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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

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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

MCAS: 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

THE TONGUE TWISTER

The tongue twister

A few months after the first hospital dash,  my sister threw a dinner party to celebrate moving into her new home. The evening had already descended into farce as her cooker had blown up before we’d arrived so she was forced to nip next door to prepare the main meal in her neighbour’s oven. Impressively, she managed to muddle through and all four of us had a good laugh about it as she served up the starter, which was a salad of green leaves, halloumi, pomegranate and balsamic vinegar.

I took one mouthful and became aware of an immediate itching – a sign of an allergic reaction – in my throat. I popped an antihistamine to be on the safe side. It seemed to do the trick. Except, a few hours’ later on the 15-minute drive home, my tongue began to expand at an alarming rate. Initially, it felt as though it were ‘in the way’, but by the time I reached my front door it had swollen to an enormous size and barely fitted inside my mouth.

I didn’t know it at the time but I was having what is known as a ‘secondary reaction’. As I opened the front door I felt dreadfully light-headed and dropped to the hallway floor; my blood pressure was plummeting. By now swallowing had become difficult; my breathing laboured.  I grabbed the phone and dialled 999 but it took forever to get my words out.

“Was I about to suffocate to death on my own? It certainly felt that way.”

Somehow the very patient operator understood what was happening and urged me to use an auto-adrenaline injector (commonly known as an Epi-Pen). Except I hadn’t been prescribed one.  “Is anyone with you?” she asked. “I – live – alone,” I replied in between gasps for air. “Open the front door now,” she instructed. “The ambulance is on its way.”  Terrified, I started to cry.  Is this what suffocation felt like? Was I about to die on my own? It certainly felt that way.

I counted every one of those ten minutes spent waiting for the medics to arrive.  They set to work immediately, administering adrenaline before rushing me to the hospital. The conclusion was anaphylaxis.

Again, steroids were prescribed and I was told I’d need to see the immunologist again at a later date.

So I waited patiently for my appointment to come through. Eventually, I returned for another set of skin prick tests for suspected food allergens as doctors tried to pinpoint the cause of my attacks. Again, the results came back negative. Why could we not find the trigger? My immunologist explained it was like searching for a “needle in a haystack” before adding that weird reactions like these can often disappear as quickly as they start. I held onto this hope. It soon faded.

“Each episode would affect my airway: either my tongue would swell or my throat would close up.”

Just when I thought things couldn’t possibly get any worse, the allergic reactions began happening EVERY DAY. Each episode affected my airway: either my tongue would swell up, my throat would close or both.  Occasionally the reactions would be accompanied by an intolerable itching all over my skin and they’d occur for no rhyme or reason; in my sleep, on an empty stomach, when I got hot, and, I eventually deduced, when I ate certain foods; namely fruit – which being a non-meat eater translated to half my diet – marmite, vinegar, mature cheese and alcohol. Yet again the skin prick tests returned negative.

A daily double dose of long-acting antihistamine was prescribed to try and calm my overactive immune system, alongside fast-acting tablets to take at the first sign of a reaction as well as an auto-injector adrenaline pen, which I was instructed to carry on me at all times. This was to be used if the other drugs failed to work and I was struggling to breathe or speak.

“I was instructed to carry an auto-injector adrenaline pen at all times.”

By now I’d become too scared to eat and operated in a state of constant drowsiness – a side effect of the medication. My GP told me to rest. I didn’t and pushed on. Being self-employed and with a mortgage to pay, I was forcing myself to work every spare minute to make up for all the time and money I’d lost through the revolving door of hospital appointments.  I became a virtual recluse and felt utterly exhausted.

Questions whizzed around my head. Why was my previous good health falling apart at such an alarming speed? Why were the specialists unable to tell me what was going on? At least if I knew what I was reacting to I could regain a sense of control. Not knowing made me anxious.

Alongside this, I was also undergoing a number of MRI scans because between the first and second allergic reaction, my right foot mysteriously stopped working… Read here. 

 

 

 

 

 

 

 

Helen's Health

WHEN YOUR FOOT DECIDES TO STOP WORKING

When your foot stops working

Yes. That’s right. Between the first and second severe allergic reaction, my right foot perplexingly started to misbehave. Just like that. On the day it happened I was working a news shift in an office. “Careful there,” my editor said as I stumbled on my way to the printer. I laughed. “I’ve got really bad pins and needles in my right foot. It must have just been the way I was sitting,” I casually responded.

Now I’m not a hypochondriac and figured there must be some reasonable explanation. Being quite a sporty person, I’m used to injuries, pulled muscles and have quite a high pain threshold.  I simply assumed my legs had been crossed or held in an uncomfortable position for too long and figured the numbness would subside. I was wrong. Five hours later my lower leg was still dead, I had no feeling in my toes. I thought things would improve by the next morning but my foot began to slap uncontrollably when I walked. So I booked an appointment to see a private physio.

My foot began to slap uncontrollably when I walked

“I don’t want to alarm you but think you need to book a GP appointment if things don’t improve,” she said after much poking, prodding, massaging and ultra-sounding. One week after the symptoms flared up, I was lying on the couch in front of my doctor who was unusually quiet as he examined me. I squirmed as my left foot and ankle were pushed, pulled and scored with a weird tool that resembled a knitting needle. Being hugely ticklish, the sensations weren’t that pleasant. He repeated the process on my right foot and ankle. “How does that feel?” he enquired. “I’ve no idea,” I replied, unable to feel a thing.

My left foot and ankle were pushed, pulled and scored with a weird tool that resembled a knitting needle

He immediately called a neurologist (brain specialist). The consultant on the end of the phone agreed to see me. My mum drove me to the hospital, but the A&E receptionist refused to accept the letter from my GP and I was told I’d have to wait in the emergency department. Many hours later I saw a doctor who then went to find the neurologist. He’d since gone home. Hours later I was x-rayed for a broken ankle – it wasn’t – before being told that I’d need to book another appointment with the GP who would refer me to the neurologist. Back to square one. I felt utterly deflated.

Not only was my foot playing up, I’d also begun to experience numbness on the left side of my face and my fingers felt as though they weren’t working properly. Alarmingly, I’d also begun dropping things without realising when distracted or in conversation. Things were really beginning to get me down. I’d always been an optimistic, glass half full person but was struggling to see the silver lining in all of this. My mind went into overdrive. My beloved aunt and cousin had both died from brain tumours at a young age. Was this the fate that awaited me?

I experienced numbness on the left side of my face and my fingers felt as though they weren’t working properly

Despite knowing better,  I turned to Google for clues. I shouldn’t have. I scared myself silly. At the same time, my tongue swelling episodes had ramped up phenomenally. Eventually, I saw a neurologist and a diagnosis of Foot Drop – paralysis/weakness in the foot –  came. Again there was no concrete explanation for it.  MRI scans of my brain were – thankfully clear – but I’d still need to be monitored.

Over on the allergy side of things my immunologist had ruled out anaphylaxis and ruled in idiopathic angioedema – unexplained deep tissue swelling. This occurs when the body mistakenly detects a harmless substance, such as a certain food, for something dangerous triggering the release of histamine to fight the threat. The protocol was to manage the symptoms in the same way one would for anaphylaxis because every reaction affected my airway.

I was also in the process of selling my house – one of the most stressful things you can do

On top of this, I was dealing with repeated bouts of episcleritis which caused excruciating pain and light sensitivity in my left eye. Having developed an allergy to ibuprofen – a painkiller I’d always been able to tolerate – I was back and forth to the eye specialist who prescribed steroids.  Oh,  and I was also in the process of selling my house – one of the most stressful things you can do.

Ironically, exercise – the one thing I’d always rely on to clear my head during stressful periods – was no longer an option. I was forced to suspend my gym and tennis memberships. I stopped socialising. And because I wasn’t well enough to do first-person fitness-based newspaper commissions, I missed out on work. I felt lost, frightened and trapped in a downward spiral. I didn’t know who I was anymore.

So what happened next? Read here. 

Helen's Health