This is quite a long detailed story of my life and struggles, but there is a lot to cover, so if you aren't interested you can scroll on or you can just read specific sections as it is split up into sections to make it simple.

Living with chronic illnesses, disability and being unable to work is hard, especially when you have no income and can't get one.

When you worked hard throughout your life, but can't get support because of trivial rules, for example I can't get the main disability benefit in the UK because I pushed myself to work part time instead of quitting totally. That means I can NEVER get the main disability benefit (New Style ESA). Because I worked part time instead of just quitting totally. I fall through the gaps of the system.

This is quite a long post, but there is a lot to cover and it is split into sections so you don't have to read it all, you can just read specific parts if you choose to.

Read on if you want a crazy ride.

My Childhood and Family

I had to grow up very quickly and look after myself from a very young age.

My dad died when I was a baby, my grandparents died when I was a child, and my mum was my last living relative. I have no other relatives, not even distant ones. There is just me.

My mum kicked me out when I was 15, and I had to support myself. I actually started living alone before I was 15, and by 15 I was completely on my own as my mum moved across the country.

I had to learn to look after myself and manage everything from a very young age, when most people are still being looked after by their parents.

My mum died some years ago, so I have no family left at all.

My Health

My health started getting bad a few decades ago. It took decades to get diagnosed due to the NHS postcode lottery and the lack of diagnostic tests available to me.

I was eventually diagnosed with chronic illnesses, including chronic fatigue and chronic pain, along with other health issues.

Over the years, my health continued to deteriorate. I went from working full time to reducing my hours and working part time because I physically couldn't manage full time work anymore.

I carried on working for as long as I possibly could, until eventually I couldn't even manage part time work.

I then spent years trying to find other ways to earn money and looking at anything I could possibly do, including things like crafts and other similar ideas. But I simply cannot do these things. I am dramatically chronically ill, have severe fatigue and am in extreme pain every second of the day.

I have no energy, ever. Even getting up out of a chair or out of bed is difficult now. Just existing is difficult.

I haven't simply decided not to work or not to try to earn money. I worked for as long as my health allowed, and then spent years trying to find other ways to make money. I have reached the point where I physically cannot do anything to earn an income.

My Chronic Fatigue

I also have constant, extreme fatigue, 24 hours a day, every single day. It is difficult to explain just how bad it is. Every day feels like I have run a marathon and not slept for weeks, even though I sleep for around 11 hours a night and barely move during the day because moving causes so much pain and fatigue.

I am exhausted all the time, and sleeping doesn't make it go away. I often fall asleep in my chair or have to go to bed for a nap during the day because I am just so tired.

Even after sleeping for 10 or 11 hours, I wake up feeling extremely fatigued. Any less sleep than that and I can barely function. Even the smallest amount of movement exhausts me. Getting out of bed or simply moving around feels like trying to move through sinking sand. It is absolutely horrible.

If I do too much, the fatigue gets even worse and can leave me struggling for days afterwards.

I can't type or talk for very long because it makes both my pain and fatigue dramatically worse. I used to work as a secretary, so typing and writing were things I did all the time. Now I can barely manage more than a few minutes at a time.

This is what my chronic fatigue is like. It affects everything I do, just as the pain does. They are both debilitating.

I also have other conditions, including migraines, sciatica and various other health problems that I don't want to go into.

My Chronic Pain and Medication

My pain is extreme.

Before being prescribed fentanyl, my pain was so bad that I was bedbound, screaming day and night. I couldn't get comfortable for even a few seconds, and barely slept because the pain was so unbearable. It was 10 out of 10.

I am now on extremely strong opioid painkillers, at palliative care level, and without them I would be bedbound and in unbearable pain again.

Even with these medications, things are far from easy. They don't work as well as they used to, and I experience severe withdrawal symptoms between patches.

I am supposed to change my patches every 72 hours, but I have had to reduce this to every 48 hours because of how bad the withdrawals are. Even doing this, I still experience withdrawals.

I have been speaking to my doctor about this every three weeks for many years.

The medication also causes side effects and makes my already severe fatigue even worse.

So although the medication helps with the pain, it brings its own problems too.

I spend almost all my time at home, either in bed or sitting in my chair. Mostly in bed.

I can barely do anything other than sit and watch TV. Even speaking and typing can be very difficult. For example, writing something like this can take me days.

My Income and Benefits

My income is now just over £430 a month. That is all I can get.

I cannot get the main disability benefit in the UK called New Style ESA because of the National Insurance contribution rules, despite being recognised as unable to work.

This is one of the most frustrating parts of my situation because working has actually gone against me.

When I was working part time, I wasn't earning enough to pay National Insurance contributions. This is normal for low-paid part time work, as you only pay NI when you earn over a certain threshold.

For New Style ESA, you need the required full years of qualifying National Insurance contributions in the relevant period before applying. The contributions have to meet the requirements for the relevant tax years, and it is the paid contributions from employment that are important.

Because I couldn't physically work enough hours to earn over the NI threshold, I didn't pay enough contributions.

So despite having worked for years, reducing my hours because of my health and eventually becoming too ill to work at all, I cannot get the money from New Style ESA.

I do receive something called credits-only ESA. This means I get National Insurance credits towards my state pension, but I don't receive any money from ESA.

I have been assessed and accepted into the Support Group, which is the group for people who are too ill or disabled to work. The other group is the Work-Related Activity Group, for people who may be able to undertake some work-related activities.

So the DWP has recognised that I cannot work, and I have had to complete the same forms and medical assessments, but I don't receive the actual ESA payment. I only get the NI credits towards my pension.

Initially, I was told that I could use the NI credits from credits-only ESA to qualify for the money from ESA after two years. However, when I went back to them after two years, I was told this wasn't correct. The qualifying NI contributions must come from actual employment in the relevant period before applying.

This means that if it is more than two years since your last qualifying year of NI contributions, you can no longer meet the contribution conditions for New Style ESA. If you cannot work again because of your health, you cannot build up the required paid contributions again, which means you may never be able to qualify for New Style ESA.

It is an absolutely ridiculous rule, but one that still exists, even after the government changed from Conservative to Labour.

I have spoken to every advice charity available, the DWP many times, obtained legal advice, contacted my MP many times and even contacted Parliament multiple times.

Everyone has confirmed the same thing. This is how the rules work, and I cannot get any more money.

I cannot get a penny more than I currently receive, and I will never be able to claim New Style ESA.

Many people assume that if you are chronically ill and disabled, the government will look after you financially. Unfortunately, that isn't how it works.

You still have to jump through all the hoops and meet all the requirements. Being too ill to work doesn't automatically mean you qualify for financial support.

I qualify medically, but because I couldn't work enough hours to pay the required NI contributions, I am excluded from the financial support.

Working literally went against me.

Why I Cannot Claim Universal Credit

I also cannot get Universal Credit because I live with someone, and their income is taken into account.

I cannot afford to rent somewhere independently on my income, so I have no choice but to live with someone.

This means I am stuck in a situation where I cannot afford to live independently, but because I live with someone, their income affects whether I can claim Universal Credit.

I cannot get New Style ESA for the reasons explained above, and I cannot get UC either.

There is no alternative source of income available to me.

Living on Very Little Money

I have to live on just over £430 a month, and that is all I have.

I need regular assessments to continue receiving my PIP, and these are a nightmare.
You have to complete a huge booklet, provide medical evidence and explain everything in detail. Then someone who isn't medically trained makes a decision about your health and disabilities.
The assessment process is incredibly difficult, especially when you are already severely ill and struggle with even basic things like writing and typing.
So many people are refused and have to appeal, sometimes going all the way to tribunal, just to get the support they are entitled to.

I cannot afford anything.
I haven't had heating for about five years now, despite living somewhere that gets extremely cold.

Temperatures outside can fall well below freezing, often reaching -4°C or even -13°C in winter, and even outside of winter as it is cold all year round here. 
Inside my home, temperatures are usually around 7°C to 10°C, and get as low as 4°C to 7°C indoors. Even on a so-called hot summer day, it can be only around 12°C indoors.

I am cold all the time. I don’t even get hot in 40°C heat so imagine how cold I am in the UK when it is freezing all year, especially where I live.

I wear layers, blankets, gloves, scarves and thermals and use a hot water bottle every single day, 365 days a year, just to try to keep warm. Even in "heatwaves" (otherwise known as summer), I am still wrapped up with my hot water bottle.

It is never properly warm here, even in summer, and I would absolutely love to be able to afford heating.
But I can't.

Food and Eating

I also struggle to afford food.

I eat a bowl of cereal a day with skimmed UHT milk as my meal for the day.

I have lost so much weight that I am now very skinny.

I simply cannot afford to buy proper food or eat enough.

This is what living on so little money actually looks like.

Housing and Bills

I cannot afford rent anywhere on my income, let alone all the other bills such as gas, electricity, water and council tax.

I could never afford even a council home on what I receive.

I am not in a position where I can just move somewhere cheaper or find somewhere of my own. I cannot afford it.

I am essentially stuck where I am because I have no way of paying for somewhere else.

I also want to clarify that I don't have a landlord. I cannot afford to rent anywhere, so I don't have a rental property or landlord who I can turn to about the problems with the house. I know people may suggest contacting the landlord or using landlord and tenant rights, but that doesn't apply to my situation.

The Condition of My Home

Unfortunately, the home itself has problems too.

There is severe damp and mould, which is made even worse because I cannot afford to heat the property.

We have a broken gutter and a problem with the damp proof course, meaning rain pours down the walls and windows every time it rains. Water even comes inside.

There is flooding every single time it rains, along with ongoing damp and mould.

The repairs would cost tens of thousands of pounds, so realistically, they are never going to get done.

The mould is particularly concerning because it affects my health, and I would love to be able to do something about it.

I desperately need a new dehumidifier, and I would also love an air purifier to help with the mould and air quality.

Some machines combine both functions, which would be ideal, but these are things I simply cannot afford.

Living without heating makes the damp and mould even worse, but I cannot afford to do anything about that either.

It is a horrible situation to be stuck in.

My Disability and Getting Out

I have a wheelchair as I am an ambulatory wheelchair user. This means I can walk sometimes, but I also need a wheelchair when I cannot manage.

I cannot use it inside my home because the house is too small.

I really need a better wheelchair now, particularly an off-road electric wheelchair, as I can no longer use my current one to get out.

The road outside is in a horrific condition, and my wheelchair cannot manage it.

Unfortunately, the road is unadopted, which means the council isn't responsible for maintaining it. The residents are responsible, but nobody will do anything about it.

So even though I have a wheelchair, I cannot properly use it to get out of the house anymore.

I rarely go anywhere. At most, I might go out once or twice a year.

I spend almost all of my life indoors, mostly in bed.

I cannot afford medical aids that I need, and there are some things that simply aren't available for free anywhere.

I also cannot afford entertainment or the little things that most people take for granted.

There Is No Way to Earn Money

I want to make this clear because people often suggest ways of earning money from home.

I cannot do crafts, make things to sell, complete surveys, work online or do other similar things.

It isn't a lack of trying or a lack of ideas.

I have spent years trying to find ways to earn money because I desperately need more than I receive. But my health is so bad that I cannot manage these things.

I have severe fatigue and extreme pain every second of the day. Even getting out of bed is difficult.

I cannot just find a little hobby or something to do for a few hours to make some extra money.

I physically cannot.

I would love to be able to earn money and support myself, but that is no longer an option.

What I Would Love

I don't want anything extravagant.

If I ever had enough money, I would love to be able to buy a small house, have a car, get a new off-road electric wheelchair and have enough money to live without constantly struggling.

I would love to have heating, proper food, a comfortable home without damp and mould, and the medical equipment I need.

I would love to be able to go out occasionally without worrying about whether I can physically manage it or whether I can afford it.

I would love to have some independence and not have to worry about every single penny.

I would even love to be able to enter the lottery, although I know the chances of winning are tiny. I cannot even afford to do that.

It is not about wanting a luxurious lifestyle. It is about wanting the basic things that most people take for granted.

A warm home, enough food, a safe place to live, being able to get out of the house and not having to live in constant financial hardship.

A Little About Supporting Me

I am sharing all of this because I want people to understand my circumstances and what life is like for me.
I know times are difficult for many people, and I don't expect anyone to do anything.
However, if anyone would like to support me, I do have ways to do so, including donations on Ko-fi and a wishlist.

You can tip here on Publish0x, or on Ko-fi. Nothing ever expected but greatly appreciated.
I also have a Throne Wishlist which replaces my Amazon wishlist (as Amazon now reveal your address).

Even small amounts of help would make a difference to me, whether towards something I desperately need or simply making everyday life a little easier.

Thank you for taking the time to read all of this.

(This post is written by me and is also posted on my Ko-Fi page)