"I need to stay warm to manage my pain levels, but I can’t afford the heating bills"

Hi, I'm Jean and I have Hypermobility EDS. Outside the home I use a wheelchair, or a walking frame on very good days or for short distances.

I am really worried about the increasing costs of energy. In general, I am not as confident in the future as I was this time two years ago and I should be as my health is better.

I need to stay warm to manage my pain levels, but I can’t afford the heating bills

I need to keep my home warm to stop the arthritic-type pain in my joints which is one of my most disabling symptoms. I usually have the thermostat set to about 24-25°C but this winter, I have had to have it lower than that at around 22-23°C because of the extra costs.

To keep warm, I have to spend all day in bed. I have two duvets and four blankets, so I can change how many layers I am under depending on how cold I feel. I also rely on reusable microwave heat packs, and I wear two layers of clothing as well as being constantly in my dressing gown. Wearing more clothes and having more layers of bedding means having to do more laundry which is also expensive.

I am extremely clinically vulnerable to COVID which means I have rarely left my home in the last two years and trying to stay warm makes this even harder. I have noticed a change in my mental health, and I am becoming much more insular and subdued.

I was able to negotiate a fixed term contract paying £70 a month combined for gas and electric, but this is due to end in June. If the fees increase for a new tariff, I don’t know where I'll find the money.

Because of rising energy prices, I can only afford to eat one meal a day

As it is with rising costs, I only eat one meal a day because I can’t afford to buy more food.

I have been trying to shop around to get cheaper food, but I only get three hours of shopping assistance care a week. My carer’s got to be at my front door at the start of the three hours, we’ve got to drive to a supermarket that’s got parking attached – so that restricts us on which supermarkets we can use, especially as 90% of my local shops aren’t wheelchair accessible – we’ve got to do the shopping, pay for it, pack it, get it into the car, drive home, and unpack it within those hours.

So, we’re restricted on where we can go, and I don’t have time to try multiple stores. Online shopping isn’t an option as I have to be really careful with ingredients and cannot allow substitutions due to food allergies and IBS.

I try to pack my one meal with as many vegetables as possible as I have cut out meat as one way of trying to save money. I don’t have the energy to stand in the kitchen and cook frequently, so I focus on big pots of vegetables in sauce that can make several meals in one session.

This must be having an impact on my health overall but by now, I am so used to it that I actually become nauseous if I try to eat a second meal.

I am really worried about increasing energy costs

I used to get the winter fuel allowance (£140 extra), but I had to change energy provider due to a dispute over their customer service, and my new provider isn't signed up to the scheme.

Previously when I had financial difficulties, it was suggested getting rid of the cats I had at the time to reduce costs. This has left me too worried to ask for help because I have my 12-year-old Jack Russel who I’ve had since he was seven weeks old. I made a commitment to look after him for his entire life and I couldn’t ever get rid of him. It would destroy me if I lost him.

Over the last three years, between the pandemic and being too ill to work, I have decimated my savings just to keep my head above water.

I manage my money strictly and budget well, but with costs rising, my benefits do not cover everything, and I cannot see where I can cut back any more without it affecting my health negatively.

Scope offers free energy and water advice to disabled people, helping them to manage their energy and water needs. Find out more about Disability Energy Support.