters. I may tweak it a bit, but I need it to drive me forward.
The symptoms are getting worse as predicted but I can manage them, once I get on top of them. The stormy weather is a real problem for me, as is stress. Both are terrible triggers. The latter I can try and control but even I can’t change the weather. I live with this daily and some days just controlling the symptoms and pain takes all my energy and resolve. Even the Doctors have started to ask me for advice on managing the symptoms.
On the good days, I intend to make the most of every second. Wes laughs when I say this because even on the bad days, I force myself to do the jobs that need doing even if it results in me falling over, which is does… often.
I am revising this again! I am not releasing any work until I am 100% happy with it, however long it takes.
This is my project to start in 2018… a lifelong ambition to change a small part of the world in my own way. The boys are really excited I am doing this. I am currently working on the proposal. I am impatient to complete it but must understand Meniere’s will slow me down some days but never stop me.
Oh! Jeremy Corbyn
It is time we joined together and stood up for true British values. I will be working to get rid of this cold, callous government. I hope you will join me too.
Right, no rest for the wicked. Back to the research. My goals won’t achieve themselves. Whatever you decide to do in 2018 – love what you do and be kind!