Wednesday, 11 April 2018
This will be a long one… please bear with me. I receive lots of criticism for raising Meniere's disease. My prime motive is and always will be raising awareness. I don't want sympathy… understanding would be progress. Honestly… hands up all those who knew what Meniere's disease was prior to it being raised? I did not even know what it was when I was diagnosed. I was told I had it, it wasn't cancer and I would have to learn to live with it! I still do not fully understand it.
Over the years, I have discovered some of the weird symptoms I have suffered, can be attributed to Meniere's disease. These light bulb moments tend to follow discussions with fellow sufferers and not from the professionals, who struggle to fully understand or appreciate the difficulties of dealing with it daily.
The most difficult aspect for me… its unpredictability. One day I am feeling well, energised, invincible and "normal" (although I'm not sure I have ever been normal, nor would I want to be!); the next day, I am totally laid up with the room spinning unable to control any element of my body.
The "IFFY" Days
It’s the "IFFY" days that get to me the most. Sadly, these days are frequent. I am not laid up with vertigo but deal with symptoms that make it very difficult to carry on day to day activities without making serious adjustments. These include – having vice like pressure across my ears and the back of my head; brain fog making it difficult to string a sentence together; trying to spend most of your energy masking the pain from loved ones; the constant swaying of the floor; complete sickly exhaustion where my whole-body aches.
but… the biggest daily fear – at any point, wherever I am, I could be struck with vertigo causing a drop attack. I have been so lucky up until now. I have only fallen three times outside – the first was pre-diagnosis, walking home with my son who was six at the time; the second when I was leafleting in the general election of 2015 and recently, in a car park. I have fallen in the house lots of times, thankfully the worst I have suffered is bruising to my arm, leg and lower back. No broken bones… yet!
All this leads to a huge lack of self-confidence and serious bouts of self-doubt. I never appreciated how hard life was with a disability or lifelong illness until it happened to me. We all think we are invincible. The mental strength that is required to get through a full day should never be underestimated.
The Hidden Pains of Meniere's
The incidental consequences of this disease:
1. Lack of understanding from professionals, employers and people in general
2. Feeling isolated – not just physically on days when I can not leave the house but in crowded rooms where I cannot hear conversations properly due to the tinnitus and background noise.
3. Having to miss out on events because I can not commit in case I am ill and can not make it.
4. Tired through explaining to people who say insensitive crap like "well you don't look ill!" Only my close family see me on my worst days.
5. Sensory overload – making mundane tasks – shopping – almost impossible without worrying or panicking. Oh, and the restaurants, hotels and supermarkets using patterned carpets and flooring!! DON'T!! The patterns move when I walk on them!
6. I have no patience for petty people and petty squabbles – life is to hard and way too short.
IT IS NOT ALL BAD.
There are positive aspects to Meniere's… well to living with it.
1. The brain fog and mixing up of my words gives us some huge laughs. Yoda has nothing on me! When I forget the word… it turns into a family guessing game!
2. I look like a cross between Bambi and Captain Jack Sparrow some days!
3. I appreciate every single day of my life and can categorically say, I took lots of days for granted before I became ill.
4. I am so thankful for my boys and how they handle our lives. They never put excessive expectations or pressure on me.
5. I can work at home. It's not conventional – I don't do conventional! It's tough, demoralising at times but it is my life and me – perfectly imperfect. I refuse to give in or give up hope. I may not be super talented, but I work hard and try even harder. If I can achieve my PhD and keep publishing work… I will have achieved my goals.
COPING WITH MENIERE'S
I am always asked… how do you cope? The short answer is… I have no choice. The easiest life would be to give up and let the Meniere's eat away at me. I am a fighter. I was born with the umbilical cord wrapped around my neck with a knot in it. It was touch and go whether I would survive. I did, probably disappointing to some!
I want to prove to the boys… and to myself… I can have a life with Meniere's. It took me a long time to accept what I lost, and to embrace what I gained. I wish to leave a legacy my boys can be proud of and if I can inspire one person to not give up and follow their dreams, I will have done a good job.
So how do I cope?
1. Accept on the bad days to go with the Meniere's flow.
2. Know when you can and can NOT exceed your limits.
3. Don't let professionals and the illness defeat you.
4. Surround yourself with inspirational people.
5. Laugh… a lot… usually at the disease's expense.
6. Low salt diet
7. Drink litres… and litres… and litres of water.
8. Exercise – it really does help me.
9. Don't hide away … its very tempting at times
10. Be as strong as YOU can be.
11. MUSIC… I love my music
12. I've learned I am strong, resilient and adaptable – I can even type with my eyes shut!! New party trick.
13. NEVER GIVE UP HOPE
Beyond the Lies is being proof read at present. I will confirm the publication date shortly. I am revisiting much of my drafts and early works. I have learned so much over the last few years especially self evaluation and improvement. Never stop learning.
We moved to a new house recently. The whole experience was highly traumatic but with sheer will, determination and bloody mindedness we got through it. I could not have done it without my amazing sons and adopted daughter. Now I need to rebalance my body… no pun intended!
Whilst we celebrate Liverpool FC emphatically booking their place in the semi final of the Champions League, we remember the lives that were taken and changed forever at Hillsborough. Still waiting for justice. #JFT96. Always remembered.
Thank you for all your continued support. Messages are always welcome. If I can help, I will. Stay safe everyone
Sunday, 4 March 2018
On the 15th June 2014 I wrote a blog named Swimming against the tide. This is an extract from it:
“I decided I wanted my children to understand the importance of struggle, of community, of what is right and wrong and most of all about respect. Most days I am swimming against the tide but nevertheless I still swim. I still swim because I would like my boys to be strong individual men that respect themselves and have respect for all others. I hope their greatest attributes will be respect, honesty, integrity, justice, decent morals and tolerance. Just imagine what sort of a world we would have then. If you don’t invest the time in children, how on earth can you expect them to turn into decent human beings? I can’t be doing too bad a job when my son is giving my advice out and asking if I would help his friends if they need it!!” (full blog here).
For too many years I have received criticism for the way I have raised the boys, but I knew my plan and I was sticking to it, not out of arrogance but because I knew that my way of raising them would allow them to develop their own skills in many areas they need to have a successful life. These skills include communication, problem solving and the key skill of all critical analysis. I have taught them politics from any early age… all spectrums…for them to be armed with the tools to think for themselves and not be easily influenced by ignorance and bigotry. They can make their own minds up and if they make a mistake they have problem solving skills to put things right. Despite the criticism, it has been the best thing I have ever done… by a mile. Don’t get me wrong… I’m not a perfect parent and often gets things wrong. I do, however, own my mistakes, admit to the boys when I am wrong and apologise to them. They know we are all only human and all make mistakes.
I am so pleased I stood my ground because these invaluable skills are being denied to our children in the English school system. The World Economic Forum, UNESCO and OECD have all published reports into what skills our children will need to be successful in the changing world of work. These are:
- Critical thinking and problem solving
- Collaboration across networks and leading by influence
- Agility and adaptability
- Initiative and entrepreneurialism
- Effective oral and written communication
- Accessing and analysing information
- Curiosity and imagination.
Yet, the English education system, under the Tories, has been turned into an examination factory where the only concern is to teach children to pass examinations. The system is sucking the life, the imagination, the creativity and independent thinking out of our children. Teachers are powerless to prevent it. This is solely down to this horrendous Government. You would have thought; the Education policy would centre around these seven essential skills. The reality is, it is having the opposite effect on our children. Add to that the draconian disciplinary regimes and we are heading for a generation of adults who have had opinions oppressed and been denied a voice on top of being denied the skills required to succeed in a changing world. It is time we faced up to it… Education is NOT educating our children.
Changes in the Computer Science curriculum and the withdrawal of ICT this year will result in some of our children not being provided with any digital skills. This is a subject very close to my heart and I am furious the Government refuse to address the skills deficit. There are pockets of good practice, but this is outweighed by the vast number of children being deprived of essential skills training. WE SHOULD ALL BE CONCERNED.
Therefore, my PhD is so important to me. It focuses on the delivery of Computer Science in the secondary schools. I believe our children deserve so much better than is being delivered but the system requires a radical change including substantial investment. I am doing my bit. We need a Government committed to providing skills for our children to truly succeed in life.
Today I finally submitted the manuscript of Beyond the Lies to the publishers. I apologise to everyone who is waiting for it but in true self-doubt style, I can not submit it until I am 99.9999% happy with it. I’ll keep you updated.
Finally, an update on the dreaded M word… Meniere’s of course. Last week, during the storm, was horrendous. I lost four days to vertigo, sickness, tinnitus and the dreaded brain fog. Today, I still have the same symptoms, but they are bearable although the boys have laughed at me mixing my words up… I’m sure Yoda was based upon a Meniere’s sufferer.
Have a fun week. I intend to. I am fighting and will continue to fight. Keep the faith
Tuesday, 6 February 2018
Today, in the UK, we celebrate one hundred years since the passing of the Representation of the People's Act 1918. This act gave a limited number of women the vote! Equality in voting did not occur for another ten years… TEN YEARS in 1928.
We may have the right to vote today but we have a hell of a way to go before we see true equality. I have no interest in the notion of women being superior to men or vice versa. We are all human beings, only separated by genetics. What concerns me more is the artificially made inequality within our society.
The hypocrisy of the Prime Minister and Home Secretary this morning is sickening. They are lauding the Suffragettes, their actions and their fight yet these two women are responsible for Parliamentary Acts specifically designed to stifle democracy and freedom of speech. In addition, their Conservative Party has orchestrated poverty, WASPI women loss of pensions, working mothers being disproportionately hit by austerity and our young girls suffering period poverty.
Cameron was even worse. His ignorance was permanently and clearly on show when he referred to female colleagues as "she". This disdain for women MPs continues, a glaring example was the during last week's Prime Ministers Question Time, when Tory MPs did their best to bray at and shout down Emily Thornberry. How do we really expect to convince our girls to voice their opinions and take public office?
I admit, I have no desire to serve in public office due to the negative media attention and the biased bullish behaviour some men display. I would much prefer to work with books and use research and education to influence future policy. I should not feel that way… but I do.
I faced sexism and misogyny all my life especially in a male dominated industry but even today, some recent events within my own local party, only demonstrated misogyny is alive and thriving in 2018.
The whole system, Government and commerce, is endemically against mothers yet being a Mum is a vital role within our communities. As a single Mum, I was constantly told my growing boys needed a male role model. They did NOT. They needed a strong role model who could teach them the importance and significance of equality and being respectful to ALL human beings.
All these calls for more women MPs, business leaders, role models, etc, etc will never be achieved without a total change in attitude and ethos within our whole society. It must start with education of both boys and girls. We must get away from this divisive language and rhetoric. As soon as a child enters the education system, they are labelled and collectivised based upon gender which immediately hinders their opportunities in certain subjects because of societal stereotypes. This is prevalent in STEM subjects. The fact that Wes is helping me write this, demonstrates how far we can develop mutual understanding without gender bias.
What I would like to see going forward, amongst many other ideas:
- A conscious effort within education to eradicate divisive, restrictive labels and stereotyping
- An education curriculum that truly represents equality. The curriculum is weighted towards men's achievements – Bletchley Park is known for Alan Turing's codebreakers yet actually 8,000 women worked there and were instrumental in the war effort. They made up 75% of the workforce but rarely get the recognition they so richly deserve.
- I want issues not to be "women's" issues. Period poverty should concern everyone in society as should sexual harassment. Men and Women should stand together to fight for these issues. My boys know how to treat men and women respectfully, more importantly equally.
Anyone who believes in equality, regardless of gender, should unite and fight for true equality. I don't want to set in women's groups. I want to take the fight to the main platform!!
Let us promote behaving as equal human beings.
Let us unite and fight for true equality against economic and political systems that are specifically and inherently designed to divide us. Let us also fight to ensure every human being has their right to vote across the world.
I can't write this post without mentioning… today would have been Annie Williams' birthday. Annie fought tirelessly for the truth and justice for Kevin AND all the victims and survivors of Hillsborough. A Mum, through no choice of her own, fought with love, great resolve and dignity. She took the fight to the establishment at such great personal cost to herself and her amazing family and WON!!
Annie will always be my hero.
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