No one person can write a definitive piece on disability, because disability is as varied as humanity itself. But some of our experiences are universal, and here are mine.

After a lifetime of battling unexplained severe migraines and seizures, I had a brain haemorrhage when I was 30 years old. I woke up a week later, having been in a coma, and was informed that I had a bleeding AVM (a type of haemorrhage) in my brain.

For the last nine years I have been on full-time bed rest as I try desperately to stem the AVM attacks and extend my life for as long as possible.

Most people can’t even comprehend how a mentally active adult and parent can manage to live an entire decade on bedrest, in one room.

I have sacrificed so much.

Once I had a brilliant writing career ahead of me. I was writing for international news outlets, and working on my book. While my book has been successful, I have had to give up my much-loved freelance writing work. I’ve tried to remain active in my community, via social media, activism, and charity work.

My average day starts with piercing pain in my head, I am aware of the pain before I’m even awake. I do an instant assessment as I come to, “Do I need an ambulance?” That thought goes through my head each day before I open my eyes.

Always I am in agony of pain but about five or six times a year I require emergency intervention. Those are the days I live in dread of. The pain is beyond description, the vomiting not helping, and all I can do is scream for relief until the ambulance arrives to medicate me.

Those are the AVM attacks, but the daily pain I am in is enough to knock a rugby player out, it is often hard to focus on anything else and my day is a routine of managing pain killers. My head pulses where the AVM is; it feels like a soft bruised peach, vulnerable.

The impact my disability has had on my family is devastating.

My husband has gone from a manager at an NHS hospital to taking care of me and our son in every way imaginable. We depend on him for the roof over our head, to manage the near-constant DWP appeals, and more.

I cannot deal with the DWP myself because the stress is so enormous it triggers my AVM. We have to undergo constant assessments to maintain my disability benefits, intrusive interviews just to keep us ticking over, despite the fact my condition is unlikely to ever change.

An AVM is like a puppy - it’s for life.

My young son, 11 years old now, has suffered an unspeakable amount of terror and anxiety watching me suffer so and knowing that I could be taken away from him at any minute. The emotional toll on a child who has a mother with a condition like mine is devastating.

There are many things you can’t do when you are disabled - such as rent a home. You’ll find 90 per cent of house listings and estate agents say “No DSS”. The DSS doesn’t actually exist anymore, but it’s a way of saying “no benefits”.

I have asked our MP Will Quince, and countless estate agents, where am I meant to live? There has been no satisfactory reply and no offer of change when the issue was taken to Brandon Lewis, Conservative MP then in charge of the private rental sector, now chairman of the Conservative Party. He is also a private landlord.

Perhaps it would be better for tenants and disabled people if we too were represented in the Houses of Parliament. I myself would happily stand for MP if I were physically strong enough but sadly, I am not (another dream I have had to say goodbye to).

Disabled people are at the frontlines of the housing crisis and we need help, fast. I have money given to me by the government because I have a dangerous, debilitating condition. And I too have worked and paid my taxes. I deserve a social security safety net.

But I have nowhere to spend that money on for housing, its essential purpose.

Right now my family are in a situation where after living nine years privately renting our house, we were issued a “No fault” eviction. For the convenience of our landlords we are no longer welcome in our home.

But we can’t find another one.

After three months of searching we still haven’t found a rental house that will accept PIP, children, and cats. We’re facing homelessness after 20-plus years working and paying taxes, all because of my disability.

Another thing you can’t easily do when you’re disabled is go out.

People who have a broken leg might find themselves inconvenienced for eight weeks or so, but they will heal, and they will not be denied a home as punishment for the broken bone. I have no choice but to rely on a wheelchair for the rest of my life.

In all of 2018 I have only left my house once, to go to the hospital. School had just let out and the pavement was heaving with hundreds of bodies, all looming several feet above me, sitting in my chair. My husband was pushing me but the shameful state of our pavements meant my wheels kept getting stuck in craters that make the Grand Canyon look shy.

It was a mortifying and terrifying experience to be stuck within the crush of that dark crowd, swarming around me while my husband struggled to lift me in my chair over another crater in the pavement.

By the time I got safely inside the hospital I was in imminent danger of fainting.

There is a dearth of disabled parking in Colchester, and when so many able bodied people use disabled bays, “For just five minutes”, we rarely find somewhere to park.

If we are lucky enough to find a space we then have to deal with being squeezed by the crowd, and shops with terrible accessibility. In fact Colchester’s High Street is so hostile to disabled people I have virtually stopped using it.

When you’re in a wheelchair people don’t see you as even fully human.

I was once with my son in a busy airport, me in the chair holding his hand tightly. A man wanted to come through with his luggage but the crowd was too thick. Without even speaking to me, he came over, took the brakes off my chair, and rolled me approximately ten feet away from where I had been, terrifyingly separating me from my young child in the process!

That is not only extremely dangerous but it is dehumanising.

And I know I will have to live with it, and try to educate people over it, for the rest of my life.

That is my disability. It is real, it is inescapable, it is terminal, it is ugly, it is poverty inducing, it is lonely.

Sadly, there is nothing temporary about it.