I’m so worried about energy bills that my husband and I have stopped cooking jacket potatoes because they take so much time in the oven.

I even worry about boiling vegetables and using the toaster.

Right now, I have to question every single thing I spend money on. This is because I rely on disability benefits to survive. But the amount I receive barely covers my essential costs, let alone allowing me to live a full, independent life.

I was diagnosed with MS, aged just 21 – only a month after getting married. I’m 50 now, so I have had lived with it for 29 years. I was scared for my husband and myself about how our future would pan out, not knowing if I could have children or keep moving up in my career.

My MS causes me balance and mobility issues, and I rely on mobility aids like my rollator – a mobility walker – and power chair. My condition also affects my vision, causes me constant pain, severe fatigue and a serious form of sleep paralysis.

My husband has to help me shower and do my hair. He does most of the cleaning, shopping and cooking. I can do the occasional little trip to a shop, but it is so exhausting that I really do not feel safe.

I’m not able to work and have claimed benefits for some time. When you’re on benefits, you’re constantly trying to manage your finances and stay afloat. I get Employment Support Allowance (ESA) and Personal Independence Payment (PIP), but it’s really challenging to cope with the amount I receive.

Thinking about the future is scary, it can be easier to bury your head in the sand

This is the first year in 15 years that my ESA has gone up at all. And the increase is tiny – it’s only about £2 a week. What’s that going to get me? Where will I get the hundreds of pounds I need each month to deal with rising energy prices? What about fuel costs going up? Or food prices?

My husband Peter is self-employed in tech – repairing computers – which he fits in around my needs.

The cost of living crisis is making things so much worse. At the moment, we can just about get by and we don’t go hungry, but things are getting tighter. Some days we can only afford a sandwich for dinner, which I know isn’t good for us. My husband has even stopped paying into his pension.

I’ve stopped dying my hair and I haven’t had a hair cut in eight years – my husband just trims it a bit for me. I’d love to go and have my hair cut, it would make me feel so much better about myself. I have had to sacrifice my wellbeing for absolute essentials.

Being disabled means I have extra costs. For example, my MS affects my vision and means I have to buy more expensive glasses – even after a voucher I received, they cost me £650.

I also can’t walk far as my mobility is really restricted, so my husband has to spend a lot of petrol money driving me around.

Petrol and diesel prices have gone up massively. We’re conscious about how much we use the car and so don’t go out a lot. I’m always worried about having enough petrol left for any hospital appointments, as they can be quite a long – approximately a 60 mile round trip – drive away.

Some of the choices we have to make are hard and we are fully aware this is not going to get easier. My mental health has been impacted hugely as I’m constantly worrying about money and feeling under pressure. There isn’t even hope on the horizon – only more doom.

Thinking about the future is scary, it can be easier to bury your head in the sand.

Why should I be left in this situation? I didn’t choose to get MS. I didn’t choose not to work. My husband didn’t choose to be put in this situation, where he has to be flexible with working to care for me.

I welcome that the Government has recognised that help is needed for people like me. However, the £400 discount on energy bills and grants for people on benefits barely scratches the surface of the catastrophic months ahead of us. After cutting everything down, energy alone has gone up by £140 a month, and that is without any heating on at the moment.

The MS Society says they’ve been hearing from people who aren’t able to afford food, medication and transport – and I’m not surprised.

I worry that could be us one day.

If food prices go up more, what will we do? I don’t know what we could possibly cut down on.

If you have MS and are struggling with the cost of living crisis, the MS Society has information about financial support on their website here. You can also contact the MS Society’s free helpline at 0808 800 8000 or [email protected] for confidential advice and support.

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