The past year has been extremely scary for many people with disabilities. The idea of catching the virus if you have a health condition is terrifying as there is a strong chance that Covid-19 could be detrimental to your life.
Debbie Cannon, who has cerebral palsy, caught the virus in November 2020 and almost lost her life to it. Here, she shares her experiences of having Covid-19 and how difficult it was being in the hospital without her family.
On 18th November 2020, I woke up unable to breathe and feeling extremely hot. Just before that day, my husband and I had done a Covid-19 test as our daughter had a positive result – we had the same.
Dave, my husband, called an ambulance and told them we’d had a positive test. I was put on oxygen in the ambulance and taken to the hospital nearest to me.
Dave was in tears as he thought I might not come home. I was quite ill by then and not totally sure what was going on around me.
Being in hospital with Covid-19 as a disabled person
I ended up going into the Intensive Therapy Unit (ITU) for five days. I had Covid-19 and pneumonia on one of my lungs. If both lungs had been affected, I don’t think I would have made it.
I was put on a Continuous Positive Airway Pressure (CPAP) machine, and given antibiotics and diazepam as was having lots of spasms. But I only knew this when I read my discharge letter.
I had to have a tube put up my nose to administer all my food and medication because I tend to cough a little when I drink.
This procedure didn’t hurt, but it wasn’t straightforward. After three failed attempts by one nurse, they had to get a more experienced member of staff to do it, which, thankfully, he did.
After being on this for a few days, I was told that I could eat but only pureed food, which was disgusting.
Aside from the tube, a lot of my memories of that time are blurred and I only remember the last day of being in ITU when they moved me into isolation.
I was put into a room in a new building specially built for Covid-19 patients. There were about 25 rooms, all of which were very bare – the only things in my room were a clock and bathroom.
Awareness of disabilities
One of the hardest things for me, aside from the Covid itself, was seeing a number of nurses struggle to properly understand my disability. It appeared that they had no knowledge of how to care for a disabled patient.
As I have cerebral palsy and limited mobility when not in my wheelchair, I couldn’t do anything but lay in bed. I had to ring the buzzer if I needed anything, but I lost this several times. If I hadn’t been able to use my hands, I would have just had to wait until someone came in.
I couldn’t use a bedpan because it was too uncomfortable, or a commode because I was too tense, so I had to lay in bed and go on a big pad. That was degrading, but I eventually got used to it. I had a catheter when I was in ITU, which I didn’t realise until later.
Having had that in place for a couple of weeks, I developed a lazy bladder, which meant I could not pass urine at all and it was very painful. I also couldn’t go fully. I eventually had to be given three enemas to get my bowls going – not a pleasant experience.
The nurses said they weren’t allowed to get me out of bed because they had to use a hoist and they didn’t know how to use it, so the first time I got back into my wheelchair was when the physios came around.
By that time, I was so weak that I couldn’t even hold my head up. This was particularly scary as I’m quite independent at home.
On the first day with the physio, all I could do was move around to sit on the edge of the bed. That was really hard work. I was given neck exercises to improve my strength, and I did get better.
The physio asked the nurses to get me up at the weekend by using a hoist. But they refused to use it, so I was stuck in bed.
It was frightening as my muscles can waste away quite quickly. I was also dying to have a bath as I hadn’t had a shower for four weeks or washed my hair.
Every weekend the physio asked them to give me a shower but they never did. In total, I was in that room for 17 days, pretty much bedbound.
After this, I have moved again twice. The final move was to a standard ward as I was no longer contagious by that point.
Once, when a few of the nurses were washing me, I had a spasm and accidentally touched one of their aprons. The nurse claimed that I was hitting her, which is the furthest thing from the truth. As a result, every time she came to my bed, I had to hold my arms down across my chest.
No visitations allowed in hospital – even if you are disabled
No visitors were allowed in the hospital – I found that incredibly hard. I had never been away from my husband for that long.
Once I was well enough to go home, I was told by one of the nurses, who didn’t seem to understand my condition either, that I needed a care package. By then, I was back on my feet and able to transfer, but they did not listen.
My care routines are very different at home because the rooms are set up for me and I’ve got all of my aids. This meant that in the hospital I appeared to be a lot more dependent.
There were three other disabled people in the last ward I stayed in. One of them was a young girl and who couldn’t talk.
I could see that it was incredibly hard for her. She had lost all independence and in any other situation, her mum or a PA would have been there to be her voice.
NHS England’s visitor guidance was changed to permit access to “people who are in attendance to support the needs of the patient, for example, a familiar carer/supporter/personal assistant”.
Living with long Covid if you have a disability
It was the best feeling being able to go home with my husband and our daughter, Courtney. During the first few days I was in the hospital, my husband was told I wouldn’t make it, so it was a huge relief having me home.
Even though my husband and I are both 95% better, we do have some long Covid symptoms.
We both still get out of breath, and I get really bad fatigue and memory fog. The doctor said this is normal and will get better in time as my body has been through a lot.
Covid-19 is not like flu, and it is extremely difficult to get better, so people should take care – trust me.
By Debbie Cannon
Last year, our writer and disability activist Fleur Perry campaigned to get NHS England’s guidance on visitors changed so that disabled people can have someone with them to support their care needs.
However, this hasn’t always been abided by all hospitals across the country. If you think your hospital needs to update its policy, use Fleur’s template letter.
More on Disability Horizons…
- Covid-19 vaccines: how they work and who is eligible if you have a disability or chronic illness
- The impact of Covid-19 on disability and employment: make your voice heard
- How I’m keeping healthy and happy during the Covid-19 lockdown
- Covid-19 essential items are available on the Disability Horizons Shop