‘Is this what dying feels like?’: My experience with Toxic Shock Syndrome

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‘Is this what dying feels like?’: My experience with Toxic Shock Syndrome

It’s a life-threatening condition you can get from leaving in tampons

At just 18 years old, Katie Knight nearly died from Toxic Shock Syndrome. TSS is a rare but life-threatening condition caused by bacteria getting into the body and releasing harmful toxins.

It’s often associated with tampon use in young women, but it can affect anyone of any age – including men and children. Katie was hours from death, and spent nearly a day lying delirious in her bedroom before her flatmate came in and found her. She managed to come out alive, but it was a traumatic experience that took a year to just physically recover from. Now, she wants to share her story to spread awareness of TSS, because terrifyingly, it can happen to anyone.

Here is her story.

I was always pretty careful with tampons – I never exceeded the recommended time and wore extra absorbent ones on nights out.

It was my first year, and I was stressed from deadlines. Finishing an essay in the library, I started to feel tired and nauseous. Thinking that it was probably hunger, I went down to the café and bought a coffee and a cookie, which I decided was bound to do the trick – it didn’t. It crossed my mind that perhaps the nausea was connected to my period, of which I was about four days into, but usually by this point all cramps have subsided and my period is relatively light. The nausea quickly became unbearable, and so I took a taxi back to my halls of residence, as I felt I couldn’t have made the walk home without vomiting. No sooner was I in the door than I was aggressively sick, following which I went to bed.

This pattern continued through the whole day, probably nearing a total of fifteen toilet trips and sleeping in between times. During one of these toilet trips, I decided to try and take a shower. I remember trying to stand in the shower but I felt exceedingly tired, and lay down.

I vividly remember thinking “is this what dying feels like?”.

Katie before she got sick

I fell asleep on the floor in my shower, I’m not sure how long I was sleeping for, but at some point later I almost heard a voice inside my head tell me to get up and find somebody. This feeling was so infuriating, as I really wanted to be able to call for help, but I felt trapped as I wasn’t able to think coherently. Unfortunately I didn’t find somebody, and returned to bed again. At the end of this day, my recollection becomes less clear, as I was really beginning to struggle severely with dehydration.

The next day followed a very similar pattern in that I was up and down to the toilet all day, but instead of vomiting, I was now experiencing extreme diarrhoea. As aforementioned, my memory of the timings of this day are somewhat blurred – but at some point
during the second day in bed (approximately lunchtime), I tried to get to the kitchen to get water. I had, literally, been dreaming about water as my body was in an extreme state of dehydration.Strangely, this craving was also accompanied with a craving for oranges – a fruit which I am allergic to. I pin-balled along the corridor to the kitchen, barely able to stand or walk. Looking back, I can’t
believe that I didn’t think to try and get help at this stage, but my thoughts were very confused, and all I can remember thinking about was water. I knew there was something categorically wrong with me, but I didn’t think things were as bad as they were.

Approximately seven o’clock that evening (the day after leaving the library), one of my flatmates came into my room as she hadn’t seen my in a couple of days and wanted to make sure that I was okay. This flatmate is luckily one of the most caring, naturally concerned and maternal people I have ever met,and was also training to be a doctor, which was a blessing in this situation. Anyone else would have assumed it was a bug. She phoned NHS 24, a service which, alongside my flatmate, saved my life.

The staff at NHS 24 asked to speak to me, but I was making no sense. I remember feeling hugely frustrated as I knew what I was trying to say, but couldn’t find the right words. They asked my flat mate to take me to hospital as soon as possible. Still not really knowing the extent of my ailment phoned a taxi instead of an ambulance, when little did we know, I was only hours away from death.

By the time I got to the hospital I couldn’t walk and fell unconscious. I next remember coming round for a few seconds, massively confused in a room where there were lots of machines beeping, and about eight doctors crowded around me. I was in and out of conciousness, screaming in pain as they used needles to insert various tubes were inserted in my arms and neck. I remember was feeling extreme discomfort in my lower abdomen, as one of the nurses recovered a tampon I was wearing as she was trying to insert a catheter. Up until this point, the doctors were unsure what was causing my illness – but this informed them what might be causing it.

I remember a few things from this room, the first, until this day, is still the most upsetting and difficult part of the story for me to recall. I was being so insistent that there was nothing wrong with me, that the doctor was trying to explain the severity of the situation to me, as he said, “Katie, there is a chance you won’t pull through this.”

A matter of hours later when I had started coming round, I was still delirious. One of the doctors, in an attempt to see if my thoughts were becoming clearer, asked me if I was ok. I remember replying with absolute confidence, “Honestly, don’t worry about that, I’m just back from touring with Beyoncé.”

The next thing I remember is waking up in Intensive care, with my mum next to me holding my hand. This was approximately four hours after my admission, and I only woke up momentarily, before sleeping again for another couple of hours. This cycle went on for two or three days.

For the next few days I didn’t spend much time awake. I had been hooked up to a drip to attempt to rehydrate me, as well as drip used to get antibiotics into my system. I was on four different types of antibiotic, and consequently for a long time after leaving hospital, my immune system was very weak. I was also on morphine, which gave me some very bizarre dreams.

Katie with her flat mate who saved her life

After I was starting to feel a bit better, and sleeping less, the doctor came to speak to me properly. He explained I was suffering from menstrual toxic shock syndrome, a bacterial infection women can get from using tampons. He reminded me that during my resuscitation, the nurses had recovered a tampon from inside me, and that they had sent it for tests to confirm. The results from the tampon were conclusive that I had suffered from toxic shock syndrome, as Staphylococcus Aureus bacteria was found on this tampon. These bacteria usually live harmlessly on the skin, but if exposed to the bloodstream, can release poisonous toxins. These toxins can disturb he function of vital organs, which is what happened to me.

I was discharged from hospital about seven days after my admission. This experience is very hard to actually put into words emotionally, during my stay in hospital I cried and laughed alternatingly all day, which was obviously confusing for everybody and upsetting for my close family and friends who were there to witness it. The experience has deeply scarred me, as being that near to death is never a prospect that you think you will encounter.

Two months afterwards, Katie was still suffering from hair loss and fatigue

The aftermath was horrible. The skin on my hands was starting to shed, which is another tell-tale sign of TSS approximately a week after infection. This shedding of my skin continued long after I got home from hospital on both my hands and my feet, and I also began to lose a lot of hair. This process started approximately two months after getting out of hospital, and it was almost an overnight change from not losing any hair, to losing handfuls every time I touched my head. Thankfully I never lost enough hair to create any bald patches, but my hair was thinned significantly. I also got heavy horizontal indentations on all of my toe and finger nails, called “Beaulines”. These are also a common side effect of TSS, as when my body was at its lowest during the infection, all of my body’s energy was put into healing, so growing nails took a back seat. The worst side effect of my illness by far was the fatigue, which persisted for at least seven months after hospitalisation. In fact, a year later, I still got tired very easily, especially after any form of exercise.

If I could offer any advice, it would be to avoid super absorbency tampons, they are most commonly associated with Toxic Shock. If you are going to use them, only use them for a couple of hours if absolutely necessary, and especially do not use a high absorbency tampon to avoid having to change your tampon as often. I was still using a high absorbency tampon on day four of my period, because I didn’t have any others at the time.

But it’s important to remember that any tampon can do this, and I would strongly recommend trying sanitary towels. I was always very off put by the thought of using them, but now I find it actually more hygienic, safer and more informative of the stage you at in your period. If you are still not convinced, at least wear one if you’re out drinking, or going to bed, as in both of these situations there is a chance you could leave it in for longer than anticipated.

There is a 5-40 per cent recurrence rate in girls who have previously suffered from TSS, so I will never again risk using a tampon, even if I was careful.

@daisy_bernard

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