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Panic Attacks of AS

Last Sunday I had my second panic attack. The terrifying ones when your hands seize up, you can’t stand, you’re gasping to inhale air and it feels a little bit like your chest might explode or close up.

It’s my 2nd one in 2 years, but I still feel like that’s two too many.

My first panic attack

I had my first panic attack in July 2018. I’d been diagnosed with AS a couple of months before, and symptoms of the disease had suddenly accelerated. My body was overwhelmed. We had been in and out of A&E most weeks, with almost weekly hospital and medical appointments.

Unbeknownst to me then, was that stress was a trigger, and that was why everything suddenly seemed to kick off post-diagnosis. After feeling relatively fine, normal even, up until that fateful appointment, the stress of the diagnosis had a lit a match in my body.

I was being sent to so many different specialists apart from rheumatologyphysiotherapists, audiologists, opthamologists, neurologists; I had weird skin infection lumps coming up under my skin and an array of new symptoms.

I went to the hospital a lot

As most of you probably have experienced, some AS symptoms present as something more serious, and to take precaution we were often sent to A&E. On this particular outing to the emergency department, out-of-hours suspected something might be wrong with my heart. We saw one doctor, then another doctor. Our third doctor was a lovely and calm young man who took us into another room and simply asked "So Fiona, can you tell me about your symptoms?”

And that was it. Out of nowhere, my breathing got really shallow, like it was getting on top of me. I was crying, then gasping for breath like a fish out of water. I was utterly terrified. I had never experienced anything like this before. Every time I tried to fill my chest with air I couldn’t. I couldn’t breathe deeply. (Where was my singing breathwork training now?!) My hands were clutching at nothing and I genuinely thought I might pass out/stop breathing/die and "Oh God, what is going to happen, why can’t I stop?’" I got to the sink in the corner and threw up three times. (It was while before I could face chicken soup again). An ECG concluded that it was not my heart but - as is often the case on a trip to A&E - my AS presenting in a new form - costochronditis.

It's taken an emotional toll

I’m very grateful that the NHS took no chances and took precautions, but trip after trip, and new scare after scare had taken its toll. I had always felt strong and healthy, but now my body and mind were in constant turmoil. I have never enjoyed feeling out of control. I love to plan. I prided myself on being able to maintain my composure in trying situations, and yet I had just completely lost control of my own body. I felt profoundly embarrassed even though I knew there was no shame to it, and made myself a sort of vow that my first panic attack would be my last.

And then last Sunday happened. I was homesick. In the middle of my longest flare. Surviving on little sleep, feeling unproductive, not exercising because of fatigue, and feeling guilty. And of course, feeling the lockdown up and downs (well, downs) – missing normality, family and friends, but also feeling nervous about the easing of lockdown restrictions in London. I’m on the shielding list and although I know it’s for my own good, I don’t want to be confined to walking around our block until the end of summer. And yet, in a far luckier position than some, so more sadness, guilt, and frustration.

Then I had a moment of clarity

Afterward, I had a lightbulb moment or a slow realization. Although I know, absolutely that there is no shame in having a panic attack, and have always felt that way when I have heard of friends or other people experiencing them, I had decided that for me it wasn’t ok.  I have prided myself on being strong and positive, getting on with it, used to people saying "Oh, I’d never have guessed…" And somehow this meant I couldn’t hold myself together. But acknowledging this doesn’t make me weaker. Of course not. I’m brave. I’m strong. And still positive.

I did, however, need to break the rules I had implemented for myself, that this was somehow a bit shameful. The way I see it, when you have a panic attack, you’ve been so strong and brave, keeping it together for so long - that your body has such a huge reaction to shock you into realizing that you need to change something to help yourself. That you can’t just keep calm and carry on. For me, this was a reminder that at times, it does get too much, and that is fine. To put some things into place to manage my mental well-being – meditation, stick at trying some CBT techniques, talk to a friend, adjust exercises to stretches. And when the challenging days come - take it easy, read the books and watch the movies and not feel the guilt.

If you’ve had experiences with panic attacks, please share with me how you manage and approach them.

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