Nelly’s story about anxiety

I’m Nelly but everyone calls me “nervous Nelly” because I’m always worrying! “What if I’m late for school?” “What if the teacher shouts at me in front of everyone?” “What if everyone laughs at me?” Believe me, there are a lot of “what ifs” you can fit in one day!
My teacher says that a little bit of worrying is completely fine and can even help us to get things done (like homework!). He says that these little worries usually go away after a while and then we feel calm again. Sometimes though, my worries get stuck in my head and feel so big that I panic, which can be really scary. When my worries get stuck like this, they stop me from doing things I enjoy. That’s when I know it’s time to get help! As well as asking for help, I’ve found lots of things I can do to help myself. I’m going to tell you about my “Calm Box” and all the other things that have helped me.

I first made my Calm Box to help with PANDAS flares. I was diagnosed with PANDAS a few years ago and when I have a flare, I can get really panicky. You’re probably wondering what PANS and PANDAS are. Well, let me tell you!
PANS and PANDAS are illnesses that suddenly appear and make you act in strange ways. When you have PANS or PANDAS your immune system, which usually helps your body to fight bugs, attacks your brain instead, making it swollen so it doesn’t work properly. Everyone’s symptoms are different but for me it means I have lots of tics, where I move in strange ways, OCD (Obsessive Compulsive Disorder) where my brain tells me to do things a certain number of times, and really bad anxiety, which means I get really worried and scared about lots of things. Having PANDAS means I worry a lot about small things like leaving the house, going to school, and being away from my parents.
This is why I created my Calm Box!

A Calm Box is a box that you fill with your favourite things that help you to focus on all your senses – sight, sound, touch, smell and taste. When I start to feel worried I look in my Calm Box and it gives me things to focus my mind on so that I’m not thinking about my worries. This makes me feel more relaxed. Let me tell you what I have in my box in case you want to make one yourself!

In my box I have:
1) A large sea shell. I picked up the shell when we went on a trip to the beach. When I hold it, it reminds me of a really happy time, which helps me to relax. Also when I put it to my ear, I can hear the sound of the sea which calms me down.
2) A scented candle. My candle is called “Tranquil Garden” and smells of jasmine and lavender – my favourite smells! Just smelling the candle helps me to relax.
3) A squishy stress ball. When I get really anxious, squeezing the stress ball relaxes all my muscles. Relaxing my body helps my mind to relax too.
4) A journal that I’ve filled with happy quotes and positive phrases about myself. The happy quotes cheer me up and the positive phrases about myself – mum calls them “positive affirmations” – make a big difference. I usually write two new phrases in my book every morning and then repeat them to myself about 10 times. They make me feel much more confident for the rest of the day. This morning I wrote “I can try my best” and “I am brave and can do hard things” and I felt happier and braver all day! You should try it! Mum says it works because when I’m thinking positively over and over again, my brain starts to believe the positive thoughts and then it’s much easier to feel and act in a positive way. She always says, “Nelly, if you want to make less room for negative thoughts, you need to repeat the positive thoughts!” She explained that the thoughts we think the most are the ones that get stuck in our heads because every time we think something over and over again, a “neural pathway” is created in the brain. So saying my positive phrases every morning is like brain training to make the pathway stronger! If I can train my naughty dog, I’m pretty sure I can train my own brain!
5) Photographs. I have one photograph of my family which reminds me that I am loved by lots of people. The other photograph is of the sea, which I find really calming.
6) A colouring book – colouring helps me with stress. It really relaxes my brain!
7) A bottle of water. When I get really anxious my mouth becomes dry and my breathing goes really fast. Sipping the water helps me to breathe more slowly, which helps me to feel calmer.
At first, I just used my Calm Box when I had a PANDAS flare but over the past few years I started getting anxious about other things too.

First of all, the Covid pandemic made my anxiety worse. Everything seemed to change so fast. We suddenly had to do school work at home and we weren’t allowed to see friends. I used my Calm Box a lot during those lockdowns. And then when things started getting back to normal, I worried about germs and being close to people again. The box helped me to focus my mind on the present moment rather than worrying about things that are out of my control.
Eventually, life seemed to be settling down and we went back to school, but then something awful happened – the war in Ukraine. People in school were talking about it and I saw some really horrible things on the news. It made me feel really sad and scared and all the feelings I had during Covid came back again.
Eventually I asked mum and dad about it. They sat me down and explained what was happening and they said that all my feelings were completely normal – they felt sad too as did lots of other people. They said the war was really complicated and they let me ask lots of questions. Even though they didn’t have all the answers, talking to them made me feel better. They said that lots of people are working hard to find a way to end the war. They’ve always told me to look for these helpers – the kind people who help in bad situations – and there are lots of people helping those affected by the war. We even had a non-uniform day at school when we dressed up in yellow and blue to raise money for the people fleeing the war and it was good to feel that we were helping in a small way too.
After I started to feel calmer, mum and dad suggested we all talk again about my anxiety as they could see I was struggling. It always helps to talk about it when it starts to get out of control so that it doesn’t get too much or go on for too long. It especially helps to be reminded of what anxiety actually is and why I’m feeling the way I do. Knowing what it is and where it comes from helps me to deal with it.
Let me explain it to you!
Anxiety is that scared or nervous feeling we all get when we have to do something new or something we’re not sure we can do. It’s completely normal and we all feel it sometimes. It can even spur us on to do things that are out of our comfort zone.
We feel scared or nervous because our brains think we’re in danger, even when we’re not! You see, there’s a part of the brain called the “pre-frontal cortex” which is logical and tries to help us make wise choices. But there’s another part of the brain called the “amygdala” which controls emotions – it doesn’t think logically and thinks everything new is bad! When we feel stressed or afraid, the amygdala takes over and releases chemicals called hormones that prepare our bodies to run away from danger, fight the danger, or completely freeze (and maybe hide!). It’s called the fight, flight or freeze response and it’s meant to protect us! This built in response started a long time ago when we lived in caves. Way back then it was really useful – it kept us safe from real danger like sabre-toothed tigers because it helped us to run away really fast! But now, our brains get confused and respond in the same way even when there isn’t real danger – like when we are trying something new for the first time.
When our brains are responding in this way and pumping stress hormones around our bodies even when there’s no real danger, it can be hard to stay calm. Sometimes, we just want to run away! This anxiety affects our thoughts and feelings but also our bodies. People react in lots of different ways but for me, my heart starts racing, I start breathing very quickly, my palms start sweating, my mouth goes dry, and I get butterflies and feel sick. I used to try to cope with these horrible feelings by avoiding the situations that made me feel uneasy but that really doesn’t help – the feelings never go away that way. They just get bigger and more stuck inside your head!
Instead, I’ve learnt that what I need to do is, first, quieten down my emotion brain (my amygdala) that lets my bad thoughts spin out of control and causes all those horrible feelings and, then, give myself time for my logical brain to kick into gear!
Everyone is different but these are some of the things that give me time to think straight and help to calm down my emotions before they get too big – I like to think of this list as a menu that I can choose from at different times!

1. Breathing! I use something called the box method to help me control my breathing. When I start to panic my breathing goes really fast so using the box method helps to slow my breathing down. It’s called the box method because you have to imagine you are breathing around a box! First I breathe in slowly for four through my nose as I imagine going up one side of the box. Then I hold my breath inside for four as I imagine going across the top of the box. Then I slowly breathe out for 4 through my mouth as I imagine going down the other side of the box. And then I hold that for four as I imagine going along the bottom of the box. Then I repeat it until I’m relaxed – I usually go around the box about 8 times!
2. The next thing I do is to remind myself that my bad thoughts, which affect how I feel and behave, do not need to be listened to. Bad thoughts are not facts – they’re usually not based on any evidence! So when I have a bad thought, which will make me feel bad, I tell myself it’s ok not to listen to it! I try to imagine my bad thought flying off into the sky. It has no control over me! Instead, I look at my journal full of positive phrases and fill my brain with much nicer thoughts. The more I practice swapping the unhelpful bad thoughts for positive ones, the easier it becomes.
3. Swapping bad thoughts for positive ones also makes it easier to face the things that make me feel uneasy. Once I’ve faced these things rather than avoiding them, I get more and more used to them until eventually I don’t worry about them anymore.
4. Another thing that helps when I’m feeling panicky is using all my five senses so I am focusing on the present moment rather than on my worries. So I think about five things I can see, four things I can touch, three things I can hear, two things I can smell and one thing I can taste. By the end, I’m really paying attention to my surroundings and I feel much more relaxed.
5. Mum and dad also help if they are nearby by giving me a cuddle and reminding me that the anxiety will pass – remembering that the feelings will go away soon really helps when you’re feeling panicky.
6. I’ve also learnt that if we name our feelings, those feelings become less powerful in the brain. So when I start to feel panicky, I now name it as anxiety! Then I can do things to change those horrible feelings into nicer feelings before they get too big and take over! Just like some things trigger our not-so-nice stress hormones, we can trigger the nicer hormones by doing things that make us feel good. And the nice hormones are actually more powerful than the not-so-nice hormones! For me, I know that my nice hormones are triggered when I look through my Calm Box, read a book, watch television or go for a walk with my dog. Those things really distract me, trigger my nice hormones and make me feel much better!
By now, I’ve got really good at doing all these things to help myself feel less anxious – it just takes practice! It helps to remember that I’ve solved my own problems before so I know I can do it again. If I do get anxious, I usually have a little chat afterwards about what helped so I can remember it for next time. And because I know I’ll be ok, I’ve stopped worrying so much about the next time!

Questions and Answers with Dr Tim

What is the anxiety?
Everyone has anxiety and worries about the “what ifs” – they are a normal part of life and can spur us on to face challenges head on. Anxiety becomes problematic when all the “what ifs” build up and become overwhelming. When this happens, you may start questioning everything and worrying that something bad will happen now or in the future. As there are no answers to these questions, you tend to make up worst case scenarios, which cause more anxiety. Anxiety can then become a vicious circle that feels unmanageable, lasts for a long time, and can interfere with our everyday lives. However, as Nelly’s story shows, there are lots of ways to reduce the overwhelming feelings, regain control, and feel calm again.
What are the symptoms?
People have different symptoms when they have anxiety – some related to mood such as difficulty concentrating or irritability and some related to physical symptoms such as fast or heavy breathing, dizziness, nausea or stomach aches.
What can I do to feel less anxious?
There are lots of different things that can work to help you feel less anxious.
For some people, talking to a friend, getting enough sleep, calming breathing exercises and some kind of physical activity can help. For some, little changes to behaviour and understanding the link between negative thoughts, feelings, and actions help to reduce the symptoms of anxiety. Replacing negative thoughts with positive affirmations and slowly building up time spent in situations that cause you anxiety can help you to feel less anxious. Mindfulness and the 5-4-3-2-1 method that Nelly describes are also useful as they ground you in the present moment and help you to recognise unhelpful thinking habits. You can then set small targets to change these unhelpful habits. Different things will work for different people so, as Nelly says, it is useful to try different things until you find what works best for you. Nelly’s story is full of suggestions that you can try out to see what helps you the most.

Remember that we all feel anxiety and it can work for us as well as against us – what is important is how we learn to respond to it. If we practise responding in healthy ways and ask for help when we need it, we can all learn to cope with anxiety and live happy fulfilling lives full of new adventures..

Author: Dr Ffion Jones