Angela – Humans of Avon and Somerset
The effort that went into campaigning and making change will always be worthwhile as I continue to hear other people’s stories about Toxic Shock Syndrome.
It was Saturday, in March 1992, when I started feeling unwell. I finished work at 9pm and spent the rest of the weekend in bed. We called the doctor multiple times as nothing was making me feel better.
The first two doctors that visited on Sunday were sure I had the flu, but when the third doctor visited on Monday afternoon, they called for an ambulance as by that time I was actually slipping into a coma. As I was being rushed to hospital, I had a heart attack in the ambulance. On entry into the emergency room, although I was completely unaware of what was happening, doctors diagnosed me with Toxic Shock Syndrome (TSS), which we now believe was a result of me using tampons.
I was in a coma for a month and was looked after in Intensive Care. My husband at the time moved into a flat attached to the hospital, while his mum stayed at our house to look after our children. All I remember from this time of my life is hearing bubbly noises, people rushing around and curtains being pulled back and forth.
When I woke up, I had to be told about the extent of what had to be done to save my life. Four toes and the heel had to be amputated from my right leg, and my left leg was amputated up to the knee. As well as these physical ramifications, my memory was badly affected, and I couldn’t remember basic things about my life for months after being admitted.
I remained in hospital until the end of May of the same year, and when I returned home there was still a long road to recovery. I had to have regular treatments for the skin graft site on my heel, and regular visits to the limb centre for adjustments until the end of that year. I had to learn to walk again, received home aid for a few months alongside the care of my family, and continued walking practice and physiotherapy until March 1993. While going through all this, I had a marvellous support network of family and friends, who among other things used to take the children to school and take them out at weekends.
The effects of TSS are still present in my life to this day. I’ve an artificial leg but can’t walk very far, and my balance isn’t great, which can lead to falls. I must watch every step when I’m walking and can’t carry things up the stairs. I also drive an automatic car, which I would be lost without. Regular visits to the limb centre are a necessity for adjustments to my prothesis, and to see the podiatrist who treats my heel.
My medical history hasn’t stopped me from working full-time – I’ve been working for Avon and Somerset Police since 2006, starting at Fromesgate House and then the Bridewell. I now work from home, which is so beneficial, as if I’m having a sore leg day I can work without my prosthetic!
When I was in hospital, my mother-in-law started contacting people and organisations, kicking off what turned into months of campaigning for warnings to be included on boxes of tampons about the risks of TSS. Once I had recovered enough to tell my story, I did talks at youth clubs and schools, took part in a big conference in Bristol, and appeared in several magazines, newspapers and TV segments. As well as sharing my story, I continued campaigning for this addition to labelling. My mother-in-law also contacted the Women’s Environmental Network and the Labour MEP for Bristol, and eventually all this activity resulted in a breakthrough.
I visited the House of Commons in September 1993, where I met with the Minister for Health, who confirmed that my actions would lead to the warnings on tampon packages being changed.
I also had the chance to visit Brussels the following year to spread the message in European parliament, where I was paired up with a couple from Manchester who had sadly lost their 14-year-old daughter to TSS. It was such a surreal feeling to receive confirmation that we had made a real change to hopefully save more people.
The effort that went into campaigning will always be worthwhile as I continue to hear other people’s stories. We were contacted in the late 1990s by someone who lived in Keynsham, who was expected to turn up at a BBQ, and when she didn’t, her parents called police to her house. They broke in and found her in a coma, and when taken to hospital she was diagnosed with TSS. A woman in Nailsea shared her story of being at a school camp in America. She started displaying symptoms, and the camp nurses suspected TSS straight away, meaning she got the correct treatment soon after.
A few weeks ago, I was watching TV when a new advert for tampons played between shows. I immediately noticed that there was no warning in the advert for Toxic Shock Syndrome. It dawned on me that without that warning, there could be a whole new generation of people watching these adverts and not being fully informed on how to keep themselves safe. That was part of the reason I wanted to re-tell my story now – to start spreading awareness again since the warnings I fought hard to be implemented were now seemingly being erased.
My aim is not to stop people using tampons, but just to be aware that if you feel ill, they should be removed straight away, and a doctor should be seen. It’s also advisable to alternate tampon use with towels and use the lightest frequency option possible. One of the tell-tale signs of TSS is a drastic drop in blood pressure, which doctors didn’t check in my case. I feel it’s also important for men to know this information as well, as if my husband had been aware, he might’ve suspected the cause of my illness. If I had received the correct treatment straight away, the outcome could’ve been totally different.
I am forever grateful to the doctors and nurses at Frenchay Hospital for saving me. I hope my story doesn’t scare people but gives reason to pause and take a few minutes to research a simple product that so many people will use in their lifetimes.
