My illness has left me in lockdown for five years
There are many days and sometimes weeks when I can’t leave my house.
When I do, it’s usually just for a few hours and has to be planned like a military operation. I’ve lived like this – on longterm lockdown – for more than five years due to colitis, a severe inflammatory bowel disease.
Last year, I created a piece of art, called A Gut Feeling, to represent my illness.
It depicts intestines in a nest. The nest represents my bed, my place of comfort from the pain and chronic fatigue, the empty pill packets and drips which line it allow me to thrive. The discarded rings alluding to the break-up of my marriage. A torn business card, my career on hold. My intestines inflamed and knotted.
Although I loved art at school, I never really did anything which I would have termed as artistic since, but I am so proud of this piece and the struggle it portrays.
My problems began in late 2014 when I was unable to keep food down, passing blood, chronic diarrhoea and my weight plummeted to 5 stone. I was 47 and in constant pain, back and forth to doctors and in and out of hospital.
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After two years I was diagnosed with severe pancolitis. Every 30 minutes in the UK, someone is diagnosed with Crohns or colitis, and there is currently no cure.
Prior to this I had been happy, healthy and enjoying my work as an actress and photographer with an active social life. Now I was in agony, taking 23 tablets a day and unable to leave the house without a wheelchair.
On my second admission to hospital in 2015 after I was found unconscious, they couldn’t find a pulse. I only had 60 per cent of my blood remaining and had to have an urgent transfusion.
By then I looked skeletal and my self-esteem was at an all-time low. I couldn’t bear to see myself in the mirror and people kept asking if I was on drugs or had an eating disorder. I also developed osteoporosis.
My 10-year marriage ended and my life changed forever. For months, I didn’t want to carry on, I felt I had nothing to live for. I didn’t want to take yet more pills, so the Samaritans and counselling became my lifeline.
Gradually, I regained some weight and strength and didn’t need the wheelchair I’d relied on for up to three months because of the osteoporosis and my legs not supporting me. I moved into a new flat, which was a good thing and a fresh start. I am a fiercely independent. I still find it hard to ask for help when needed.
A normal day out to me requires a lot of energy, which because of the constant fatigue, I don’t always have.
Creating art takes my mind off my pain and helps other people to understand what it’s like to live with this illness. I got back in to art as I found I had plenty of time on my hands. It was always something I had enjoyed at school. Never in a million years did I think it would get the attention it received. I still have to pinch myself at times.
My art has been well received and I have been told it’s powerful. In October it was exhibited at The Guts and Glory Gala at Sony Studios in Los Angeles and it will feature as part of Body Worlds online social media campaign when they reopen – hopefully later this year.
I still have to take up to 23 pills per day (yes, I rattle!). I don’t eat or drink, apart from sips of water, from 6pm to 6am to give my digestion system a rest, something that was recommended by medical staff. That means I rarely go out in the evenings or attend parties or dinners. I joined a network to connect with people who understood what I was going through, so I didn’t feel so isolated and alone.
Three years ago, I was made Ambassador for the My Crohns and Colitis Team network and now raise awareness and advise others. I hope I can make them feel like they have some support and they are not the only one dealing with this.
It feels good to be able to give something back. In January 2019 I was nominated as one of the Mayor of London’s Unsung Heroic Women. It was a huge honour.
When I first realised the extent of Covid-19 it triggered flashbacks. It’s hard not to become scared for the future, especially those of us who are already housebound because of an illness or disability.
I think I was prepared for lockdown more than most. I didn’t really notice a change for the first few weeks. The main thing was missing seeing family and friends. I tried to stay strong, but of course it’s hard to be strong all the time. I have had days when I felt really down and upset, but calls and messages help.
The pandemic has made things more difficult in that I have had problems obtaining my regular medication. I was initially given a substitute for one of the pills I take and they affected me badly. I have difficulty standing for long periods which makes things like essential shopping a problem if there is a long queue at the supermarket. I fainted in the bank a few weeks ago.
I had to go to A&E last month and was terrified as it was the last place I wanted to be. I wore a mask, gloves and had a large bottle of hand sanitiser with me. The staff were fantastic at reassuring me. Obviously, like everyone else, I miss seeing family and friends and it’s easy to feel down.
For me, the world stopped five years ago, but I’m determined to do what I can to help others. I am still able to help people online and when I am well enough, I also deliver shopping and medication to elderly people in my area. We will get through this, call it a gut feeling.
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