Charlotte's story: life with muscular dystrophy during the pandemic

As I’m getting ready to leave hospital following a short admission my respiratory consultant appears looking serious. ‘Try your best not to come back for a while’ he says, the furrows on his forehead deepening.

‘Err, I’ll do my best’ I reply, wondering exactly how this is in my control. I’ve seen headlines about a new respiratory infection in China. I’m not too concerned, but as I listen to him struggle to grasp the right words I decode that he is really trying to say: ‘I think a major world-wide pandemic is about to explode and many people will die.’

Sadly, he’s right.

My husband and I both have muscular dystrophy causing extremely weak respiratory muscles so we rely on non-invasive ventilation. Common colds can prove life-threatening, and each winter feels like crossing a minefield of colds and flus. But it’s becomes clear that Covid-19 isn’t ‘just another flu.’

As a close friend perishes from the disease, anxiety takes root. It’s not just the fear of getting the virus, we worry how the NHS we depend on will cope.

Hospitalised with a kidney stone I can’t access my usual specialist respiratory ward or have a carer with me. Alone for the first time in years, I’m terrified. This deepens when it becomes clear that ward staff aren’t trained in ventilator care. I can’t use my machine when I need it most leaving me breathless and panicky.

The outpatient services we rely on (Muscle Clinics, Cardiology, Physiotherapy etc.) have been stripped to the bare minimum leaving us feeling physically and mentally vulnerable. We’ve also lost family support and holistic care from the local hospice. Suddenly, half of the carers we employ to enable us to live life have to self-isolate. Having a life-threatening illness often feels like walking a tight rope. The pandemic has whipped away our safety net.

Welcoming the sharp sting from my COVID-19 vaccination, I gradually relax and imagine a bubble of protection floating around me. But bubbles can burst. Vaccines are a triumph of science, but have limitations.

Restrictions such as social distancing, mask-wearing, testing etc. help keep us safe. As the threat gradually reduces, and the rules relax, we cautiously venture back into the world. Still, I always sense COVID-19 lurking in the shadows, like a panther about to pounce on its prey.

As the PM explains it’s now time to lift most restrictions an emotional dam inside me bursts. Tears flow down my cheeks. They call it ‘Freedom Day,’ but I don’t feel free. Like many others who remain ‘vulnerable’ my life will now become more restricted.

Vaccines are encouragingly breaking the link between infections and deaths. However, hospital beds are still filling with COVID-19 patients, pressures on our wonderful NHS are increasing, and people with muscle wasting conditions still can’t safely access vital services.

Last week, MDUK presented a report to an All-Party Parliamentary Group outlining the effects of COVID-19 on those with muscle wasting conditions and the improvements in services now urgently needed. It feels good to know our concerns are being listened to. We need specialised, joined up care and timely access to new treatments. In this time of uncertainty, it’s reassuring to know that MDUK will always be fighting for all affected by muscle wasting conditions.

Download and read the report in full.