Pain is something I have to live with, being cold and hungry is surely not

For a while now I've been searching for somewhere to channel my frustrations and concerns constructively and effectively. When I first saw the link to the Changing Realities project on social media, I knew instantly, it was something I could and should get involved with. Changing Realities satisfies my need to express dissatisfaction with systems which urgently need real change.

As a disabled parent, and grandparent, I already know of struggle, hardship and lack. Lack of physical control is demoralising enough. I may lack mobility, but I do possess the wherewithal to speak out about matters important to me. And I have been listened to and my situation acknowledged and addressed. For someone like me there's no direct control over what is happening in this country and if I can change that by taking positive action to address matters which affect millions, as well as myself, all the better for everyone. I'm driven to speak out through shared experience. Something seriously has to change for the better sooner, than later.

This year has already been an immense battle to keep afloat financially, emotional and physically. We've been living in economy mode for as long as I can remember. My hospitality has been taken advantage of and abused as my middle child struggled in a difficult relationship along with their own parenting responsibilities. Hence, my youngest and I have already had to stretch our money as far as it would go, prior to the current cost of living difficulties. My experience is relevant and real.

Living with a pain condition means not only am I unable to mobilise, but I also lack energy as pain is draining. In fact, pain is an attention magnet I have to live with but being cold and hungry within your own home is surely not. I'm dreading the heating and shopping bills this winter.

On top of everything, due to a non-fault eviction from the home we had loved living in, we are still recovering from the expense of moving home in April. The landlord needed to sell up. As a tenant, I had no rights and no protection. We were seriously compromised every which way we turned. Other than throwing ourselves on the mercy of the local authority, which couldn't proceed without correct official papers, there wasn't much choice but to leave the old place quickly. The landlord purposely avoided the inconvenience and expense of serving us with official papers. He offered us the opportunity to stay put longer, but for more rent with no safety net when the time was up. Consequently, we took the best we could as soon as we could.

We feel we've had more than our fair share of bad luck and misfortune in recent years. Now with a cost-of-living crisis to contend with, I long to be able to have my heating operating the 7 hours plus per day we used to enjoy from October to March. We've cut back on everything we possibly can cut back on. The laundry, vacuuming, and the cooking.

As winter approaches, we are faced with uncertainty and anxiety. We can only estimate how efficient the heating system here actually is. The oven is proving expensive to cook in. I'm not sure we can stretch to buying an alternative cooking appliance. Also, due to disability, I need to buy more pre-prepared foods or order more expensive online groceries with delivery charges. I receive extra to cover this cost but lately I've noticed how little my money actually gets us. It's really quite depressing to see our money chewed up so readily.

Despite anticipating financial strain since April, we are still no better prepared. Situations cropped up for my family during recent months. Any rainy-day money I had spare, now gone.

Stress makes my condition worse. There's an existing 'smart' meter here, say no more. Even my youngest is mortified looking at the clock tot up pennies into pounds. Everything we use is associated with cost nowadays. We've been sharing the same bed to save money heating two bedrooms.

During the summer, cutting back on showers caused a health crisis I can't afford to repeat. I've since found the economy switch on the shower, but even so I'm far less inclined to bother having a cold shower within a cold house. Besides, I don't really go out or see anyone day to day anyway. Ultimately, at the back of your mind there's the smart meter racking up the cost all the time.

Bottom line is, I personally find there's simply not enough clarity about anything regarding the cost-of-living crisis. There's obviously next to no official guidance either from what I can tell. Yet, here we are on the cusp of winter, speeding full steam ahead into the most expensive time of year for the vast majority of folk. To term it a choice between 'heating or eating' is a massive understatement. It's also the knock-on effect of increased groceries that is causing people to go hungry. I tend to eat the out-of-date products to avoid waste as is.

Not once have I heard a clear explanation in layman's terms of what £2500 for an average household actually gets you for your money? Has there been something publicised and I've missed it? In my opinion, it's irresponsible on the part of the energy companies and the government. I'm no mathematician able to calculate watts and usage based on what we didn't spend here last year. It's impossible to speculate. It feels like we are going backwards in this country. When I was growing up we didn't have central heating on often but at least there was always a fire in the living room to warm ourselves on.

Daytime, it's easier to keep my coat on at home. Heat the person, not the home. I've been filling a flask with boiling water to use later during the day. Even then I question whether it's more expensive to boil larger quantities of water than it would be boiling 1 cup, or do I microwave it to save pennies? It's actually warmer to sit in the car but it's been with the mechanic a full week already with no sign of its return any time soon. This brings more unwelcome expenses to factor in. Until it's repaired, I'm housebound unless I pay for taxis. There's currently no bus service close enough for me to access independently.

Typically, I'm a fairly resilient person and bounce back from situations but it's long since become tiring as I'm preoccupied with doing all I can to save money whilst consumed by staying warm. I'm deeply concerned for us all. Are the government looking to give us the final push into destitution and depression?

Posed with the idea of having to endure and sustain living with these increased costs for a long time to come I worry about the effects on the mental health of my youngest. I have a good deal of self-awareness myself, however, it's becoming more difficult to keep compromising our sanity like this i.e., dithering over how far our finances will continue to stretch.