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MCAS

MCAS: The truth behind my Instagram photos

MCAS and Instagram

Everybody has their own way of dealing with MCAS [Mast Cell Activation Syndrome].

Some document their symptoms and share pictures of their reactions.

Others discuss treatment options that have helped or made them worse.

Personally, I either disappear off the face of the earth – that’s when I’m truly struggling – or pretend that everything’s okay because I’d rather not concern my family or friends.

But seeing as it is World Mental Health Day [10 October 2018] and we’re being encouraged open up for the sake of our mental wellbeing, I’m going to share a secret.

I’m not always fine. In fact, more often than not, I’m petrified of this frustrating horrible disease and just internalise it.

Of course, you wouldn’t know it by looking at my recent Instagram feed which is filled with images of stunning Bajan beaches – the snaps were taken on my most recent holiday. (Regular readers will know I struggle to relax but Barbados, which was the inspiration for the name of this blog, is the one place in the world where I truly switch off).

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The calm before #stormkirk #pink

A post shared by Relax Ya Self To Health (@relaxyaself2h) on

However, the pictures only tell half the story because behind the scenes I was also dealing with very nasty tongue swelling and throat closing episodes that left me feeling frightened, groggy and anxious.

I thought I was beginning to beat this damned condition. [Read more about MCAS here] The month before I’d gone for 10 days without a serious reaction, managed to play two tennis matches – popping a super strong antihistamine beforehand as a precautionary measure – and even reintroduced certain foods.

I was beginning to feel like my old self, especially as I was returning to activities that used to bring me such joy.

But a couple of days before the holiday, my trusty car stopped working. Just like that… Turned out a cambelt (no, I had no idea what that was either) had gone, there was engine damage and I needed to buy a new vehicle. WTH? I was strapped for cash (having moved house earlier this year), and still chasing invoices from publications that hadn’t paid me for four months.

My head began to spin.

I started panicking about the car being stranded at the garage while I was away, the storage fees it might incur, how I’d commute to the news shifts I had booked in immediately after my holiday (I live alone) and whether I’d be able to find a car within one day of my return.

Then boom…my mast cells decided to throw a party gifting me a tongue swelling reaction the night before my flight.

It happened again on the plane – despite taking meds as a precaution before the journey – and then every day of the trip bar one – in some instances occurring twice in 24 hours.

On the last two nights, intense palpitations – another symptom of MCAS – were to be my wake-up call, not the sound of the ocean.

Although I refuse to be defined by this condition, the truth is that living with MCAS is exhausting and frightening.

When I’m in a continuous flare, the thought of suffocating to death (or my meds failing through overuse) is never far from my mind.

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Take me back… #beachbum #serenity

A post shared by Relax Ya Self To Health (@relaxyaself2h) on

Even if I manage to control a reaction, I’m left wiped out for days. The accompanying brain fog is a joke – I struggle to formulate words – not great when I rely on them for a living. The stabbing pains in my joints aren’t much fun either.  Oh, and every day I wake up with a sore throat or feel as though I’m fighting something.

So why am I telling you this now?

Well,  when the going gets tough I stop speaking – I AM a chatterbox so this is out of character for me.

I vanish from social circles and, seemingly, stop blogging. (Apologies for the dearth of recent posts – now you know why)

I’ve since recognised this withdrawal trait in a couple of my (non-MCAS) friends. I suspected one was struggling recently so I sent a text to let him know how grateful I was to have him in my life and thanked him for being amazing.

He responded saying he had woken up to my message, texting back a row of love hearts. He was having a hard time and thanked me for making him feel better.

This MCAS journey has taught me about anxiety – something I never used to struggle with – and how to identify the individuals who might be struggling with their own mental wellbeing.

It’s made me realise that if someone is behaving out of character or is being non-committal that there could be more to their actions – or lack of them – than meets the eye.

We shouldn’t judge but simply be kind. A simple ‘are you okay’ could make all the difference.

For more articles on mental health and wellbeing you might like to read our interviews with Jonny Wilkinson and Gail Porter.

And meet the man who is turning barbershops into safe havens to prevent male suicide

Helen's Health, Wellness

THE NIGHT IT ALL BEGAN

The night my health took a turn for the worse

I’m no saint but on the whole, I’ve always tried to adopt a relatively healthy lifestyle. Although quite partial to the odd chocolate croissant and cappuccino, I’m one of those rather annoying people who would rather spend a weekend blasting balls on a tennis court or running outside than stuck indoors watching a TV Box Set.

I think nothing of blitzing up green juices and smoothies and at the risk of sounding like a total bore, I’ve never smoked, rarely drink alcohol and have followed a meat-free diet since the age of 13. Except on December 3 2015 my life was turned upside down when I was rushed to hospital with my first ever allergic reaction. It was a particular bad boy – life-threatening in fact –  and came on entirely out of the blue.

On the night in question, an old school friend had popped over for a drink and a catch-up.  I’d warned him in advance that I might be drooling – not in that way. Earlier in the day I’d had dental work carried out on an excruciatingly painful molar tooth which, it later emerged, was dying but by the time Stephen arrived at my house my mouth felt pretty normal and I was yakking ten to the dozen as usual.

“My mouth felt pretty normal – I was yakking ten to the dozen as usual”

Only, an hour later I became aware of a strange sensation in my upper lip. It felt heavy and tingled. “My lip feels weird,” I blurted out to Stephen, who was sitting in the armchair opposite me. He peered over.  “It looks fine to me,” he replied nonplussed.

So I let it go for the rest of the evening only when I went to wave him goodbye at the front door, I caught sight of my reflection in the mirror. Either my mate was being polite or needed his eyesight testing. Staring back at me was a massively swollen top lip.

By now it was midnight. I awkwardly brushed my teeth, negotiating the horrendous trout pout as I went, before climbing into bed, and prayed that the swelling would subside by the morning.

“I awkwardly brushed my teeth, negotiating the horrendous trout pout as I went”

Except, as I tried to nod off, I became aware of an intolerable itching in my throat. A voice inside told me to call 111 for advice – something I never do – but thank goodness I did. The operator was a calm and lovely chap who explained that the situation might be serious and he’d need to send a paramedic round asap to check me over. As I lived alone, he told me to stay on the line with him.

Within minutes a first responder had arrived at my house. He quickly injected me with antihistamine injection before calling an ambulance. Moments later two paramedics arrived at my door. “Ohhh, someone’s been in a fight with Frank Bruno,” quipped one, before turning serious when I refused to go to the hospital.

“There are people far needier than me, I wouldn’t want to take up a valuable NHS bed,” I exclaimed, before being told in no uncertain terms that I was having a severe anaphylactic reaction. “But I’ve never suffered from allergies,” I meekly protested as I walked up the stairs to gather my things. Precisely two minutes later my throat started to close up.

“Precisely two minutes later my throat started to close up.”

After this moment everything is a blur. I was pumped full of adrenaline twice  – first in the ambulance and then later on in the A&E resuscitation ward – before being admitted to hospital. Doctors asked if I’d eaten or done anything different on the night of the attack. I hadn’t.

The only thing I could think of was the dental work on the massively hyper-sensitive molar tooth earlier in the day but then I’d had a number of fillings in the past and had never experienced a reaction before to the anaesthetic. I was later given steroids, referred to an allergy specialist and sent on my way.

I shrugged the episode off as a random event, especially as I’d always been relatively fit and well. Little did I know then that my health – something I’d always worked so devotedly to maintain – was about to unravel in the most spectacular fashion. Read here.

 

Helen's Health