I’m scrimping and saving, but still running out of money
I’m terrified of what’s to come.
I’m watching my money very closely and I have a tight budget. But I’m already in arrears with my electricity and gas. I manage my money fortnightly — I scrimp and save, but there’s still been times when I’ve run out.
At the end of the fortnight, it can sometimes be beans for dinner for several nights.
The cost of leaving the house
I’m reluctant to use my car in case there isn’t enough petrol in an emergency. The cost of petrol has gone up so much — £10 used to last me for a fortnight, but now it goes so quickly. I’m unable to walk far and my car is my lifeline to the outside world.
For years and years I’ve been meeting with a group of friends for dinner once a month. I’d put the dog in the kennels for the night and get the cheapest taxi I could find. Now it’s too expensive to get there. Not being able to do social things like that is tough, emotionally. I miss spending time with others.
I live with primary progressive MS
I was officially diagnosed in 2018, but I think it's something that actually goes back a lot longer than that. Back in 2013 I was wrongly diagnosed with ME. But it was in 2017 when I started to struggle at work. I wasn't able to decipher things. I couldn’t understand spreadsheets, which I've always been really good at.
I can’t work anymore, so my income comes from benefits like PIP and ESA.
Living with MS means I use more energy
My symptoms make many day-to-day activities difficult, including cleaning my house. I did have a cleaner to help me, but now I can’t afford her. I’ve stopped using an oven as I can’t bend down, so I use my microwave or the hob. I can’t hang my washing out, or do the dishes – so this means I use more energy for things like the tumble dryer and dishwasher. And I use an electric wheelchair, which I also need to charge.
I have other extra costs as a result of my MS. I’ve problems with my bladder and was introduced to period pants — they are amazing. But I can’t afford them.
I don’t know where else I can cut back
I’m utterly scared of the months ahead. I can’t believe I’m in a situation where I have to think if I can afford every little thing.
The government say they’re going to drop taxes. But how does that help people like me, a disabled person living on benefits, like millions of others?
They need to start looking at whose needs they are prioritising.
Tell the UK Government: it’s time to act
Sign our petition to call on the UK Government to urgently roll out a new cost of living package to support people with MS to survive the winter and beyond.
You don't have to face challenges alone. Find out about extra financial support you could get, as well as disability benefits.
You can also speak to our MS Benefits Advisor through our MS Helpline on 0808 800 8000 or email [email protected].
