I am not useless… I am ill … doesn’t everyone deserve the chance to thrive not merely survive?

I am not useless… I am ill and alone fighting in a world that is not made for people like me.

I am putting this out here today, not because I want sympathy or solutions but because I want people to know that unless you are part of the Tory elite, having public (OUR) money thrown at you, the struggle to improve your life is being made virtually impossible by this rancid, elitist Government.

I worked in the insurance industry for twenty years from leaving school. I worked damned hard, very long hours and earned my promotions. I was on an excellent salary (less than the men but still…), I worked by way up to management level – had a company car, private health insurance, great pension and prospects.

Then, I fell ill. Suddenly overnight I had dizziness, ear pain and none of my thoughts were clear, some days I could not even finish a sentence. Now I know this is brain fog! Countless trips to the GP and all I ever got was “oh it’s Labyrinthitis and here is a sick note. Come back if it’s not cleared up.” This went on for over a year. I lost my job and my career on top of not knowing what was wrong with me. I thought this period was the darkest, but I would be wrong!

After nearly 3 years of going backwards and forwards to the GP, I turned up one day and was totally at my wits end. I saw a locum GP whose own mother suffered from Menieres Disease. I described what I had been through and she immediately referred me to a Consultant. Finally, after 3 and half years of worry, I was diagnosed with Menieres Disease. I remember the day very well… the relief of knowing what was wrong with me, although I had no idea what it was or how my life would change!

Over the years, I have learned so much about this unpredictable monster and have, at times, been asked by GPs what I think is the best treatment… as they put it “you probably know more about the disease than we do”.

Once I got over the shock of the illness, losing the career I loved and having to readjust to my “new” life, I decided it was not going to hold me back. Financially it did. I had always wanted to write a book, so I did, two in fact and I am still writing today but it does not pay the bills. It may one day but not at the moment!

I decided, the best way out of this mess was to go to University. I graduated with a 1^st class honours degree in 2011 that is when I wrote my book and had the first published in 2014. In 2017, I graduated with a Distinction in a Masters in Information Technology as well as writing my books. Life was going okay, we were getting by, mainly thanks to the understanding and cooperation of my boys.

During my Masters, I started to feel ill again, more than the usual brain fog, fullness in my ears and dizziness. After another eight months of wrangling with the GP, I finally “won” a brain scan and another Consultant appointment. After all the tests, I was diagnosed with Vestibular Migraine on top of Menieres Disease. I left hospital thinking, this is not good, but I can manage; I had done it before.

I got through my Masters and knew that in only four more years, I would achieve my goal of re-training and be able to start earning again. Studying gave me my independence but I could still cope with the illness. I had found my purpose – research! I wanted to do a PhD, looking at computing in secondary schools and how we could enable all children to access the skills they would need in the future workforce. Leeds Beckett University has literally been my saviour through this transition.

I claimed as little as possible from the State even though I had contributed to the system. I never claimed for my disability as it was hard enough to get GPs to understand it… imagine having to explain to an admin clerk at the DWP! We managed to survive (and I mean literally just survive) on housing benefit, tax credit and child maintenance. The boys have been super supportive. We soldiered on. I rested when I needed to and worked twice as hard when I could.

I have always had a strong work ethic and wanted to work through the illness BUT industry is not suited for people with invisible, unpredictable illnesses. There is no sentiment in business – I learned that the hard way – no empathy or humanity either!

Re-training was my only option.

After progressing onto year 2 of my study and feeling great with how it is going, yesterday I was stripped of my housing benefit, because… wait for it… my son dared to pass his degree and start working.  YES… you heard that right. He is now expected to pay 100% rent because he had the audacity to work hard. Not 50% of the rent, 100% !!

Yet again, my dignity stripped. My twenty years of top contributions insignificant. SECOND year into my PhD, and today, I feel like I did the day my illness stripped me of my livelihood, my independence and my dignity.

I feel worthless! I can’t support my children. I am not even sure whether I can continue my PhD. No one is disputing my son should contribute to our home, in fact, he would not have it any other way BUT 100%??? The irony is if he lost his job, he would not be able to claim housing benefit as he is under 25. And before anyone says it… I am not asking other taxpayers to pay for my rent while I study. I am asking for the assistance from a system I contributed to. The insurance policy I paid into, which has effectively handed me a massive F*** you! If it was a private insurance company, I could complain to the Ombudsman or the Financial Conduct Authority!

The rug has, yet again, been pulled from under my feet. For what? All I am trying to do is get back on my feet – difficult enough with Menieres! I don’t want to give in to the illness. I don’t want to sit at home and watch my life fade away. I WANT TO WORK. I WANT TO THRIVE and I want a career. Yes, I must readjust but I am NOT USELESS… I am ILL!

Yet today, through no actions of my own I feel utterly and totally beaten. Not by my own failures, not by this horrible menace of an illness but by a system we are told is designed to support us, help us, lift us and enable us to achieve “social mobility”. I feel a failure, a crap Mum! I am mentally exhausted, scared and dejected.

By trying to better the life chances of my family, my health is at risk – not from over work but from financial pressure being forced on me by suited elites who sip champagne paid for by OUR money, the cost of a bottle could feed my family for a week. MY contributions for MY safety net being squandered by people who do not value life. It is not politics of envy but politics of survival.

My study I am trying to do, I hope, will help millions of kids who want to succeed in life but are being held back by those in power. The perception being sold to the electorate does not bear any resemblance to the reality of everyday life for millions of us. Please spare a thought for every human being …the ill, the homeless, our children… doesn’t everyone deserve the chance to thrive not merely survive?