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Shereena outside in the garden

Nobody is thinking about the vulnerable

Shereena

The beginning of the pandemic was a blessing. It meant I had a rest from working 9 hour days, 5 days a week.

I found my job so exhausting that I really did welcome the first lockdown and the chance to stay home and recuperate without judgement.

I ate well, I exercised and I spent quality time with my husband in great weather.

Being isolated was like normal life with MS

I wasn’t able to work during any of the lockdowns. I work in a shopping centre full of people so the extra restrictions made working impossible for me.

But being isolated didn’t feel any different than normal life with multiple sclerosis. I actually enjoyed the fact other people were isolating just as I had been for years.

My main struggle came from trying to access healthcare. COVID-19 put a stop to many treatments I was using at the time and unfortunately a lot of these haven’t reopened. The extra waiting times I’ve faced have been crippling to my MS. Time is against people with a degenerative disease.

For example, I was put on the waiting list for help with my mobility. This was something I was so excited about, because there was hope I’d be able to get some relief from spasticity. But I haven’t heard anything since I was referred back in 2020.

Getting HSCT on the NHS

The backlogs have continued. The next step for me was HSCT as my condition has deteriorated considerably and all the DMTs I tried brought no relief. It’s a long wait to get HSCT on the NHS at the best of times, but now there are even more hurdles. A month-long process has ended up taking 9 months which affected me mentally, emotionally and physically.

I really was struggling but it was all down to me to seek out support. It seemed like everyone was far too busy to check in with me. And I didn’t want to pile my problems onto an already stressed and stretched health care system.

I had no contact with my MS nurses even though I had undergone chemotherapy and stopped taking my DMT as part of the HSCT process. So one day I tearfully turned to the MS Society Helpline for support.

Being cautious isn’t enough when there are no rules

At the moment I feel more concerned than ever, because nobody is thinking about the vulnerable. I’m now immunocompromised again but there are no COVID restrictions, which means no one looks out for me.

To the public this might seem over the top. But it’s so serious that I don’t even want to see my family members at the moment. I don’t know who they’ve come into contact with and what could affect me.

I’ve been having HSCT for 3 weeks in hospital. It scares me to think that all the amazing care and effort put in by the NHS is under threat because of the lack of restrictions.

By removing restrictions the government is putting us at a higher risk. It’s not fair that we already have to deal with health problems. Now to stay safe we have to stay locked up away from everything and everyone.

Being cautious isn’t enough when there are no rules. There’s only so much you can do alone.