I'm disabled but was told I won't receive critical care if I get Covid. It's terrifying

Towards the end of last year, I’d just got my life back on track after a long stay in hospital. I was discharged with round-the-clock care that transformed my life.

I am disabled and the care package I was on before I was admitted to hospital didn’t provide enough support; I was admitted to a ward with problems associated with a lack of care, including malnutrition and serious pressure sores. But then I was given a personal health budget from my local authority, with responsibility for employing care workers, rotas, management, training and everything else you can think of.

As a result I got off benefits and into employment – but then Covid struck.

By February I was alert to the threat that coronavirus posed to me. I’m in a wheelchair. I use a ventilation machine at night and by early March, I could see that if I were to catch Covid-19, I’d be in serious trouble.

I had to furlough one valued care worker because she also worked in a busy shop. I felt the risk was too high. Another went abroad and unfortunately got coronavirus there, though she returned safe and well. I had to make it clear to the other four members of my team that if they had the slightest hint of symptoms, they weren’t to come in. This was difficult because I can only pay statutory sick pay, which isn’t enough to live on. I have a really supportive team so was relieved when they accepted this.

At the end of March, I discussed the risks with my GP, who made it clear I was in a very difficult situation, where the factors that made me extremely vulnerable to coronavirus would also put me at low priority for critical care if services were overwhelmed, and that, if necessary, ventilators would be prioritised for people most likely to survive.

I was left feeling devastated. I did as much research as I could around how to treat people with coronavirus. I did everything I could to set up intensive care-level treatment in my flat, for fear that I would catch it at a time when services were too overwhelmed to treat me. It was a terrifying and frenzied period.

Some of my care workers fell ill with suspected coronavirus and I found my rota couldn’t manage if someone was off sick for three weeks. I requested that for every shift someone worked, they do another on call in order to ensure I had cover when people were off. This ate into people’s weeks and risked them overworking if others went off sick.

As a result, I was without care for a number of hours on several occasions. It’s a really significant risk for me to be on my own.

Related: A phone call can't make tea: how UK's lack of social care is hitting disabled people in lockdown

I struggled to get personal protective equipment (PPE) for my staff. I spoke to the council, which had very limited PPE. I was lucky that my girlfriend managed to source some. I made shifts 24-hours long instead of the usual 10-15 hours in order to minimise handover and potential exposure, and everyone had to change into clothes I provided on entering the flat.

I really struggled. I felt resentful because after I was in hospital last year, I got out and had a short period of having a care plan that worked for me and let me live a normal life for the first time ever. Coronavirus hit and I was inside for three months.

Now I feel as if I no longer know what’s safe. I don’t know if things are getting better. The world is opening up but when is the next wave of the virus coming? I’ve started going out late at night, since shielding ended. I’ve tried to develop a new normal but it’s really stressful.

I’m terrified – if I catch Covid-19, will any of my care workers come in? They’ve all got people in their lives that they won’t want to infect. I honestly don’t know what I would do in their situation.

I am so appreciative of my team. Some of them worked incredibly long shifts when another person called in sick. This pandemic has shown the absolute dedication of so many people who work in care but I feel let down by support services, the local authority and the government because of the lack of preparation, support, and information.

There’s been a network of disabled people swapping tips and we all feel the same. There’s a lot of misinformation and panic going around. We’re not being given accurate and honest information, or the resources we need to protect ourselves.

The media and wider society never talk about how many deaths of disabled people there have been from coronavirus. The disabled people’s movement has been highlighting for years about how care homes are used as a way of warehousing people until they die. This pandemic has underlined how afraid I am of being put in a care home – something I have been threatened with, due to the cost of my care package. In a care home I may not have survived this. In my own home, so far I’ve stayed safe.

Some details have been changed

If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare during the coronavirus outbreak, get in touch by emailing sarah.johnson@theguardian.com