A woman living with Multiple Sclerosis says she is merely surviving, instead of living, with the cost-of-living crisis hitting her and others with disabilities hard.
Rachel Jeffery moved to South Belfast in 2003, but for the past year, has to rely on the support of her parents, who moved from Swansea to the city to be with her.
Rachel uses an electric wheelchair and only has the use of one arm due to her condition, which means she requires a lot of support.
Read more: West Belfast sisters in Communion clothes donations and fitting room drive
"I've got my powered wheelchair, I've got my profiling bed, my air mattress, my overhead tracking hoist on the ceiling, my mobile hoist and my toilet is electric, because it's a washing/drying toilet," she told Belfast Live.
"So that's six items that I have to have in my house, that have to be powered, some of them need power constantly.
"Things like this are the unseen costs of disability.
"Some of them, I've been either getting my parents or carers to turn off, as I can't access all of the switches."
Rachel is also badly affected by the cold, which can really worsen her symptoms.
"We already think about when to use heat and I’ve bought little ethanol heaters to take the edge off the cold without using the heating. But I can’t move around so I do tend to be colder and cold makes my symptoms much worse," she said.
"Because I cannot be cold, my body sets itself out rigid when I get cold, movements would be like moving through water and on really bad days, like moving through treacle.
"The colder I get the stiffer my muscles get, so the emphasis on keeping warm is quite strong."
She said she is thankful that she has her parents with her and appreciates that for others who don't have that support, it is even worse.
"Because at the time, last January, the Trust had been unsuccessful in finding me carers and I had been unsuccessful, then without mum and dad, my daughter Georgia would have had to give up her A Levels again to care for me," she added.
"Georgia is 23 now, she had to put her A-Levels off a couple of times to help me out.
"So I was determined that last year, she was going to finish them and she was going to university.
"I would feel like a personal failure if that hadn't happened and if it hadn't happened because of me.
"She's far too lovely and selfless to leave me, so if I didn't have anything else in place, she would never have gone.
"Because she would have felt that she wasn't able to."
Rachel said she had been receiving help from the MS Society In Northern Ireland, with the charity helping her to hold meetings about the level of care that would be provided for her.
She said she now receives help from an agency, but it is still not enough to allow her parents to leave her.
She added that the cost-of-living crisis was a conduit for those without disabilities to see the daily struggles those living with disabilities faced.
"Ordinary things are always more expensive for people with disabilities, anything that has a blue badge attached to it will generally have an extra £10 added to the price," Rachel said.
"The rest of the country is now catching up where their power isn't lasting as long, which has always been the case for me, having to power the six bits of equipment that I need.
"It is survival - I'm not doing any living at the moment, and I haven't been living for a long time.
"All I'm doing is trying to get through one day into the next day."
Rachel went on to say that she was so grateful to be living in Northern Ireland and said that her experience of Belfast had been a largely positive one, as she approaches 20 years of living here.
"Luckily I live here and people are more family-orientated and just seem to be more compassionate than had been my experience on the mainland," she said.
"I try not to think too much about the future because the present is all in limbo."
For the MS Society NI, the cost-of-living crisis has been severe, to the point where the charity has been forced to close its South Belfast building for two half days per week which impacts on the services it can deliver.
It recently wrote to Claire Hanna, the South Belfast MP, to highlight the dire need it has for the Energy Relief Support Scheme, which is being reviewed currently.
Ms Hanna then visited the charity to hear first-hand about the issues it faced and how they could be alleviated.
"To give you an idea of our increases, in 2021 we paid £4160 for our gas," the letter read.
"In 2022 we will have paid £9975 (that includes the EBRS discount which equates to approximately £400 per month we’ve received from October 2022).
"That’s an overall increase of 140%. We anticipate, if there are no further increases in the price of gas, we will be paying a further £4100 to heat our building in January, February and March.
"That is the same amount of money it cost us to heat our building for the whole of 2021."
The charity is projecting that its gas costs for 2023 will be £14,400 (compared to £4160 in 2021), and its electricity costs £9600 (compared to £4080 in 2021).
The MS Society provides help and support to over 5,000 people living with MS in Northern Ireland.
It provides a counselling service, specialist physiotherapy, physical activity classes as well as many social, emotional wellbeing and other activities.
It has urged the government not to leave it, and the vital services it provides to the community, behind.
READ NEXT:
- NI £600 energy payment: How Budget Energy customers can check status of their voucher
- Energy Support Appeal launched by Community Foundation NI to help those most in need
- Cost of living crisis: NI care workers stage protests calling for improved mileage rates
- Northern Ireland mum on struggling to make ends meet as unpaid carer
For all the latest news, visit the Belfast Live homepage here. To sign up to our FREE newsletters, see here.
