COOKING SAVED MY LIFE.

 "After falling ill in 2016, aged 14, following a viral illness I developed on a school netball tour (I was always sporty growing up!), I never expected that this was just the start of an endless road of poor health.

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After the virus, I started feeling exhausted and dizzy most of the time which progressively developed into frequent collapsing, losing consciousness for worryingly long periods of time... we all knew this was more than 'just a virus' or 'typical fainting'.

Around 6 months later, I was diagnosed with POTS (postural orthostatic tachycardia syndrome). An autonomic nervous system condition in which your heart rate and blood pressure do not regulate efficiently, along with other vital bodily functions. This was sadly not the end of the diagnoses to come.

Despite being properly medicated for POTS, I was still having what were described as 'strange episodes' where I would seem distant or not act like myself. These strange episodes eventually developed into full tonic clonic seizures. After invasive testing, I was eventually diagnosed with Epilepsy as well as POTS. It sounds strange to say but I felt relieved when I got the diagnosis. I was convinced that I would 'take a pill' and it would all get better. This was far from what happened.

 

The epilepsy medications not only gave me a multitude of side effects but slowed my brain down even more than before. They weren’t really working either. I went from cocktail to cocktail of various meds whilst enduring frequent seizures until I was finally prescribed one that reduced my seizures. 

 

It was at an appointment with my neurologist that he noticed I'd lost a bit of weight, though brushed it off as nothing concerning. After a few more months, my weight kept dropping. It was at this point that my doctors started to worry and investigate the cause. I was taken off of the epilepsy medication as it could have been causing this sudden weight loss.

 

The weight loss carried on however the seizures came back worse than they were before.​

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At this time I was trying to carry on with my education, after ending up homeschooled for my GCSEs and returning to sixth form. I had to to permanently leave in lower 6th after a few more serious episodes resulting in one too many rounds of CPR and ambulance rides. Sadly I was never able to return to education, despite always loving school.

 

All of this resulted in long haul hospital stays, where on many occasions I wasn’t treated very well.  A lot of Doctors and Nurses  would assume that I had an eating disorder and was trying to lose weight. I sat a hospital bed being watched eating 24/7 for months before they believed me. They carried on investigating but I was officially declared a 'mystery'.

I was sent home under guidance of two dieticians while the medical tests continued. I was advised on what I should be eating to gain weight. It mostly consisted of: pizza, pasta, pastries, ice cream and sugary drinks. All things that I'd always loved, however I was  experiencing severe nausea and stomach throughout the day which made it not so enjoyable. 

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Then Covid hit.

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I was relying on going out to restaurants and dessert parlours before the lockdown to get in as many 'weight gaining foods as I could. However once the pandemic hit, I had to isolate due to my frail condition and couldn't go out the house.

I was so severely malnourished and underweight by this stage that my body was shutting down. 

I needed a wheelchair to move around and was sleeping downstairs with my dad every night, Unable to lift my own head off a pillow - let alone stand up. I developed sepsis and things went from bad to worse, to the point where we weren't sure i would make it through the night

One thing I was always adamant on was that I kept going. I was always a rather stubborn thing growing up and didn't want anything to stop me! even at my worst; wheelchair bound and solely relying on my supportive parents to care for me, I was still trying to convince everyone that I was 'fine'.

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At this stage, I didn't know much about diet and nutrition so decided to do a bit of research, and complete an online course about nutrition.

I read about how certain food groups can sometimes be inflammatory for certain people. I already knew that I struggled symptom wise with gluten and dairy. So with everything else we and the doctors had tried with no luck, I figured it wouldn't hurt to give it a go.

 I stripped my diet back right down to the basics. Fish, Vegetables and plain rice for most meals. I would also puree everything down so that it was as easily digestible as possible.

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Then a miracle happened. Slowly but surely my weight went up and I started to feel slightly better.

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It was like after all that time, I was finally absorbing the nutrients my body needed.

At this point, I slowly started to reintroduce foods into my diet. Learning more about FODMAPS and which foods I could tolerate with minimal symptoms. When I would eat gluten, dairy or high fat food, I would have the same stomach pain as I used to have as well as breaking out in hives. After establishing what my body couldn't tolerate (and getting bored of fish, veg and rice!), I set off on a mission to create food that I could actually enjoy whilst keeping my symptoms at bay. 

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Skip forward a few years and I was a normal weight again, able to walk and enjoy life again.

Cooking because I needed to had turned into a strong passion for all things to do with creating fantastic tasting food and delicious cakes.

This is the point in early 2022 that I set up TrebleStef.

While I still have to deal with my various medical conditions, I now have my handsome a talented dog Treble!

Treble (named after my love for music) is training with Medical detection dogs charity to be my 'medical alert assistance dog'. He is already able to detect when I am going to collapse and helps me manage my condition to the point where I can get on with my day without thinking I'll be in an ambulance at some point.

Whilst I may never be able to do what most of my peers would, I will always look back and see how far I've come.

It makes everyday special and adds fire to my passion to help people who have various dietary needs for health reasons.

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If you've got this far, thank you for taking the time to read my story and I hope you can enjoy my food, knowing the passion behind it all came from ultimately saving my life!"

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By Steph Cameron, 01/01/2024

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