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chronic illness

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 Helsy/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 Helsy/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

WHY IT’S OK TO SAY NO

Lean how to say no

It’s official. I’m a giver. I like to help people and can never say no.  It’s the way I’ve always been. Except I hadn’t quite realised how much I take on until this week. It took the words of my friend’s aunt with whom I’m staying in North Devon for me to sit up and take note. “You’re like a sponge Helen,” she said shaking her head. “You absorb everyone else’s problems. You’re forever trying to help people and investing all of your energy in them. When are you going to stop and help yourself?”

Auntie Chris blurted out the words after I received two texts and one email within the space of ten minutes. Each message was from a different person and each asked me to sort out a situation they couldn’t handle. AC, as I fondly call her, disapprovingly shook her head. The night before my tongue had spontaneously started to swell in front of her eyes.

You’re like a sponge

Hours earlier she’d seen me battle through an extremely stressful day work-wise. I’ve always thrived on the adrenaline of deadlines and juggling numerous pieces but the last minute demands on this particular day were off the scale. So the plan that night was to chill in bed with a book but my throat began to tighten within five minutes of settling down. “I can’t be having a reaction,” I muttered to myself. “Just have a glass of water, breathe deeply. It’ll be OK in a minute.”

Except the situation quickly worsened and when I checked the mirror my tongue was three times its usual size. I necked my medication. And swore. This is why:

  • I’d made my dinner from scratch and hadn’t eaten any trigger foods
  • I hadn’t exercised
  • I wasn’t hot
  • I wasn’t sweating

All of the above can set off a reaction – something I’ve painstakingly discovered over the past 18 months. So why the bloody hell was I reacting just as I’d hit the sack? I acted swiftly. And the meds stopped my tongue swelling any further – although it would remain grossly enlarged for the next 48 hours.

The next day AC ​sat me down in the dining room of her beautiful ​200-year-old farmhouse and gave me a stern talking to. “I think stress is a factor,” she said with a beady look in her eye. “You had a nightmare of a day yesterday workwise. I’ve been watching you since you arrived. You’re supposed to be having a break but you don’t help yourself at all. You start work at the crack of dawn. Some days you don’t eat breakfast or lunch and you’ll be sat at your desk for between eight and ten hours. That’s not good.”

Learn how to say no

“But I can barely eat anything at the moment because of my reactions,” I retaliated. “It’s not good enough Helen. Your job, by its very nature, is stressful. You’re working for lots of different publications which place numerous demands on you at short notice, you’re constantly firefighting plus you’re working on your blog until the early hours of the morning. You put loads of pressure on yourself. It’s not healthy.”

I was lost for words (unusual for me). I knew I worked hard but maybe she had a point. Then my phone vibrated. “Who’s that?” she enquired. “My cousin,” I answered. AC noticed the worried expression that fell over my face. “I need to sort this out.”  The very next minute I received an email from a work colleague who was asking for help. By this point Auntie C was ready to explode.

“You really cannot take on the world’s problems. It’s nice that you want to help people but you’ve got enough on your plate. Your body wants to heal but doesn’t know how to respond because it’s being bombarded by stress in all directions. Of course you can still help people but for the time being you need to invest time and energy in yourself, not others. You really need to learn to say no.”

Her words echoed around my head. Then I remembered something my dad always said: “Helen Gilbert. Other peoples’ messes cleared up by appointment.” At that moment everything started to sink in.

“Turn off your phone now,” AC ordered. Reluctantly, I agreed and although I went to check it three times in the hour that followed, I did not turn it back on.

Then I switched my out of office on before heading to Saunton Sands for an evening in front of the surf. I sat contemplating on that beach for 2.5 hours. And I left with a plan of action. For the rest of my time in Devon I’ll open the emails just once in the morning and once in the evening. Likewise, the mobile shall only be checked three times a day maximum.

Learn how to say no

 

Going forward, I’ll start prioritising and saying no to people *eek*.  It won’t be easy. H​ow the heck do you do this when it’s in your nature to help and worry about others? It feels bizarrely selfish. But being pulled in all directions is just not sustainable with the way my health is right now.

I’ll let you know how I get on and whether I​ experience fewer reactions as a result  of simplifying my life. In the meantime, I’d love to hear your thoughts on this. Do you find that you spend a lot of your time sorting out the problems of others? Do people constantly offload on you but disappear when everything is going well in their life? How have you learned to say no and look after yourself?

Please do comment below or on Facebook , Instagram or Twitter. 

 

Health, Helen's Health, Wellness