I’m worried about what to cut next if costs increase

Thu 27 October 2022

Adeyinka Kilani

The rise in the cost of living has affected me in so many ways.

I haven’t been all that socially active because of cognitive issues, but that’s worsened now. I used to enjoy meeting up with my MS support group for a meal. But I can’t afford to do that anymore.

I have family members I’d love to visit but can’t because of the cost. Using the train has become so expensive and driving long distance is out of the question for me. This has put a lot of strain on some relationships. It’s been almost impossible to explain why I look fine physically but can’t travel far.

I’m naturally very friendly and love meeting up with friends and family so not being able to see anyone now is very upsetting.

The financial impact of having MS

My worst fear is losing my job. Soon after I was diagnosed in 2008, I was working on a contract and was let go. A relapse should not lead to the loss of a job.

Now I work part-time with loads of adjustments to accommodate MS. My current employers are really understanding. Cognitive problems are my biggest issue and I’m getting an occupational therapy assessment to get support with that. But the fear of losing my job never leaves me, because I know things are gradually declining in my body.

Read our information about MS and work.

Since my diagnosis, I’ve set new priorities. My new diet has become my focus and paying for leisure activities has gone down the list.

I never get a seasonal break from paying high energy bills, as I need to keep my home at a certain temperature all year round. Because of my MS I really feel the cold. My feet are permanently cold.

I’m really worried about the coming winter

I’ve already stopped activities for my son and me, including our swimming. We were both learning to swim and beginning to enjoy it. I found it a good exercise to do for my MS, giving my whole body a workout.

I’m really worried about the next thing I’ll have to cut if costs go up any further. I need more support from the Government to help me through the energy crisis.

And I’d love more employers to know that with the right support, lots more of us can remain gainfully employed.

When it comes to PIP, my last renewal was so stressful because I look physically OK. So they questioned me on things like being neatly dressed. And being able to push my son’s buggy to the appointment – even though I had found it a struggle.

Simplifying the PIP renewal process would also make me feel more confident about the future.

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.

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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].