Impossible choices

The rising cost of living is a conversation that isn’t likely to cash out anytime soon. Not just in the disabled community. Many people/families will be faced “impossible choices in order to survive”

Soaring energy prices, increasing fuel and food costs, it can feel like you’re being held hostage by energy companies and forced to make difficult decisions between choosing essentials like fuel, medication or skipping a meal.

It’s a scary path no one wants to be on.

Yes, we can all make those small changes like tuning lights off, but what happens when everything from my powered wheelchair, cough assist Machine that helps keep my lungs clear, hoist and bed just to name a few on a long list are all essentials that all need electricity. For me to be able to live and have a good Quality of life.

Having Muscular Dystrophy Progressive muscle wasting disease, means I can feel the cold even when we have temperatures of 20 degrees, keeping me warm is a matter of staying at home or finding myself in hospital seriously ill.

An example, the winter months for me. Heating is normally set at 20 degrees and I will still have a blanket with an electric heat mat (it’s like a giant hot water bottle even shaped like one) on my lap, my legs and body will still be cold. At night I turn my heating off but sleep with my electric blanket on sometimes all night long.

Another example is I have a wet with an electric shower I can’t just jump in jump out and have the “recommended“ 10 minute shower to save on electricity it takes just over an hour to give me a shower.

In 2019 Scope reported the cost of living for the disabled community was greater. On average faced extra costs of £583 a month and 1 in 5 disabled people face extra costs of more than £1,000 a month. One can only imagine what that has risen by now.

As the UK braces itself for a rise in energy bills over the winter months, it’s a waiting game on how or if help will come. Leading disability and poverty charities including Scope, the Joseph Rowntree Foundation (JRF), Leonard Cheshire, and the MS Society have said that disabled people and their families will be put under severe financial pressure. It’s important for me to mention it’s not just the Disabled community many working families will be struggling to make the hard choices.

The warning is how do we choose? disabled people could be pushed if not already in order to prioritise keeping lifesaving medical equipment such as ventilators running, as well as other vital goods. Disabled people typically have higher energy needs than the wider public, while being more likely to be in poverty.

Are we really being asked to “ride it out” Or are those just easy words for someone who probably doesn’t have to make drastic life decisions. I think it’s a huge insult to think we’re not already trying to save money where we can because everything is becoming something we think about. We have to in order to remotely survive!

Helen Walker, chief executive of Carers UK, reportedly said to journalist Francis Ryan at The Guardian. They were seeing “unprecedented” financial worries from unpaid carers and those they care for.

“Many already face additional costs which they have to cover themselves, from specialist, life-saving equipment for someone who needs it to extra care costs. In our latest survey of 3,300 carers, 42% thought that in the coming months they would not be able to heat their home to a safe level and 32% are worried they will have to use a food bank … Thousands more are being pushed into poverty that will have a lasting impact on their finances and quality of life.”

‘I will openly admit I’m petrified going into winter and the thought of what it might bring.

If you are struggling please reach out to those charities that can help or put you in touch with those that can or even if you just need to vent.

Until next time

Kisses K

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