How long will people help us? We have limited life-lines

Scope’s We Won’t Be Forgotten campaign is calling on MPs and Government to listen to the voices of disabled people and take action to prioritise their needs.

In this series of Real Life Stories, disabled people, parents and carers are sharing their experience of life under lockdown, and the impact it is having on their lives.

I'm in the vulnerable group for Coronavirus because of my health problems. I have asthma, fibromyalgia and Crohn’s disease, along with a few other conditions. I’m also a cancer survivor, and suffer from depression and anxiety.

On the days that I am in bed with severe pain or fatigue, I feel like I am failing my nine year old daughter, Morgan. These feelings of guilt and sadness feed into my depressive side. I know I am a good mother but with both physical and mental health issues, I often have doubt. It is difficult to remember the good days when I am really struggling.

I don’t speak much about my own disability at home. I don’t want to be “woe is me” about it, because I don't want to cause further stress to my family, and I don’t really have that much time to be honest. Morgan thrives on an around-the-clock schedule that goes from nine in the morning until bedtime.

Under assessment with the neurodevelopment service, my daughter is having more meltdowns and a greater need for support

Morgan is in the process of being assessed for potential Neurodevelopmental differences, and so last year I got support from Scope’s Navigate service. They helped us to make progress.

But because we’re all completely isolated to protect me, we’re dealing with more meltdowns over things that normally wouldn’t get Morgan that upset.

Morgan needs a really structured routine in order to feel confident about the day. Knowing what’s coming next is really important to her. Normally she’s in school, which provides routine for most of the day.

Before the virus, generally we knew why meltdowns happened. But right now, it could be at any time, about anything or nothing, because her whole world is turned upside down. She doesn’t have some of the anchors in her life that she’s used to and relies on.

We have no family close enough, so a volunteer in the community is helping

We’re on our own as far as relying on people we know being able to offer assistance to do things.

Everyone has really limited resources right now, and their own limitations and concerns. I’ve had friends call me to check in, but the actual network I have for the coronavirus is via a local Facebook volunteer group.

We’ve been paired up with a volunteer from that group who’s helping bring us food and medication. Before then I’d been really anxious. I think having enough food for the family has been a main thing on my mind.

We’re really trying to avoid any possible risk of it coming into the flat. It’s so hard. Our volunteer collects our order and leaves everything outside the door.

I guess food could be another opportunity to bring the virus into the home. We’re just trying to be as distanced from catching it as possible.
 

How long will people continue to be able to support us?

My immediate concern is if I caught the virus, I don’t know if I’d make it through. It might sound dramatic and it's really hard to think about, but it is a real possibility. It is nearly impossible trying to hide these worries.

I think the hardest part will be if this situation goes on for a very long time.

How long are people going to volunteer to help out with things like food?

How long am I going to have someone to go to the pharmacy for me and bring me my medication?

We’re OK for now, but it could be for a limited period of time and then we’re back to having no life-lines.

With us not leaving the house, we’re completely dependent on other people and we don’t have a lot of people to depend on.

Mental health and managing anxiety

I try to relieve my own anxiety about coronavirus by finding out as much information as I can and continuing to make any practical preparations possible.

That sort of helps me with my mental health; to be doing things, laying the foundation, thinking ahead, concentrating on home-schooling Morgan and hoping this doesn’t go on much longer. But this isn't always possible.

It’s fantastic there are people out there who volunteer to help others, but how long will that support continue?

Coronavirus has been a disaster for disability equality. Support disabled people like Melanie and Morgan.

Read more about our campaign to ensure disabled people are included in government plans for recovery and take action.

Together we won’t be forgotten. #WontBeForgotten